My name is Adrian C.

I have Pancreatitis with Pancreas Insufficiency.

I do not know when it started. I was first hospitalized for Pancreatitis when I was 12. I had gone home sick from school that day because of the pain and had spent 4 hours lying on the hall floor unable to move waiting for my family to come home. I had been having stomach pain for a few years though, tried explaining it to my doctor, but he thought it was just gas. When I went to ballet school one summer I spent 3 weeks puking and in pain, but I couldn't tell anyone because I knew that they would send me home. Therefore, I hid it.

I thought my first visit was a lark, a week in hospital -- all I had to do was deal with the pain. They did not want to give me painkillers -- in fact, it was not until my 2nd visit that I even became aware that there were drugs to help control the pain. It happened again three months after the first one. Until the age of 18 I averaged about 2 or 3 attacks a year -- some of them brought on by ERCP's (I've lost count here have been so many now) and others just appearing out of the blue. Actually giving up two or 3 weeks, a year to pain is not such a bad thing.

When I started my final year of High School things got worse. I averaged one hospitalization every 3 weeks -- with minor attacks in between. Over the course of 3 years, I spent over 70 weeks in hospital. I was an honors student in high school, but in Grade 12 my teachers thought that I had developed a drug habit and had dropped out of school. It was not until the end of the year that my cries for help were heard – I missed 357 classes out of 594. I graduated high school on sheer will power. I went to the university on will power -- continuing to get sick and miss school. At the end of my first year, I had no choice but to withdraw from the university. I then went to a technical school -- one that would allow me to do my courses when I was healthy and miss class when I was sick. Sadly after the reality of my illness sunk in they made it quite clear that my enrollment with them was over, as well.

I was skinny before I got sick. Then I lost 50 pounds over the next three years. I had numerous surgeries (stints, papillotomy, gallbladder, sphincterotomy and more) and had built up a debt of over $17,000 in student loans. I lost so much muscle mass, combined with scarring of the muscle sheath of my thighs from pain needles, that I could not walk across the street for milk. I had been a student of dance for 13 years, and I could not walk across the street. Somehow I kept going - I had no choice really. I got a job, and started hiding my illness. I was lucky: It went into remission pretty much, and I was able to control most symptoms with Dilaudid. I built a reputation in my industry; I earned promotions and wage increases. I paid off all of my loans within 2 years of receiving the last one. I worked hard.

Now 3 years later I am almost 25. I have chronic pain that I cannot control anymore without stronger drugs. I have been laid off from my job (not because of illness they say-they decided to cut the most senior member of the team who was showing signs of severe illness and keep the junior members because that made sense)? and have quickly established that I can no longer work the same way I used to. I do not even know how many attacks I have had; now they are just one big continuo attack that never seems to end. A day will go by with no pain and I will spend the whole day waiting for the other shoe to drop. I have tried so hard to succeed and have had my dreams taken away from me by the pain. I am now in the unusual position of voluntarily starving myself -- if I eat I hurt, if I do not eat I starve. Ultimately I have to eat and do, only bringing on more pain and renewing the attack.

I do not know what to do. I am starting to work with my doctor and family to find a way to live with this. It has been over half my life that I have had this disease and I have never managed to get it fully under control. For over 12 years I've put up with variants of "did you eat too much candy/drink too much booze?" or "Let me do more tests to make sure it's not your appendix," and my favorite "I'm sorry but your enzyme levels are not above normal" I do not understand why there is so little instruction on the progression of this disease, such as pancreatic burn out with severe pancreatic neuropathic pain. But, generally the intern of the week decides I'm another drug addict looking for a fix and pushes me to the bottom of the pile. Ten hours later, when I finally see a specialist, I may finally have my pain assessed and treated. .

I am bitter. I am angry. Pain does that to you. I gave up once a few years ago. I was in the hospital for a number of weeks and was being fed through a tube in my veins. I hurt; I had hurt for weeks. I gave up and waited to die. It did not happen (obviously as I am writing this).

Today I sit here in pain, another set of dreams in ruins from the disease, and I continue to live.

Adrian C
Nova Scotia, Canada
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  Andy's Story

March 14, 2003

My name is Andy, age 37, born in Nottingham in the UK.

I worked for a soap company where I used acids to make a by-product from the soap. One day just after my holiday in 1998 I woke up with pain in my abdomen so I phoned my manger to tell him I thought I had food poisoning.  My wife came down stairs and found me rolling around on the floor.  She phoned an ambulance and I was admitted to the hospital with a diagnosis of a pancreatitis attack. A couple of months later, I was rushed in to the hospital again.  This time the doctor took my wife to one side and asked if I was an alcoholic. She told him that I didn't drink. I was discharged again, this time with a date for an endoscopy.

Before this procedure could be done, I was admitted to the hospital three more times. I was finally diagnosed with pancreas divisum and underwent a sphincterotomy, April 1999. At that point the company I worked for advised me to take redundancy as I was off ill more than I was able to be at work. It was almost a year before I was able to return to work, this time at a different job, though. I had off days and on days, and, although I still had frequent diarrhea, I did not have any pancreatitis 'attacks'. 

On 2 February 2003 an 'off day' stomach, turned into an attack of pancreatitis, but this time the diarrhea was severe and I also had weight loss. I was admitted to the hospital.  I have become depressed thinking I was doing well, and no longer had this disease. I had an MRI scan and will meet with my surgeon on 3 April 2003 to review the results and see what can be done next.

Andy W.

UK

Like everyone with AP/CP (or so it seems) my condition is an enigma. I am in the care of Dr. Steve Martin at the UC Pancreatic Disease Center here in Cincinnati. He is probably second to Lehman  in terms of being a guru with an endoscope and his knowledge of treating things like SOD and idiopathic Pancreatitis. Additionally I have a very experienced surgeon who acts as my PCP and admits me to the hospital whenever I have an attack and need to go in. My real PCP is kept informed, consults with the other doctors, and manages the daily aspects, such as medicine and pain management.

I have been hospitalized 12 times for 13 attacks, all since Nov. 1999. I have been in six times in 6 months and four of those the end of December. I just got out from the hospital a few days ago. I have had a lap cholestectomy, 4 ERCPs, one with SOM and the dual Sphincterotomy with stents. I have also had an MRCP, an EUS, and I probably glow in the dark from all the CTs. My attacks always have elevated amylase and lipase often in the upper 10,000's. I have never had a pseudocyst, never required an NG tube. However, each attack is wearing me down and I believe I am transitioning into CP. I have not been pain free in 40 days.

It appeared I had SOD because my pressures where around 400. Things stopped blowing up on after the sphincterotomy. That lasted for about six months, but now I am in the worst cycle of attacks I have ever had. Everyone, but Dr. Martin, wants me to have a repeat ERCP with SOM. Everyone, but Dr. Martin, also believes that if that does not help, the next step would be Sphincteroplasty. What Dr. Martin does believe is that I need to have a total Pancreatectomy with the auto islet transplants (TP/ICT)

Yeah, I am pretty sure I am crossing over to CP. I can hardly eat anything now. I cannot even take a big swig of water. In addition to the Drugs and Percocet, I take 12 Pangestyme UL 20 a day, Nexium, Lopid (to make sure to keep my lipids low although they aren't high) and I take Coumadin because I have a DVT in my left exterior iliac most likely as a complication from one my hospitalizations.

Monday I will be calling Dr. Martin to set up a repeat ERCP with SOM. Maybe going straight to a Pancreatectomy would be best though. I do not know. I will check the database and add my GI's if they are not there. Because this really is something that you cannot comprehend until you have an attack.

I know that unless something special happens I will be in dire straights soon. I am still working, but I have missed a huge amount of days and am arrears. I actually owe my employer money because they paid me a month's salary when only worked five days that month.

May you all be loved and happy,

(Update) March 12, 2003

Today I met with Syed Ahmed, MD and his team at the University of Cincinnati, Pancreatic Disease Center. He felt I was an excellent candidate for pancreas surgery (either Total, or a Whipple). They believe that a total Pancreatectomy is the way to go for me. I will be getting the work-up over the next couple of weeks: CT study of the blood system around the pancreas, meeting with a blood doctor and having tests done, and a metabolic study to assess how well my insulin system is working (I am not diabetic). If all goes well, we will schedule the Pancreatectomy and Islet cells auto transplant. At the University Hospital, the team have performed 22 TP/ICT surgeries in the last two years. A large majority of those patients still require no insulin, or only sliding scale coverage. Only one of the 22 developed brittle diabetes, and that was by design (he had cancer that took up residence in the pancreas so they did not want to reintroduce the islet cells). The team does not believe a Whipple would help my situation., and feels that the remaining portion of the pancreas would continue having attacks of idiopathic acute Pancreatitis.

(Update) May 20, 2003

May 15, 2003 I had the Total Pancreatectomy with Islet Cell Auto-Transplant performed at University Hospital, Cincinnati, OH. I was discharged today.

The entire staff were awesome: surgery, pain management , and critical care teams. The experience blew away my previous notions of combining state of the art high technological medical care with the hearts and souls of the skilled, dedicated workers. I was impressed at the level of care and commitment each unit gave.

I have fared well: I haven't been on tube feedings for days now, and I have a lot of mobility considering. I am on pain medicine. Although I am in a good bit of pain right now none of it is familiar pain. Nothing resembles the old pancreas pain at all. I have incisional pain and a dull ache over the entire surgical area. My body feels like it has been beat with a baseball bat. The most annoying pain is related to the gastric work they had to do; belly fills up really quick when eating, things move on through a little more slowly. All of these pains are manageable and improving. Its just a big surgery. The doctor said I would still require pain medication for a while, and would be weaned off all narcotics gradually later. 

I believe my islet cells are working pretty well though I was only able to receive 280,000 of them instead of the 300,000+ they like you to get. Unfortunately my pancreas was damaged more than initially thought so that was all they could get. I only require a regimen of NPH insulin twice a day. I also have a sliding scale for regular insulin. Time will tell if islet function improves and if I will still need insulin or not, but at least I am not brittle. Taking 4 small shots of insulin a day is a small price to pay to rid myself of Pancreatitis. I will be able to resume work, live my life to its fullest, and not live wondering when the next hospital trip is.

Each day I have a little more ease in moving around. Once I get woke up I have several good hours before I start to get sleepy. I take a nap for a  couple of hours and I am good to go the rest of the day. All in all things are going really well and I feel blessed.

Health and happiness,

Bert

Bert Bolin
Cincinnati, OH
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Bingo's Story

My first "official" diagnosis of Pancreatitis was in 1999. I went to the ER with complaints of the most horrible flank (back) pain. Thought I was passing another kidney stone...after 3 hours they decided to look at amylase & lipase levels which were in the 10000's...given pain meds and sent home (said I shouldn't have pain on left side with gallbladder or pancreas problems).....managed care today..... my PCP thought he could treat me, said I needed Prevacid and said to "take better care of myself"...I don't drink. but isn't that the first thing the docs think of????

Went home, nursed myself back to health....continued with stomach aches all the time, but in the back of my head I kept hearing the PCP saying "how much stress are you under?" ...never known stress to jack up amylase & lipase levels have you ??? ...second major pancreatitis attack in spring of 2001... again A&L in mid 100s this time ... again ER sent me home to nurse myself...lost 10 lb. and can't put it back on...constant diarrhea, or steatorrhea as it is formally called.....ended up in ER...no elevation of A&L this time ... sent home....

Keep losing weight, can't eat without constant pain mid epigastric area radiating to the left flank.....GI wouldn't book me for 10 weeks after last ER visit...Insurance company won't grant me my second opinion with another GI out of state...present Primary taking time to "explore alternative GI's,"...waiting for another big attack....Never had gall bladder scanning done, had ERCP and they said "there is no mass there, we will do nothing"........wonder if I won the lottery if that would make any difference with the type of care I get....

Have to wait to until Jan of 02 to change my insurance so I can go to provider of my choice and get the necessary tests I need. (lesson learned here)...my diagnosis was "Idiopathic Pancreatitis of unknown cause"...I eat very small meals, when I eat that is.... low fat diet all the way...discouraging about how people with this disease are treated.....doctors don't have the answers and the ones that do are very rare indeed...going to ER is a crap shoot...not one of the docs has a good knowledge of this disease nor the pain issues associated with it...I have dull aching belly pain everyday...some days good, some so bad that I can't function.

I pray I find a medical provider that cares enough to take it upon his or herself to really study this disease and the ramifications it has on peoples lives...this is not taught in medical school, ( when these providers graduate from medical school they learn from trial and error...that's why its called a "practice")...very important for patients to be as knowledgeable about their health and advocate for themselves everyday...I am saddened to hear so many stories that it took people years to finally find a provider to help them with Pancreatitis... I can only hope that I find one very soon. 

Bingo

Brandan's Story

For a special article about Brandan from the Sun Chronicle, click here.

Hey there...My name is Peg, my son's name is Brandan who is now 15. Here is his story, and although long, it is still only a part of what he has experienced. I probably could write a book or perhaps even a novel.

Brandan, like most children, loved to ride his bike, hang with friends, and mostly he loved going to school. Due to this disease he is not able to do most of the things he used to, but rather it is a struggle to just stay comfortable due to his constant and unrelentless pain, nausea and fatigue.

They say hindsight is 20/20, and in the case of this disease it is so true. Throughout Brandan's life there have been instances that have lead him to the doctor time and time again, most of the time it was said to be nervous stomach, or due to strep or what we had thought for many years was lactose intolerance. Every time my son would eat, he would get horrific stomach pain, but thinking that everyone gets these, he thought it was normal. (People saying I ate so much my stomach is killing me). Hence, Brandan thought it was a normal thing, doesn't everyone have pain after they eat?

In May of 1997 Brandan was hospitalized for the first time with what was called Pancreatitis. After being hospitalized for 6 days, and almost airlifted to Boston due to the fact that they didn't often see this in children, levels returned to normal. He was released and we were told it was possibly caused by something viral? "That it probably was a onetime thing and he would be fine." In the weeks that followed, Brandan had attacks, but after racing to the hospital, his levels were normal therefore nothing more was done.

Brandan, for many years that followed, continued to have stomach pain when eating at times, but we thought perhaps he ate too much, or it was too greasy, or too heavy. Again thinking still he was lactose intolerant, he steered clear of dairy foods and such. But on May 24, 2000 that was all about to change.

On May 23, 2000 Brandan started complaining of a rash and not feeling well. Thinking it could be nerves because we were planning a trip, we figured he would feel better by the next day.

May 24, 2000, Brandan still was not feeling well, so I took him to his doctor's office to see what was wrong before we left for vacation. We were told it was strep and a pulled muscle in his chest....that he would be fine. This was the vacation that our family had been waiting to go on for as long as we could remember. We were going to Disney in Fla., for the Millenium Celebration. We were all excited but Brandan was not feeling well at all, upon arrival into Fla., things weren't fine. Brandan was up all night vomiting, so the next morning I called the doctor's office back home. I was told to take him to the nearest place to be looked at. We first went to a clinic but they were unable to help us, so we were told to go to the hospital in Disney. It was the closest hospital there was.

Upon arrival at the Celebration hospital inside Disney, the doctor truly thought Brandan had scarlet fever just by the rash that had begun to appear on him. I had noticed it the day before a bit, but it had become more prominent. His pediatrician back home wanted his levels drawn and his doctor there really thought there was no need but did it anyways. Well to everyone's surprise, especially the doctor in the ER, his levels were skyrocketed and he was transferred by ambulance to the Children's Hospital in Orlando. Upon leaving the Celebration Hospital the doctor looked at me and said, "I have seen levels that were a quarter of this in adults that were on the floor begging for relief from the pain; your son is there and so calm," but he knew he was in severe pain and they gave him something to help make him comfortable. This was the start of my knowing my son can tolerate pain, like no other I have seen, and time and time again throughout this ordeal, he surprises me at how well he tolerates the pain at times.

He was transferred immediately into the ICU in Orlando Childrens Hospital, and his first PICC line was inserted. His stay was from May 24th to May 30th of 2000, in Fla. We flew home on the 30th. They had given Brandan a shot of Demerol to hold him until he arrived home, and although we didn't make the celebration at Disney, we drove through the park on our way to the airport, so that Brandan could at least see what the park looked like, for we didn't know when we or if we would be able to return.

Upon arrival home on May 30th Brandan was admitted to Hasbro Children's Hospital in R.I.. His stay at Hasbro was from May 30th to June 13th. On June 5th an ERCP was performed and it was found that he had severe scarring in his small duct and there appeared to be a divisum in his large duct.

July 6th 2000, another ERCP was repeated with a stent placed in the small duct to help drainage. The 7th of July Brandan was readmitted back to Hasbro because of severe pain and vomiting. July 10th the stent was removed in yet another ERCP. This stay was from July 7th to July 13th. We were told by the Dr. that Brandan had Chronic Pancreatitis with pancreas divisum.

July 29th to Aug. 4th Brandan again was admitted for severe pain and vomiting yet again.

Sept 14th to Sept. 22nd Brandan was admitted to Mass. General under a Pedi-gi, due to his vomiting and severe pain. We had admitted Brandan now into Boston hospital looking for more answers, thinking perhaps that Boston was were he needed to be?

Nov. 6th to Nov 8th, Brandan had another ERCP and a EUS ultrasound done at Mass General Hospital (MGH) in Boston. This stay was only a few days. His new Dr. had confirmed what the first doctor had said, but he confirmed it as being Idiopathic Chronic Pancreatitis, with partial pancreas divisum, meaning he was and still is not satisfied that this was brought on solely by the divsium since he told us that 1 out of 5 people have this defect.

His last PICC line and TPN was halted in Nov. so as to start Brandan using his digestive system again. Although he continued to have pain, Brandan was now being seen by Pain Management and was being kept comfortable with duragesic patches and breakthrough meds.

March 21st 2001 to March 26th 2001. Brandan again was admitted to MGH for an attack of Pancreatitis.

April 17th 2001 another ERCP was performed and although the small duct was draining well, they felt nothing more could be done by ERCP. Brandan still continued to have severe pain, again the diagnosis was Idiopathic CP with pancreas divisum.

We also saw another Dr. from Boston at Brigham and Women's Hospital during the months of 2001 thinking perhaps this was or could be genetic but it was ruled out. And since adult Drs. and childrens Drs. are different, we have chosen to stay with his Pedi-gi at MGH. So we it seems for now are like most at a standstill as to where we go next?

In total Brandan has had :

• Numerous Hospitalizations
• 7 PICC LINES
• TPN from 5/00-11/00
• 5 ERCPS
• EUS ultrasound
• Numerous Catscans, Sweat tests, Sonagrams, Xrays, Upper gi's, Ultrasounds, and 8/24/200 MRCP

Brandan recieves the vitamins and minerals his body needs by drinking Slim-fast, plus it is low in fat and he is able to tolerate it fairly well. He eats when is able but only a bit at a time with his enzymes, and usually brings on pain no matter what it is he eats.

Brandan had missed his last few months of middle school, and his first year of high school. We have tried for some time to get him back into school this year, his sophmore year, but due to the pain he experiences along with the nausea and fatigue, he is still unable to go. But our goal is to try and get him in half-days instead of being tutored if it is possible.

He is kept comfortable with duragesic patches and oxycodone for breakthrough pain. He also takes achiphex, and on occasion uses vioxx. When he eats he also takes enzymes. He, like most that suffer with disease, has his good days and bad. All we can do is take it a day at a time.

My son like many others has been accused at times of drinking alcohol - yes even at the of 11, I have heard "he looks so good?", "How can he be that much pain his BP and such are normal?" I could go on...

I dream of the day my son will have no pain. I remember my son one day in the hospital on a PCA pump with morphine. He looked right at me with such a look in his eyes and said, "Mom, so this is what it is like not to have pain. It truly is wonderful." I pray everyday for those words, only I await for them without the assistance of pain medication. I know it can happen, I hope that by telling our story it can help someone else in their search for answers. All I can do as his mom is take it a day at a time and hope for the good days. I continue my search in hope of his cure and will continue to do what it takes to find it.

I dream of the day my son can ride his bike again, can hang with his friends again, and can do what he so loves..return to school.

For all those who suffer with this horrific disease, I pray for a cure, especially for the children, who in my son's case have never known what it is like to have the simple pleasure of food. What is a necessity for life and brings comfort and pleasure to others, brings only pain and agony to those afflicted with this illness.

I no longer worry about what has caused this, or how it happens. My only concern is that it does and that many people young and old alike suffer everyday, without an end in sight. I will continue to do whatever it takes to find the cure, so that no one will ever have to walk the same road we have.

As always... Keeping you and yours in our thoughts and prayers...Keep smiling (cuz sometimes it's all one can do!)

August 13, 2002

Brandon underwent the Total Pancreatectomy and Islet Cell Transplant procedure, performed at the University of Minnesota by Dr. David Sutherland.  See "Brandan's story" link at the top of this section.

May 31, 2003

Long time since we have spoken we often think of how Joey has  progressed since his surgery.  Although I feel Brandan will always live his life with some type of reprecussion from having this disease, especially the length of time that our children suffered, Brandan too has progressed miraculously  and life for him has improved drastically since his surgery in Aug. of last year.  No one knows why his pancreatitis was so debilitating.  I think he was the exception rather than the rule.

Brandan was and still is the exception to the rule for everyone who sees him  at MGH, but his pain management has been nothing short of perfect since becoming the patient of thier pain management team there.  Although since his   surgery we have been seing just his pediatrician now for refills on his pain medication.  Brandan still continues to need pain medication but a very minimal dose  compared to the enormous amounts he was use to taking.  Our hopes are that  there wasnt any type of nerve damage but just as uncharted as the disease itself was so seems the road traveled after his diseased pancreas was removed.

Brandan is not completely free of pain but our hopes are that the residual  pain as I refer to it will over time gradually subside so that he will be  totally pain free, but he too is growing and has gained weight and looks like any other healthy teenager now.  He has traveled a long road but he is enjoying food  now and yes enjoying life also.  I have been pretty occupied lately with my husbands battle with cancer  and it dosent seem like there is enough time in the day.

August 13, 2003

Its been a year, since Brandans surgery today.  Although he does still have what has become known as residual pain?  The reason for this pain in unclear, BUT the pain of the horrific attacks he endured while having pancreatitis is gone.  We no longer live with the fear that the beast called PAINcreatitis will appear.  Brandan has seen many pain specialists who believe that in time the minimal amounts of pain medication he takes will be a thing of the past, and I believe this too.
     My family and I have just returned from a vacation that a year ago was not even thought possible.  We flew (yes Brandan flew) to Montana to see my husbands family and relatives we have not seen in almost 20 years.  I saw the old Brandan emerging, as he played with is cousins, they played cards, and board games, they threw frisbee and played baseball.  Just watching them from the porch of my inlaws home brought tears to my eyes.  These were things Brandan dreamed of doing again, and things as his mom I dreamed of seeing him do.
     Brandan will start his senior year in High School in Sept. again something that was not even a thought a year ago, but a dream at the time.  He has not been to school in more than three years, and although nervous about going, I know there will be no attack to prevent him from doing what he has dreamed so much about.  He is talking about getting his license and driving his car.  Although the fatigue he still feels does hinder him at times from doing all he wants to do at once, I remind him, look where you were a year ago!  He smiles and says "yes but I am better than I was a year ago,."  my repy is always the same, " Just think where you will be in a year from now?"
     As I have said before, although Brandan will live with the reprecussions of this disease for the rest of his life, he is living now not merely existing.  He is eating anything and everything and enjoying every bite.  We do keep check on his sugars and he still remains diabetes free.  The amounts of medication he takes is minimal to what he use to need.  Although the progress very slow, I have said to him time and time again, "Your body has been so very sick for a very long time, give it the time it needs to get better."  and just as we always have "Take things one day at a time."
    Karyn because of your dream, you made our dream a reality.  For three years ago when you answered my email as you do many every day, you became an angel to my entire family.  The inspiration, knowledge, compassion and love you gave us  (although at the time I did not know,) was the power we needed to become our sons advocate and let his voice be heard.

5-Oct-2003

Brandan's residual pain issue is still ongoing  but we have found a new doctor in Boston who believes it could be due to his spleen, after yet another ultrasound and a CT that is scheduled for Sunday  he believes it is enlarged.  I recently wrote to Dr. Sutherland and he said that it has been that way with others also after the pancreatectomy needed to have their spleen removed due to residual pain because of the spleen being enlarged.  I am truly praying this is the answer for Brandan.
 

    Dreams do come true.....They are listening now...."It truly is amazing how one person can make a difference."    "THANK YOU,"  Karyn for making that difference.
Our eternal "THANKS" to all those of the P.A.I. who have walked with us side by side making our journey seem alot easier and a whole lot less lonely.  For without you all Brandan wouldn't have been given his second chance.

As always...Keeping you and yours in our thoughts and prayers....Keep smiling*(cuz sometimes its all one can do!)..TTFN.. : )

Peg Bates and Family
"It truly is amazing how one person can make a difference."

Peg Bates, Brandon's Mom

Dirk Owen Bates   


15-May-2006

Diane's Story

It all started in 1986 when I began to have right upper quadrant pain that started 3 hours after a meal. I was put in the hospital for some tests and ultimately ended up having my gallbladder out. There were no stones, but they called it a "strawberry gallbladder." Things calmed down for about a year and a half and then returned. However, this time it was pain under the ribs in the abdomen.

I was sent to St. Louis to have my first ERCP. I had my first documented case of Pancreatitis after that ERCP. That was when they thought they found the Pancreas Divisum. They confirmed this with an ERCP about 4 weeks later.
I went to Barnes Hospital to have a Transduodenal Sphincteroplasty of the minor papilla (duct). The post-op pain was the most pain I had had up to that time. I had no idea that this was the beginning of a life of pain every day.
Things seemed to calm down for a while until 1992. The pain and nausea returned and the doctors came to believe that I had Irritable Bowel Syndrome. It was treated as such for the next 2 years. I continued to have to return to the hospital every few weeks for IV's, pain meds, and NPO status.

By 1995, I was having epigastric pain after about one and a half hours of eating just about anything. I was referred to Dr. Peter Cotton at MUSC in South Carolina. This was the best thing for me so far. He did an endoscopic ultrasound and ERCP. A stent was also placed in the minor duct to try to keep it open.

By this time, I was taking Percocet for pain and Zofran for nausea. A couple doctors I had tried to say I had a motility disorder (IBS) and should push fluids, eat high fiber, and not take narcotics for pain. When things continued to go down hill, I was eating very little, losing weight, and generally felt puny. I was still working full time at a hospital and most of my co-workers said I needed to change doctors. Therefore, in October of '95 I began going to an internal medicine doctor who I am still with now.

On the first visit he told me, "I have not cared for anyone who has what you have, but I will not give up on you. If this relationship ends it will be because you left." I was in tears by the time he was done. I had already had three doctors give up on me. I knew I could not handle that again. I think he did too.

By December of '95, I had been in the hospital over 10 times. I lived on TPN for 14 months. Once I started  receiving TPN, my body became dependent on IV nutrition, and resuming oral feeds was very difficult. I remained very ill for the next two years.

I was destined to go to the Mayo Clinic, for further consultation. By early 1997, I had endured all the tests the Mayo Clinic could provide. When I left they said they could not confirm a diagnosis of pancreatitis. Dr. Cotton had told me he was sure I had chronic pancreatitis. He said it did not matter that the pancreatic enzymes were not elevated. It did not matter that the Mayo Clinic would not admit that Dr. Cotton was right.

I packed up my TPN, left the Mayo Clinic, went home to continue care with Dr. Cotton. Unfortunatley, the TPN would be short lived, as I developed an infection in my port-a-cath while at the Mayo Clinic. The TPN had to be discontinued.

Since I arrived home, our main goal is to stay out of the hospital. Most of the time that is okay, however, when I feel really puny, the hospital seems like it would be a good thing. In May of 1999, I returned to MUSC for another EUS and ERCP and was hospitalized for 9 days. Things seem to be acting up again now...back to MUSC? We'll see!

Update - 2001

I hate to say things have not improved much. I continue to have pain every day, whether I eat or not. My social life has dwindled to almost nothing. Sometimes I even have to leave church early because I am so miserable with pain and nausea. Even sitting up at the computer gets to be too much after a while.

I have been in the process of trying to get an implanted pain pump for intrathecal administration of pain meds. That's via a catheter inserted in my back and under the skin to a pump in my abdomen. I've heard this route requires much less pain meds for the same relief as higher doses of oral medications. Once again, however, the insurance company is holding things up. They state that it is not a medical necessity, unless you have cancer. I guess if you're going to live too long with the pain, you're out of luck.

I am currently on Viokase and Nexium to help digest my food; MS Contin,Celebrex and Roxanol for pain;Vistaril, and Compazine for nausea; Colace and Miralax to keep things moving; and Prozac for depression.

I know this does not begin to tell of the emotions of all this. I have gone from extreme anger to the lowest depression I have ever experienced. And then, there is the anger and frustration of not knowing when things will kick up again and take control of my plans. It is very difficult to make plans for anything at all because I never know when I'll be splatted on the couch with my heating pad trying to get the pain level down to where it doesn't take my breath away.

My faith in God has help me through some very rough times with this disease, but I have to say that a little bit more understanding and compassion from the medical community would certainly make a big difference in the suffering of all of us that live with chronic pancreatitis every day.

Update - July 2003

After waiting for over a year to get the internal pain pump, I decided to pursue it from another direction. I discovered another pain clinic in Nashville that maintains pain pumps for all kinds of pain problems. With my first appointment, the doctor sent me home with a videotape and written information about the pumps and said I should have no problem getting it. In light of all the waiting so far, I found it hard to believe it was happening so fast. But, within a week I had a referral with the surgeon and was scheduled for surgery on August 21, 2002.

Now it’s July 2003 and, though, it took awhile for things to settle down, as well as having another attack caused by a virus in October and November, I am finishing up my first year with the pump. Unfortunately, after discovering that the catheter was out of place, I had to return to the operating room April 2003. This time, a different surgeon, who was more familiar with implanting pain pumps, inserted the catheter. Things have finally calmed down again as far as pain. I am receiving 0.5 mg of Morphine every hour through the pump. I am needing very little oral pain medications.
The one thing I have learned is that just because I have good pain control does not mean that everything is back to normal. I still have problems with fatigue and can still have acute attacks that seem to come from nowhere. But, the best thing is the trust that I have from my pain doctor. He leaves my pain med doses to my discretion when I can’t get a hold of him to guide me. That really lessens the stress of not being able to contact a doctor when things are going downhill. The journey goes on…

Diane Hollister
Tennessee
dhollis062@yahoo.com

Told by mother, Catherine

My name is Catherine and my daughter Irma, age 16, has chronic Pancreatitis since age 9 years.   She has a rare genetic disorder called WAGR Syndrome as well.   This is chromosome deletion 11p11.2 thru 11p13.

Irma has had  good success with enzymes.   She's been on Pancrease mt 16 since age 9 and they have controlled the "runs".  They are taken during each meal. (we are lucky they don't work for everyone)

Irma has a lipid disorder which they attribute her Pancreatitis to.   I'm not quite sure I agree with the docs.   This maybe a familial situation. With lipid lowering medication, gemfibrozil, her numbers look good yet she still has attacks that require Percocet for pain management.

She had a post surgical pancreatic attack that landed her in the ICU with multiple organ failure as well.   That was two years ago.

Her gallbladder was removed last year and it did help relieve her Pancreatitis.   It seems her gallbladder was in a weird position and was not draining properly.

I'd like to mention she is overweight.   I've seen her go without eating for long periods of time and not lose an oz.   No one can explain this to me.

I have a question about stress.   Does anyone find that stress can trigger their Pancreatitis?   This maybe a silly question but my daughter seems to get worse during times of extreme stress.

Not many people understand this disease.   I find myself explaining it over and over to no avail. Its nice to know you all understand it. Thanks for letting me share.
 

Catherine Luis
New Jersey, USA
cate273@yahoo.com

I was diagnosed with CP in September of last year after 1 1/2 of being sick with trips to ER and hospital, the rea where I used to live was not to aware of CP and only until I moved close to family and a large teaching hospital was I diagnosed with the CP I had lost a total of 125 lb. over the 1 1/2 before I knew what was wrong with me but recently started having a lot of problems with diarrhea after many tests my doctor decided to put me too on Cipro and I'm still on it for just one week and I'm afraid that when I go off the Cipro I will get sick all over again. How long were you sick with the bacterial overgrowth? After researching about bacterial overgrowth I found that some of the medications that I was put on may be harmful and may have caused the bacterial overgrowth. These medications stop the acid in your stomach and therefore kill the good acid that is supposed to be there. This last illness has left me very
weak so I don't get on the computer everyday but I want to thank everyone for all the information about CP that I have learned here.

Jacqueline
rjnattie@blazenet.net

Jean's Story

Jean and I said, "I do,” to each other 21-years ago. Three years after our wedding day, Jean began suffering from what was then diagnosed as Irritable Bowel Syndrome related maladies. The doctors settled upon this diagnosis after repeated enzyme, blood level, ultra-sound, and associated test results ALWAYS fell within normal ranges; the psyche doctors found her to be as sane as a mother with three preschool children can be; and the substance abuse doctors understood she was a lifetime teetotaler.

We now know these were most likely Acute Pancreatitis attacks that eventually led to her present Chronic Pancreatitis (CP). It was about 10-years ago the doctors finally discovered, they are after all only practicing medicine you understand (Grin!), Jean's CP.

The story given below loosely relates Jean's odyssey. It is VERY long and can be summarized as follows:

a) She has experienced tremendous weight gain as opposed to weight loss as is common
b) She has been diagnosed with hypothyroidism
c) Loss of being able to drive, hold a job, lift heavy objects, and remain alert
d) Continual 12-mg per hour morphine dose for pain control (seven-plus years)
e) Enzymes usually within normal ranges
f ) A Distal Pancreatectomy at the Mayo Clinic provided little relief
g) An experimental splanchnicectomy surgery that provided little to no relief (see:
    http://www.audio-digest.org/pages/htmlos/02352.25.7812620940736251606/GS4711)
h) She is loved and loving. She is magnificently talented, kind, and cheerful

I encourage you who suffer from CP to accept support, trust the giver, believe you are loveable, love the unbelieving for they are ignorant of the disease, cry when acute pain flares, laugh when your pain pump alarm sounds in the middle of a church service, and hope evermore.

The soul who ardently chooses to yoke with you, as you are, is the one who is being made better. With you, they experience an extraordinary life. They observe things horrific and heavenly. They learn to love. I am altogether thankful for Jean's love and for what we have shared together these many years. It is a joyous, arduous journey and I would choose to join on again if I had it to do all over again.
 

Dear reader, please be advised the following is quite lengthy. It is provided for those who enjoy reading and I will not be offended if you choose not to read it. Thanks once again for being one who enriches others by your care and input.

<<<<<<<<<<<<< Beginning of Jean's Story >>>>>>>>>>>>>>>>>>>>>>>>>>>
Jun 63) Gina Fischer sweetly blessed this world. Five minutes or so later, Jean Fischer, an identical twin sister, also sweetly blessed our world. Her arrival surprised her mom, dad, and doctors! Wow-- great things come in two-for-one packages! Place of birth: Sacramento, CA

Aug 75) Jean and I began a puppy love and piggy fight relationship. She is an adorable retriever and I am simply an uncouth boar. Truthfully, Jean's undying love was and remains an amazing testimony to her sweetness.

Oct 81 - Jun 82) Pastor Earhart joined us in marriage on Oct 16 in an informal, cozy ceremony with several of our friends and family present at my parent's home in Selah, WA. I entered Air Force Basic Training at Lackland Air Force Base, San Antonio, Texas on Oct 19. Transitioning from being face to face with my darling to being face to face with my drill instructor was a tad bit stupefying. Basic Training was completed and the Air Force sent me to Chanute Air Force Base, Illinois where I am set to be trained as an Auto-Pilot Electronics Technician. Instead of becoming an electronics wizard, I am trained as a Statistical Analyst. This was fitting for one who cheated on his math exams-beware your sins will find you out. Our daughter Aleassa was born while I am stationed at school. God is so good to entrust two too-young parents with such a precious giggling, charming, and beautiful gift. I received stationing orders directing me to Spain in an unaccompanied status, which is military jargon meaning my family cannot go with me unless I paid all of their traveling and living expenses. Thankfully, one of my classmates swapped her orders for mine. My family and I are going to be Upper Peninsula of Michigan (Yoopers) citizens at K.I. Sawyer Air Force Base.

Jan 83) Our son, James, was born prematurely and weighed a little more than two pounds. God used this unexpected event to begin softening my heart and turning back toward him.

Jun 84) Our baby of the family baby Philip was born. He also tried to barge into this world as a preemie but Jean endured several boring weeks of strict bed rest to frustrate and prevent such an early, eventful entry!

Nov 86 - May 90) We arrived at Wurtsmith AFB, MI and proceed buying used everything to replace that had been in storage and was later sold to finance our cross-country trekking! It was during this time that Jean began experiencing abdominal pains and migraines that would cause her to be forced to stay in bed for several days at a time for each bewildering episode. Many doctors were seen but none could ever identify the cause of her disorders.

Jun 90) Rather than re-enlist in the Air Force and be forced to move due to Wurtsmith's soon closure, we decided to accept a Civilian Federal Service position at Luke AFB in Phoenix, Arizona.

Jul 90) We arrived in Phoenix and are warmly greeted by a balmy temperature of 117-degrees.

Aug 90 - Oct 91) Jean's mysterious problems persist. Many doctors remained baffled because all tests return normal findings.

In June 1991, we moved into a beautiful new four-bedroom custom built home in an exclusive Northwestern Phoenix suburb. Jean was working at a children's clinic and I was working full-time as well as part-time and overtime.

In October 1991, Jean experienced a severe gallbladder attack while in the doctor's office during a fatty-meal test. She is rushed to the hospital for an emergency gallbladder removal. We are hopeful her mysterious pain was now eliminated.
Jean's office let her go because they cannot leave her position vacant while they await her recovery from the surgery.

Nov 91 - Dec 91) Jean enjoyed great, vibrant health. She enrolled in a nurse's aid school and earned excellent grades. We began experiencing financial struggles. Our income was drastically reduced by Jean's loss of work and my loss of a $360 per week part-time job.

Mar 92) We accept an offer to come and serve as the Youth Pastor at Calvary Baptist Church in Yakima, WA. Pastor Quinlan was a 68-year young pastor whom I loved and wanted to help. We planned to arrive in Yakima soon after our children's school year was completed for the 1991 - 1992 session.

May 92) Jean and the children were struck broadside at an intersection by an older woman who disregarded her red light signal. Jean and the children were taken by ambulance to the hospital. They were all released the same day after several hours of x-rays and examinations. Jean was more seriously hurt than were the children as she struck her head on the side-window, her left shoulder on the doorjamb, and her right knee on the steering column. We postpone moving to Yakima after speaking with Pastor Quinlan. It is assumed Jean's physical therapy and insurance claim requirements
would be settled in about three months.

Jun 92) While visiting Gina and Leonard at their home in the Irvine, CA area, Jean had another mysterious pain attack. She was taken by ambulance to the Mission Viejo Hospital where she remained for three weeks. After oodles of tests, ampullary stenosis is determined to be the pain's cause. This diagnosis describes a narrowing of the pancreatic bile duct. The doctors advised us to have surgery performed upon our return to Phoenix.

Jul 92 - Sep 92) Many further tests were performed and at last the surgery was performed to reopen the bile duct. After recovery, Jean once again felt marvelous.

Oct 92 - Mar 93) We anxiously await the car accident settlement. Jean began dropping things when she held them in her left hand and she was unable to lift her left arm fully over her head. In November, my Air Force Reserve unit was chosen to go to provide air cover in Northern Iraq. The day after Thanksgiving my turkey digested in several different time zones while we are in-flight to the country of Turkey! In March, Jean's shoulder is operated on to repair her rotor cuff.
During this month, our financial troubles resulted in the returning of our house to the lender before foreclosure proceedings were further advanced.

May 93) A strange mass was discovered in Jean's body. The mass was removed and subsequently found to be related to a rare disorder.

Jun 93) We lived in a small one-bedroom apartment from April through June in order to save enough money to finance our move to Calvary without relying on funds from an accident settlement still in the offing. The children became fond of our shower dwelling snails that took up residence in the drain. Aleassa could always be counted upon for a scream or two every day as she greeted the little horn waving critters. The snails seemed to disappear each time Morton's salt was around. Jean and Aleassa adopt several abandoned kittens whose mewing could only be satisfied by very expensive canned kitten formula! The church sent us an additional $600.00 and off to Yakima we went!

Jul - Aug 93) We lived with my parents until I could find a part-time job to supplement the $800.00 per month salary given by the church. Because homes rented at a minimum of $700.00 per month, a bi- vocational status was necessary. Benton Dover, a Christian business owner of a computer sales and support shop, employed me. I became the Education Director of computer and software training at Computers Northwest! God was so good to give me a job where I could both teach and learn to be a better teacher! Jean began to experience pancreas type pain again.

Sep 93) Jean is admitted to the local hospital in great pangs of crippling pain. She suffered terribly for three days until a potent, continual dose of Demerol was begun. She remained in the hospital for about six weeks.

Jan 94) We traveled to the Virginia Mason Clinic in Seattle, WA. They admitted Jean and performed a second surgery to repair her pancreatic bile duct. She did not receive any relief after this surgery though! She was sent home after a few weeks and remained on a potent level of narcotics.

Feb 94) In hopes that a pain clinic's methods might be effective, Jean once again entered the Virginia Mason Clinic. After ten days with no advances, she was brought home under the influence of narcotics. After many months of living with parents, we were able to move to our own place.

Mar 94 - May 94) Jean was once again admitted to the local hospital due to severe pancreas pain. She remained for almost three months.

Aug 94) The University of Washington Pain Clinic became Jean's new home away from home. She endured their extensive program for its allotted 15 days. Once again, all was to no avail and she was sent home on a high level of narcotics. She experienced another hospital stay toward the end of the month at our local hospital and remained
there until the Mayo Clinic visit.

Sep 94) We are referred to the Mayo Clinic at Scottsdale, AZ. The doctor hoped Jean would be comfortable enough to endure the 1,600-mile trip and thankfully, her parents gave us the blessed privilege of using their motor home! Upon arrival in Phoenix, we received great love and hospitality from our friends who offered their homes to us to live in until we return home!

Sep 17, 94 - Dec 15, 94) Jean and I arrived at the Mayo Clinic and were wonderfully blessed by the hospitality of everyone from the parking lot tenders to the doctors themselves! We traveled with the impression and hope the clinic would accept our state's medical Medicare and company's medical insurance. They did not! We were told we would need to pay for all treatment in advance out of our own pocket. We paid $1,000.00 for the first few tests and then asked God to intervene with a heaven sent torrent of cash or other means. We met with Dr. Keate and were impressed by his compassion and thoroughness. We told him of our financial plight. We were both lightning-struck when he called the financial advisor to tell her to consider Jean a "Research Patient.” Within five seemingly eternal minutes, God had provided for Jean's medical care at the Mayo Clinic! If Jean were to receive college credit for every test she underwent
at the Mayo Clinic, she would be a Ph.D.! Yet, except for one test, all of her tests returned within healthy ranges. This was frustrating to the doctors and Jean alike. In October, Jean was once again hospitalized due to severe pain. I
talked with Mr. Dover and he told me he and his dear wife Shari were not only praying for us but had decided to keep my medical policy active until our return to Yakima. Such kindness enabled us to let Jean remain hospitalized while the Mayo Clinic doctors deliberated. After several days replete with nerve-wracking events, it was decided to do an exploratory surgery. Because of the pancreas' location, this was a most delicate and undesirable surgery. Thankfully, the surgery was performed because they were finally able to SEE that Jean DID IN FACT suffer from Pancreatitis in direct opposition to what all of the years of previous testing had implied. The surgeons removed about two- thirds of the organ in hopes of relieving Jean from suffering. Jean recovered quite nicely and we went to her twin's house for a
joyous Thanksgiving. We returned to the Mayo Clinic after the holiday for a follow-up visit. She was given a physical by Dr. Keate and all seemed to be well at last! Yet, a few days later we were once again back to the hospital with the same suffering by Jean. It was decided to consider performing an experimental surgery the Mayo Clinic surgeons had never performed. The doctor perfecting this surgery was consulted and he agreed to come and supervise the Nerve
Block and Removal surgery (splanchnicectomy). The procedure required cutting from just under the sternum bone and around to the vertebrae! By mid-December Jean was feeling great! Feb 95) I began a new job with a local copy and fax machine company. I was released from my previous job due to low sales volume and having to be gone so often with Jean. Jean's pain returned once again!

Mar 95) Jean was hospitalized. We were sent to the University of Washington Medical Center for a complete reworking of her tests and after two weeks we returned home with no answers. Jean remained on a continual infusion of morphine.
We moved back in with parents due to money shortages and Jean's poor health. The doctors did not want Jean to remain home alone on such a potent dose of narcotics.

May 95) We returned to the University to meet with the Head of the Organ Transplant Department. He was not optimistic that complete pancreas removal or a transplant would help Jean. We are scheduled to return to Phoenix to settle our car accident claim from over three years ago.

Jun 95) Back again in Sunny Phoenix. Unbelievably, the lawyer defending the lady who ran the red light paints Jean as a drug abuser and fraudulent person. This scoundrel had gone through all of Jean's medical history and had another doctor also review these records. The doctor stated her medical data was consistent with a drug seeking and mentally imbalanced person. The arbitration judge declared the defendant to be 100-percent at fault and yet awarded us damages at less than half of our medical and legal expenses! Thankfully, our medical insurance had previously covered a majority
of these bills but we were still hurting morally. We spoke with Dr. Keate and he recommended we pursue the pancreas
removal and islet cell transplant.

Jul 95) We returned to Seattle and relate Dr. Keate's recommendation to the transplant doctor. He does not desire to do this procedure since the mortality rate within five years after such surgery is unacceptably high. We were most discouraged.

Aug 95) Jean was hospitalized again for about two weeks. She returned home on a high level of narcotics. We awaited further direction from the Mayo Clinic and the University of Washington.

Oct 95) Another heart-squashing day is endured as I am choosing to file bankruptcy to escape the burdensome hounding of the over three- dozen creditors we owed due to medical and income reversals. Humility was hotly pressed into me as my screaming, bawling, odious pride was being pressed out of me. My boastful character as one whom
ridiculed and derided those who selfishly hoarded Medicare benefits because they would not work was being transformed into a gentle character who of necessity receives Medicare thankfully so his wife does not suffer.

Nov 95 - Dec 95) Jean was admitted to the local hospital. The doctors remained perplexed concerning the care and elimination of Jean's disorder. A Grand Canyon deep spiritual low was reached as the doctors recommend admitting Jean to the Nursing Home for continued care Our children and I were deeply discouraged at this news. Christmas is
supposed to be a season in which a family rejoices together. Thankfully, I was able to learn how to administer Jean's medicinal and nutritional intravenous dosages so she could come home. With nursing assistance from home health services, we enjoyed a blessed time together.

Jan 96) We returned to Virginia Mason Clinic. After several days, they decide Jean should be enrolled in a drug abuse rehabilitation program. We hotly objected and quietly left!

Mar 96) We chaperoned our Youth Group's annual College Days trip to Pacific Coast Baptist Bible College in San Dimas, CA. While there, Jean and I understood that it was time for me to complete my Pastoral Theology studies.

May 96) The local doctors are encouraged by our pending move. They believe we will be able to receive possible solutions to Jean's malady at UCLA, Stanford, or one of the other major medical facilities!

Jun - Jul 96) Jean is admitted to the hospital. We prayed she would quickly pass through the Pancreatitis attack and that we would be able to proceed with our moving plan. Jean was released for travel and we began preparations for a mid-August move.

Aug 96) Arrived in Sunny Southern California! Gina and Leonard offer to let us live with them until enough money is
saved for an apartment. I will have to travel over 50-miles each way to school.

Sep 96) The car broke-down on the very day of registration! Jean's tender heart led her to sell her Lhasa-Apso puppy to Gina's neighbor so that the car repairs could be made. The repairs were made leaving us near penniless upon my arrival to the registration process. Dr. Jones, Pacific Coast Baptist Bible College (PCBBC) Executive Vice- President, waived the full amount due and allowed me to enroll with a promise to pay the remainder at the next billing cycle. BILLS for schooling became due for our children and me. How could I ever pay them when I had been unemployed since our arrival in California? Jean and I covenanted with each other to tell no person about our financial needs. We went before our Heavenly Father and trusted Him. A dear anonymous Saint called the college and the Christian school and paid for our entire year's book and tuition bills! These amounts were somewhere in the $5,000.00 range!

Oct - Dec 15, 96) Jean was hospitalized many times and seen by many specialists. These men and women, whom we anxiously trusted for revelation concerning Jean's desired cure, are now dejectedly reporting her condition is beyond present day medical cure! Sadly, her life may be one complicated by continual pain controlling medication dosing. All that remained for help was morphine and other assorted pain and nausea controlling medications.

Dec 15, 96) I am employed at Staples. The hourly wage was quite low and I despaired ever being able to afford to rent an apartment nearer to the college.

Dec 20, 96) Saint Anonymous once again blessed with a huge, unexpected amount of $2,400.00 to be used for Christmas and moving expenses! Dr. Jones said we could buy an RV and live on campus. We are now enabled to do so! We moved in to our 26-foot well-used RV and are thankful we are also able to use a 20-foot by 15-foot shed as our living room/spare bedroom. We nickname the shed as our "Addition.”

Jan 97) Dr. Jones rocked our world during registration week by choosing me as the newest staff member at PCBBC! I am the information systems manager and the assistant for Dr. Onley's Extension courses. After a late-night guarding shift, I checked on Aleassa while she was sleeping in the RV and found the plug-in deodorizer melted and ready
to burst into flame. God was so good to keep our daughter safe.

Feb 97) Jean's medical disability goes into effect. Wow-We become debt free after depositing the $4,000.00 USD check SSI sent to cover the months she was disabled but awaiting an answer! What an amazing envelope this was to find lying in my P.O. box.

Sep - Dec 97) Jean's health continued to toss her back and forth between feeling awful and feeling savaged. Jean's doctor remained a compassionate, witty, and skilled physician who was as perplexed by her condition as were his peers. Dr. Randolph, PCBBC's President, agreed to let us remodel the abandoned campus print shop into a three-bedroom apartment. Saint Anonymous provided another out-of-God's-blue-sky gift. This time the amount was $3,000.00. We were able to use about $1,200.00 dollars to purchase drywall, concrete, a shower stall, plumbing and electrical fixtures, studs, paint, and other necessities. The remaining $1,800.00 was taken by the college to be used to prepay 12- months’ rental of the print shop we were remodeling with our own funds.

Jan - Apr 98) I returned to a full-time course load. My waking hours were consumed by my responsibilities as a Campus Security Guard, Extension Department Assistant, Computer Lab Manager, Full-time student, father, and husband. Praise be to God for providing sunny slopes where one could take an afternoon siesta. Rumors began to bounce about regarding PCBBC's property being sold and the campus moved to the Mid-west. Steve Reisner, Craig Wilson, Craig Brown, the men from Yakima Bible Baptist Church, Bret Ekard's lariat, and many students toiled with my family and I to complete the apartment remodeling project. We moved in and rejoiced-a lot! It was so good to be out of the RV and
addition.

May 98) A decision was made to sell the campus and move the college to Oklahoma City, Oklahoma.

Jun 98) Numerous semi-truck loads bearing PCBBC's equipment and staff household belongings are packed by our sweating souls. My family and I stuff all of our possessions into a semi-trailer and wave goodbye to them as they are carted off toward Oklahoma. All of the staff departed for Oklahoma while my family and I remained for a few weeks longer to provide campus security through the end of June. We are prevented from making the move because a legal wrangling that ensued amongst many parties led to loss of available monies to fund our move.

Jul - Aug 98) I am employed by SilverStone Software Incorporated as the Manager of Web Developer Solutions. The company flies high as one of the dot-com darlings and we believe our online payroll product will be launched sometime in 1999. I am given stock options that will be quite valuable when the company is able to offer public stock.
We lived with Gina and Leonard for two-months while we saved toward gathering enough for apartment rent, car license, and other necessities.

Sep 98 - Aug 99) The children attended Liberty Baptist Church's Newport Christian High School. Enough money remained from the last Saint Anonymous donation so that the school bill was paid in full. Jean's monthly disability payment was stopped because the family's income is too great. When I spoke with the caseworker, she told me if
Jean and I were cohabitating then Jean would be considered as a single mother in need but since we were married, our income was considered excessive. Jean accepted a job offer from JoAnn Fabrics and began blessing those
about her by her creativity, joyfulness, good humor, attention to detail, and productivity although heavily burdened by Morphine's and pain's effects. The manager began to love and confide in Jean as a true friend. The company does well and delivers its first release to our client. Gerald Blackie, our CEO, astounds everybody with a surprise, expenses
paid "bonus" trip for employees and their spouses to The Atlantis Resort in the Bahamas! Jean and I enjoyed reveling together in God's splendid tropical paradise. The resort's attractions included enclosed water slides through shark-populated tanks, underground passageways leading to countless pools of fish, vegetation, and spiny creatures, and miles of unspoiled white sand beaches. Jean was hospitalized several times during this 12-month period. Each
stay and doctor's visit tended to erode the hope a cure would ever be found. Saint Anonymous once again blesses our family by paying the children's tuition for the entire 1999 through 2001 school years! Sadly, Liberty decides to shut down the high school after the 1999 session. Crushing waves of sorrow pummeled Aleassa and our family while we
watched Don, her best friend, being called to Glory during a weeklong coma. On his way down from West Coast Baptist College in Lancaster, California to pick up Aleassa and the boys he was involved in a horrific car wreck. They were going to enjoy an afternoon Angels' baseball game. We decided to move back to the San Dimas location so that Aleassa could complete her senior year with her Lighthouse Baptist Academy friends instead of having to make new friends in a new school. God's ways are so unpredictable but always good.

Sep 99 - Jul 01) June 2000 was a happy mixture. Aleassa graduated, my parents and our adopted Uncle Bill attended the graduation, we fellowshipped with friends and loved ones at Ruby's on the Newport Beach pier, and we received a rebate from Ruby's after the manager felt our pain from having to wait for over two-hours to be seated. Jean's health left her feeling miserable on her good days and deathly ill on her bad days. We continued with doctor's appointments,
hospital stays, and prayer but no breakthroughs were seen. Our company was thumped by the flagging economy and forced to layoff several employees in June 2001. I am one selected to be laid off. Donna Kahn, my compatriot, went to our CEO and asked that the company allow her and me to enter into a job-sharing agreement so I can be retained. The CEO was astounded one would care for another so greatly and agreed. Being on half-pay was painful but much better than no pay!

Sep 11, 01) Jeri Jo, my sister, called and asked me to turn on the television. Our family, as so many others upon this globe, were stunned and driven to call upon God's hand of protection.

Oct 01) Jean and I celebrated our 20th Wedding Anniversary. Dining on steak and lobster in Hawaii was postponed due to our financial straits. We enjoyed each other’s company while nestled in the local Denny's and talked about God's wonders in bringing us together and perfecting each for the other. Jean has remained so gracious, patient, and encouraging throughout all of the fits and starts we have experienced in our journey together.

Nov 01) Jean's health nose-dived and she was hospitalized. Upon her release, she was unable to return to JoAnn's. Her creativity remained high as she busied herself by turning out brilliant Daisy Kingdom dresses for oodles of little girls in our church and for friends. It was so fun to go to church and see little girls delightedly twirling in Jean's creations.

Dec 01 - Jun 02) Our budget remained high wire, wirewalker tight while we caught up on the boy's tuition payments, Aleassa's tuition payments, overdue bills, and monthly expenses. It was good to know our Father was constantly caring for our needs. In May, Philip was privileged to attend the weeklong A.C.E. Convention at Flagstaff, AZ. What Philip did not know was that James had lent the family money so Philip could attend! James' love was once again manifested when he voluntarily loaned the remainder of his savings, $2,200.00 in total, so the outstanding tuition could be met.
The money he had saved to begin his photography career was freely offered so others could benefit-such love. June was filled with graduation banquets, last minute course work completions found to be necessary after an administrative  oversight was discovered, yearbook editing cram sessions, and at long last a Graduation ceremony. Aleassa, Jean, our relatives, and I were elated to witness our two young men bust through the daunting challenges blocking their way toward graduation's goal.

Jul 02) Ouch! I was placed on half-pay status again as the company continued to sputter while attempting to add clients. The CEO accepted my proposal to take over the janitorial duties in exchange for the company paying my monthly health insurance premium. I become software coder by day and toilet scrubber by night! Jean was able to travel along with Gina and Leonard and their five children on a trip to visit the parents in Washington State. Being able to visit with Jean's mother encouraged the kids and the twins as they enjoyed fellowshipping with their miraculously recovered mom.

Oct 02) In order for the company to cut cost, one more time, the entire IT department, myself included, were released.. One of the remaining executives went to the CEO and stated they would either accept placing him on half-pay status or keep me on at full pay or else he would walk! They accepted his ultimatum. God is so good and unpredictable. I talked with Kevin and Donna, my two IT compatriots, and told them I would go out the door with them if they believed my
unexpected treatment was unfair. They lovingly counseled me to remain onboard until the first new opportunity arose to jump a flaming ship. I still feel as if I let them down by remaining onboard. Jean was diagnosed with and began treatment for hypothyroidism. This condition would explain her recent heart palpitations, difficulties in breathing, massive water retention, and constant fatigue.

Nov 02 -Present) Jean's conditions remain. The company's future once intensive care bleak with two software behemoths contemplating a buyout is now dead as the Alerio Corporation was dissolved on January 31, 2003.
I am in an unemployed status. Thankfully, many full-time ministry as well as software developer opportunities continually crop up and I am actively pursuing God's will as I talk with the hiring authorities. Walking with my Father constantly, I roll all my care upon Him as a beloved child! When I simply speak the heartfelt, faith born words, "Father I trust you and love you,” peace is mine. What splendor, what joy, what reality!

Joyfully about Business,

Daniel E. Burrow for Jean Burrow
Daniel E. Burrow
Pomona, CA
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John's Story

March 22, 2003

My name is John. I am 39. I have just returned from a 6-day hospital stay for something I never knew existed before last week. To say this has been a week that will change my life is a gross understatement. Naturally as this was my first episode my thoughts are racing over the all-important question, is it acute or chronic. After reading many of the posts here and sufferers' stories elsewhere I cannot believe the horrible suffering so many endure on an ongoing basis with no relief in sight. To those who share your stories, experience, and advice I can only say thank you, god bless you, and thank god for this forum.

It began last Saturday after an evening of pizza and beer. Around midnight I began to get that feeling that you all know only too well. Not knowing what lie ahead I figured it was just a bad case of indigestion. By 6:00 AM, I was in ER with IV's being carefully fitted by caring staff. Not only was this my first bout with Pancreatitis but my first stay in a hospital ever. Today (Friday) I was finally recovered enough to be released but I still feel a little of the monsters grip. Doc says this is normal.

I have been a long-term alcoholic for close to 20 years. I stopped many times for a while but always went back to drinking mainly because of the combination of fun times and in my case a lack of real consequences. I was one of those alcoholics who functioned well enough that there never was enough motivation for me to want to stay sober. I figured since I stopped so many times I could if I ever really needed to. The classic denial. I know what I am saying is
something heard time and time again from many of my alcoholic brethren usually to no avail but this time I know I must. You might say I now have the motivation. Even if I am one of the lucky ones who never has a reoccurrence, I will NEVER forget this experience and the only thought worse than reliving the last week is the prospect of living it continuously for the rest of my life. I will begin with AA first thing tomorrow. Wish me luck on the long road ahead.

I can now only hope and pray that I haven't done irreversible damage and that as long as I uphold my end of the bargain and stay clean and sober that I haven't condemned myself to a life with the chronic form of the disease. I realize this may be wishful thinking. Thus far I have not been able to find any information on the long term prognosis of those in my position, only the often repeated iron clad sage advice that anyone with even the slightest hint of Pancreatitis should never again go near a drop of alcohol and that a majority of CP sufferers are alcoholics (according to the limited research I have done to this point).

Unlike many who post their stories who are innocent victims, I have only myself to blame. The thing that gets me is that like most, I always figured liver disease to be the major consequence of alcohol abuse and in my state of denial; I figured that I would get some warning and could stop in time to avert major damage. I get yearly blood tests and watch my liver enzymes closely. I never had any idea what Pancreatitis was nor how sudden and destructive it was. Denial can run so deep and deceptive.

Thanks for taking time to listen to me. It is so reassuring to know this group is here.

 John
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Kristin's Story

In July of 99, I weighed 230lbs. My appetite began to diminish and I started having problems with diarrhea whenever I ate. By October 99, I had lost close to 40lbs. with out trying. One day after eating lunch at a restaurant, I started having severe pain that radiated to my back. I went to the ER where I was told that I was dehydrated and possibly had a gallbladder problem. Two days later I went to my PCP and she admitted me to the hospital with dehydration and pain. I was there for a week during which several tests were run and nothing conclusive was found. After leaving the hospital, I continued to lose weight and have problems with diarrhea and intermittent pain. In December, my GI doctor ran a blood test, which she said, would probably not show anything because what she was testing was rare. That was when I found out that I had malabsortion syndrome and was started on Viokase. That seemed to help for a while.

By March of 2000, the pain started again as well as nausea and vomiting. My weight had gone down to 170. My gallbladder was removed and again my problem seemed to be solved at least for a short while. At the end of August, beginning of September, the pain started again and became more severe. I thought I might have a kidney infection except that I was also experiencing nausea and vomiting. My PCP at the time did a CT scan, which showed the tale of my pancreas to be slightly inflamed. About 5 or 6 days later I went to the ER and was admitted for 5 days. It was at this time that I was diagnosed with chronic Pancreatitis.

I was home for 3 days and readmitted for 9 days to have a central line put in and start TPN. I had my first ERCP at this time, which showed pancreas divisum, and I had a stent placed. My weight was 148lbs. I had two ERCP's after that for a sphincterotomy/stent placement and stent removal.

I was back in the hospital for a few days in December for pain control and not being able to eat. On January 17, 2001, I reentered the hospital for severe pain, dehydration and malnutrition. I was started on TPN and IV dilaudid 4mg every 3hrs for pain. In the beginning of February, I was transferred to MUSC for a lengthening of the sphincterotomy. One week later I was transferred back to Kennestone hospital to be restarted on TPN and for pain control. It was then concluded that my chronic Pancreatitis was due to pancreatic divisum and small duct disease. I was finally released March 6th with a G-J tube in place. Since then, the pain stayed constant, I am on nocturnal tube feedings as needed and dilaudid 4mg po q4hrs and Mepergan Fortis 50/25 for breakthrough pain.

I have had three hospitalizations since then, each lasting about 7-10 days. I was in Kennestone in the beginning of April, the end of June when my last and fifth ERCP was done and in Northside at the end of August. When I was in Northside, they put in a port a cath which I was actually happy about because my veins are almost worthless at this point. I was released and sent home with TPN for the first time. I have an absolutely wonderful pain doctor, Dr. Charles MacNeil, which I credit for me not going crazy during the last year. As much as he and I tried though, we were unable to get the pain under much control. We had tried the celiac block two different times and now my body was starting to become tolerant to the dilaudid and I was afraid to keep taking more and more and more especially considering my body is very sensitive to pain medications as far as nausea and vomiting go.

On September 17th, 2001, my pain doctor implanted a programable intrathecal pain pump. I was able to tell the results right away. Because the medicine is going straight into your spine; you have the ability to use a lot less with better results. Also there is a constant level of medication in your system which is very helpful. I know a lot of people with this disease have worse pain in the evening and at night. My doctor programmed my pump to give me an extra bolus of dilaudid at 9pm and 2am which has been quite helpful to me. Also, this is the first time that I have at least some confidence that I can stay out of the hospital for an extended time.

I am in the process of getting insurance approval to be able to go to Minnesota and have Dr. Sutherland perform the pancreatectomy and islet transplant. I am praying a lot about that. It seems like the only way that I have to have a 'normal' life again. Before I got sick, I worked 40+hrs a week, played softball and was very active in church. I am no longer able to work or drive and am usually afraid to plan something since I don't know how I will be feeling. This disease tends to have tons of hills and valleys. This disease affects more than your physical condition. It can cause depression, loneliness and major financial hardship. Before I got ill my credit was awesome. Now a year later I am having to file for bankruptcy. My biggest wish as far as the future is that physicians will be more willing to learn from their patients instead of just giving up and passing them on. I also wish that there will be more widespread knowledge about this disease so that we do not always have to fight for rights with every doctor, hospital, insurance company, etc. Another wish is that the disease will be recognizable enough so that patients are able to get financial help sooner and more easily. My final wish is that one day a cure will be found so that nobody has to go through what I and others have had to face.

I have to say that I have learned a lot about life lessons from this disease. I have learned that I have to have hope and I cannot depend on others to give it to me. All my doctors say my prognosis is fair and poor. Despite what they say, my ability to have hope has helped me to make it this far with some brain intact. I have learned to find joy in the smallest of things and try to share that with others.I have learned that no matter what I am NEVER ALONE.

God Bless,
Kristin
krisinjuly@aol.com

March 27, 2004 Update

I don't in any way regret having the Total Pancreatectomy and Islet Cell Transplant. As far as I was concerned, there was no way that I could pass up something that was my only hope, and despite everything, I still feel that way. The first and most important thing is the fact that I didn't stop contact because I "got better and didn't need you” anymore. Actually, it was pretty much the opposite. Apparently I was quite critical right out of the Pancreatectomy and islet autograph only I wasn't told about it till quite a bit later. Luckily, with God's grace and several bags of blood and platelets, I made it through. I also had to stay in Minnesota much longer than the others; first in the hospital three and a half weeks and then moved into a transitional center (like a nursing home) for another three and a half weeks and then back to a boarding house for another week till I could finally go home.

Unfortunately my results were not too great. I kept my hopes up that my results would end up getting better as I was told that recovery would take anywhere from 6 months to a year. I was absolutely delighted to have the ability to eat things that I hadn't been able to have in such a long time. I'm sure you can understand. It took me a long while to have the ability to eat enough calories and I stayed on TPN for a little over a month and a half. For some reason I had it in my head that as soon as they let me eat, I would be able to enjoy a six course meal, but of course there is no way you can eat a lot after barely eating anything by mouth for the last year.

I was very excited when I woke up because I found out I no longer had a feeding tube. I am a brittle diabetic due to the pressure of the portal vein of the liver (which is where they insert the islet cells) rose extremely high and basically killed all the islet cells. There is an incredible amount of pain after that surgery. In the first few days it seemed there was no way to lessen the pain even a little bit; but eventually the pain did get bearable.

After the surgery up until I got off the TPN, I supported my weight with the IV pole. The kind they had was constructed in such a way that you could kind of lean over on to it in order to support your weight. Once I finally got finished with the TPN and they took the pole away, I tried to get up and walk only to realize I was unable to do it without anything to hold on to. I don't know if I could ever explain what it felt like or what was going on in my head when I realized I couldn't walk on my own. I didn't let myself freak out or even rant and rave or raise a stink because there was already so much to worry about just trying to recover. I just figured my body was weak due to the surgery.
I simply called the people from PT (I was in the transitional center at the time) and they brought me a walker and wheelchair and we continued with the PT I was already doing. We all just thought it was weakness.

Sorry to be writing such a long story; I guess I am finally getting it out-(thank you).

To make a long story long-here I am 3 years later still in pain; occasionally nauseous, diabetic and going from walker to wheelchair. I thought at first the problem with my legs was become of a problem with the epidural, but now I thing it was something already inside my body and due to the trauma my body went through with the surgery set whatever that it was in motion. I can't tell where my legs are unless I am looking at them and they are very difficult to control. The part that scares me the most is that my arms keep getting major weak episodes. I can handle having problems with my legs but I don't know if I can handle it moving to my arms as well. The last few weeks I haven't[ been able to be out of the wheelchair because both knees have gone out as a result of muscle weakness letting my knee cap roam around.

Surgery positive: less nausea; pain somewhat more manageable; able to eat again.

Surgery negative: had six would surgeries due to stick abscess at original incision; unable to walk without assistance; pain up and down, sometimes back to where I can't sleep for days; diabetes

I feel being able to eat has definitely improved the quality of my life. Trust me, my weight can attest to that fact. One thing that bothered me the most is being back in the position of having all the pain etc. without having a name or good explanation for it. I mean I understand that most of it is related to the Chronic Pancreatitis, but I can't call it that anymore, nor can I explain it to anyone. I just hate being back in the position I was before I had a name for the Chronic Pancreatitis. I think you can probably understand that also. Somehow having a concrete name and reason for something helps in giving you something to focus and fight against.

As I said before, and I think it is very important. I do not whatsoever regret having the surgery. Dr. Sutherland was the first and only doctor that gave me any kind of hope. I don't see how I can ever regret taking the only chance I had at health. Unfortunately, it didn't turn out as well for me as it did for other people. In fact, I think I am an exception. I guess I was just so sick when I had the surgery that my body just couldn't handle it. I would still recommend the surgery and am grateful to Dr. Sutherland because as I said before-just being able to eat has made my quality of life so much better.

I stopped conversing with the group mostly due to depression; I basically withdrew from practically everyone. Now I am just trying to make it day by day-fighting with the pain and nausea and praying that one day I will walk again. I also wouldn't mind you sharing this with the others. I still get the digests and scan them every once in a while. Whew, I think it helped me to get it all out.

Thank you and God bless,

Kristin Duncan

Karid's Story

Hi All, I need a great deal of advice. I have a 10 year old boy. I call him Pup. He has been sick most of his life with one thing or another. He has been given every DX from Cyclic Vomiting Syndrome to just frankly I don't know! I'm now doing research on my own trying to fit the pieces of the puzzle together. Currently his DX's are Cyclic Vomiting, Chronic Eosinophlic Gastritis, Ulcers and erosion, reflux. Oh and the biggie, Abdominal Migraine. But every time he is admitted to the hospital there is always something funny. Like his liver enzymes are elevated or he has a high bilirubin. Now, this time his blood sugar was elevated. (staying around 186)

Now the explanation that we got for that, was that he was receiving high doses of steroids, to control the eosinophileds. And it happened the last time that we were admitted for stomach pane and vomiting. Which we were not informed about!!! And in any case He did not get put on the Prednisone until after that admit when we could get him to his GI doc that is 4 hr. away. Sooooooo I did some looking through copies of medical records that we had taken to his GI doc and found on several ER trips that his sugar had been slightly elevated a few times. I went to the library and researched this on the puter and this is what I came up with. Do You all think that I'm close? I take him back to GI doc tomorrow! I will not leave without a REAL DX. He's just a kid and always having this trouble. It's screwing up his poor little life. I'm just a desperate Mom.

Karid2468 

I have always had digestive problems, even as a child. When I was 7 years old, the doctors diagnosed me with a nervous stomach because I would always get stomach pains and vomit. This continued until I was approximately 23 years old. I had just recently gotten divorced and my stomach really started to bother me, i.e., vomiting, pain, diarrhea. I was referred to a gastroenterologist who performed numerous diagnostic tests. During the next five years I had been diagnosed with bleeding ulcers, irritable bowel syndrome, hiatal hernia, ulcerative colitis and diverticulitis.

In November of 1996, my appendix ruptured, and the doctors had to perform an emergency appendectomy. In January of 1997, I started to experience pain under my right rib and towards the middle, which radiated through to the back. It was pain that I had never been accustomed to before. Thankfully at that time, my husband was remodeling a gastroenterologist's house and told him about all the problems that I had over the years. I went to see Dr. Liebowitz, who performed all the necessary GI tests, i.e., endoscopy, colonoscopy, etc. Since the pain I was experiencing was not normal to me, he had a suspicion that I might have Pancreatitis. He then sent me to a specialist in New York City, (Dr. Jerome Siegel) who performed an ERCP and diagnosed me with spinchter of Oddi dysfunction, and performed a Sphincterotomy. I felt all right for the next couple of months, but in May of the same year, the pain came back. I went back to Dr. Liebowitz who then sent me to see a surgeon. The surgeon performed a HIDA scan thinking I had gallbladder disease, but the test showed nothing abnormal. Because of my surgeon's excellent instincts (he now is practicing at the Mayo Clinic), he removed my gallbladder laposcoproly (sp?). As it turned out, my gallbladder was totally diseased, full of stones and sludge. This surgery still did not take away any of the pain I was experiencing, so the doctors felt it was physiological. I was then sent to see a psychiatrist, who said that he found no mental illness, and that this surely was a medical problem.

I went back to see the gastroenterologist in August of 1997, who again, performed another ERCP and diagnosed me with pancreas divisim. He tried to place a stent in the major papilla, but was unsuccessful. He also felt that I had stones and sludge building up in my common bile duct, so he referred me to a surgeon at Memorial-Sloan Kettering Cancer Center in New York City. I underwent an MRCP, and they did find stones in my common bile duct, so the surgeon performed a hepaticojejunotomy (which basically means he reconstructed my main bile duct and redirected it). The surgeon swore this would help my pain, but to his surprise I was still experiencing the same pain. Again, I was told it was "all in my head" and sent to see another psychiatrist, who, again, told me there was nothing wrong with me mentally except for some depression for being sick, and felt it was a medical issue.

I was then sent back to see Dr. Siegel, who performed the third ERCP, but this time he was able to maneuver the guidewire to place a stent in the minor papilla. The stent was removed after two weeks, and I still had the pain. I was then diagnosed with chronic Pancreatitis and the head of my pancreas was hardened. Needless to say, I have had four additional ERCP's performed since then. Dr. Siegel states that my main pancreatic duct is so twisted that the bile backs up and causes the Pancreatitis. After each ERCP, I would be pain free for at least a couple of months. Thankfully, during the year 2000, I was totally pain free and felt that I finally had gotten rid of this horrid disease.

I had finally gotten a job that I loved, but unfortunately, in February of 2001, I had another "acute attack," and was forced to leave my job. Because my new insurance company did not cover Dr. Siege's charges anymore, I was sent to see a Dr. Mark Sterling at the University of Medicine and Dentistry of NJ in Newark, NJ. Dr. Sterling performed another ERCP, but only injected dye through the pancreas. He stated because of all the prior surgeries that I had had, he wasn't going to even attempt to maneuver a guidewire through any of the ducts. I am now being sent to the Cleveland Clinic in Ohio to see the "pancreatic specialist" Dr. Darwin Conwell. He is going to do a secretin pancreatic functioning test, amongst other diagnostic tests to finally determine whether or not I have chronic Pancreatitis. I now take Creon (pancreatic enzymes), Xanax for anxiety, Oxycontin for pain with Vicoden for breakthrough pain, Compazine for nausea, and Lopid for high trigylcerides.Ê My lipase and amylase do not always elevate anymore because my pancreas is so burned out. I have lost at least 30 pounds, am on a low fat diet, I am constantly nauseous, my marriage has suffered because my husband has become my caretaker and the sole provider. I have no quality of life, I can't work, I have no social life and cannot make plans in advance because I never know when I will be sick, and am in the process of applying for social security benefits for the second time, being denied the first time.

This is my story in a condensed form. I hope it will help others to feel that they are not alone.

Karen Schiefer
Wayne, New Jersey
kittibabies@aol.com

In May of 1999, I came home from work cuz I was vomiting and flu like symptoms and then day 2 I had pain I couldn't stand I went into ER and was told I was dehydrated and given an IV and sent home with some pills for the stomach stuff. Now in the past years I was told that I had IBS...well I came home and 2 days later I am so bad I can't stand it I couldn't eat sleep or sit or lay. I go back to ER and they then do some blood work and find that my counts were up, but not too bad but I should contact my doctor about it because it isn't normal... well I have a brother with Pancreatitis so that word alone sacred me, I went to my family doctor and he sent me for more blood work, I came home yet again just wanting this pain gone, well the next morning at 6 am I have a call from the doctor that he wants me into the hospital, which was fine with me since I hadn't sleep all night but my counts just in a day were in the 2000 and 3000 now did they make a mistake in ER or did they jump that fast I don't know, I was admitted to the hospital and no food or drink IV and IV pain meds, this was for a week and the counts started to come down so they gave me some clear liquids and the next morning the counts had gone back up.. now by this point I had had a scope and CT scan x-rays lots of blood work ultra sound, all saying yes I had Pancreatitis and it wasn't acute it was chronic.. ( which I was wondering where I missed just being acute) well they took my food away again and the counts still wouldn't come down so then they put a Central line in and started TPN now this is into the 3 week of being there and another CT scan and another ultra sound and x-rays, well the counts wouldn't come down so they made me appointment with U of M.

I went down there and talked to the Doctor and she put me in for an ERCP which she then went in and put a 5 day stent in after 5 days that came out and I still didn't get any better I got a blood infection from PIC line which U of M had taken the central line out and put the PIC line in .. so that PIC line came out and I had to have another Central line put in, which a resident tried to put in and almost killed me .. well it felt like it . I didn't want the thing back in but this was at this point month 4 and I still was unable to eat and needed it so I had another central line put in..and went back to U of M and she did another ERCP and put in a 8 week stent in, now when I had that in I for the first time was pain free and in week 6 my counts came down to almost normal, 2 weeks later the stent came out and a few days later my pain is back again, and then the next week I have another attack and end up back in the hospital, and in here somewhere they did a hida scan and find that my gallbladder isn't working at all So after 3 trys I get my gallbladder out...and thenÊ they send me back to U of M because a week after the gallbladder is out I have another attack and DR Elta goes in again for an ERCP and looks around and doesn't put a stent in, she tells me that I have small ducts and it is harder for them to work, so we try Sandostantin shots and see if they help I did those for 3 mo. and nothing didn't help the pain or take my inflammation away, I have another attack and end up in the hospital again they after a week send me to U of M for another ERCP, but I get a doctor that I had never had before and he accuses me of drinking in the hospital and doing this to myself so I end up checking out of the hospital and come home, and then make an appointment to see DR Elta which was 2 weeks later she says I need to have another stent in .. so I go for the stent and she does another ERCP but only this time she is unable to put a stent in because my duct is totally blocked and I need the Whipple surgery, now we are over a year of all of this and I am doing research on the Whipple surgery and it takes me a month or so and seeing a few surgeons but I have the Whipple surgery, it went well and I am pain free at this point I am 3 months without pain and besides getting my stomach to work right.. and a little nausea I am doing great and living my life again working and enjoy life.. and still praying that this never comes back..

Thanks to the Pancreatitis group I have made it this far. I would be lost with out all of them and the information they have given me..

Anna in Michigan 

I was stationed in the Philippines and did my share of drinking. I don't think I drank to excess but I did party pretty hard on the weekends. In 1986 I was having some stomach pain and went to sick call. They said I had gastritis.....I spent a week in the hospital and on my last morning a nurse came in to take some blood......Who knows what time it was. I kind of woke up and ask her what she was doing. She said the doctor had asked for some test. So I told her that I was leaving in a few hours and she said she would have to see. I was pretty tired and didn't think much of it until she finished and told me "Well Mr. Johnson you have a good day" I said. Hey I am not Mr. Johnson. My last name is Armstrong......She got all flustered and the guy in the bed next to me said that his name is Johnson...Well that is how it goes in hospitals sometimes......lol....Anyway.....I didn't have anymore pain and later I would realize that the pain I was having was from my pancreas...The pain was no where near as bad as it was going to become. I wish they would have diagnosed me then with panc. Maybe they could have prevented the problems I have know. Hindsight...Isn't it wonderful......what you could have done differently. lol...

So in Dec on 1987 I went to work on the Flighline as usual. I was having some pretty good pain, but you tend to rationalize things. I told myself it was just bad heartburn. I ate tons of Tums. I got off work and was pretty tired. I went home after work which was about 11 pm. I worked swing shift. Anyway I woke up the next morning, dying of pain. It was the worst pain that I could ever imagine. I crawled out of bed and got myself dressed and walked to a friends house...We both lived off base and I told him that I needed to go the hospital.....He jumped up and we went to the ER. I told the ER doc what was going on and he layed me down and examined me. He said he thought that I had Pancreatitis. Up till then I didn't even know what a pancreas was let alone what it did. He asked me to drink this liquid which I did and about 5 mins later I told them that I needed to get sick. They kept telling me to go ahead. I didn't want to get sick on the floor but they kept telling me to just get sick.....I proceeded to throw up all over the place.....After I finished getting sick, the doc tried to put an NG tube down my nose and into my stomach. Every time he would get so far, I would start to Retch and I would yank the tube back up. This guy tried about 10 times or so and I wouldn't let him. It was the worst feeling. They then decided to give me some pain meds. I was hurting so damn bad......I remember asking the Nurse how long the pain meds were going to take and he said about 1/2 and hour. He told me later when I spoke to him that he told me that so I wouldn't be waiting for the drugs to hit me.....I began to fade and was told later that they tried repeatedly to put this NG tube in but I wouldn't allow it. I was throwing people all over the place to get this tube back out of me. I do not recall any of that, but I am a big guy. 6 feet 4 and 200 pounds then.

The next thing I remember is waking up in a room. I remember them telling me that I couldn't drink anything. I was so thirsty.....I got up out of bed and walked to the drinking fountain and rinsed my mouth repeatedly......I then stumbled back to bed...The next thing I know...I wake up in ICU with tubes coming out of me all over. I would fade in and out and remember them pumping into me some anti acid stuff into one of my tubes.. They would later become my drainage tubes.....when they would pump it in it would come immediately out thru my NG tube. I am unsure how long I was in ICU and really had no idea what they had done to me.

They then moved me to the 5th floor of the hospital and the doc would come in and every day back out the drainage tubes about 1/4 of an inch so that it would heal behind itself...Time passed...They got out the drainage tubes but I was not getting any better.....I was in Limbo for about 7 months.....They then decided to operate again...I woke up with the drainage tubes in me again but this time they didn't remove them. Everyday I would drain about 1 cup out of each side and when I asked what the stuff was, the doc were evasive.

Finally in NOV 88 I forced myself out of bed and walked to the elevator and down to a phone where I could call my mom...She had no idea. She knew I was sick from the Red Cross, but she figured, no news is good news. I told her that she needed to get me out of there and that I would die if she didn't. Three days later I was in Texas. She had called our Senator and he pulled some strings. When I got to Texas, I weighed 140 pounds. I couldn't hardly move. I really thought that I was going to die. The doc's there however filled me full of confidence. They operated on my in Dec and I woke up out of the operation without drainage tubes...Three days later, I got up and walked to the door.....It was hard but I felt so much better and was getting stronger everyday. At the time I still didn't know all that they had done to me. It wasn't until I looked at my Medical records that I found out that I had pysuedo cyst the size of a 2 liter bottle that they removed on the three surgeries.

After another couple of weeks they sent me home to Oregon for 2 months. I became stronger and stronger. When I went back to Texas they asked me if I wanted to stay in the military. I told them I did and they sent me back to the Philippines. I would still get pain but nothing like I felt before..I stayed in the Philippines for another year and 1/2 until I got orders to Grand Forks, North Dakota.

I was there about 6 months when I started having symptoms of Diabetes. Of course I didn't know this. I would again rationalize (which now I try not to ever do). I was peeing all the time I rationalize because I was drinking lots of water because I was trying to exercise. My pancreas began to hurt again. I went to the ER and told them that I had pancreatitis in the past and they admitted me right away.....The doc asked why I was still in the military. I told him, the powers that be asked me what I wanted to do and I said I wanted to stay in. He said he didn't think that was a good idea and proceeded to Board me out of the military.

During that time I met my soon to be wife and I moved to California. My pain was worse than ever and the military didn't do anything to help me so I went to the VA. I couldn't handle the pain and went to one of the VA hospitals. I actually had a PA tell me that I didn't have pancreatitis. I asked her how she knew that. She told me that I didn't have elevated enzymes, which later after years of study I found to be normal for me since I didn't have enough pancreas left to create them. Needless to say they did nothing for me. My wife and I moved to my home town of Bend, Oregon where I continued to have problems. I applied for my VA benefits and went and tried to find a job. I ended up going to work for the United States Postal Service. I worked for them for about six months delivering mail sometimes bent over in pain. I went to the ER after many days of being in pain and the doc at the ER called the post office to inform them that I would not be coming to work......The post office let me go the next day. I was pissed but it was a blessing in disguise. I sent the letter that they sent me which basically stated that if I couldn't be there, they couldn't use me.....I had only missed that one day. Anyway. The VA made me unemployable right then. I now get a VA pension.

It still didn't fix my pancreas problem and I went thru many doctors and many hard times. I tried everything. I finally found a physical therapist that said she could help. I have been seeing her for about 6 years now and it is the only thing that I have found that really helps me. It is really amazing. About 7 to 9 months ago I found this group and have tried to be as active in it as possible. It has been a godsend. If I can ever help any or you in any way, please let me know. I have left out so many details but it would be a book by time I finished. If anyone has any questions feel free to write me. I hope this finds you and yours well

Mark E. Armstrong

Well...my story is still new and am in that 'undetermined' phase. I caught a virus around memorial day of this year. I had a pancreatitis episode around the third of June this year. I thought I was dying. I had horrible nausea, vomiting, diarrhea, weakness, kept falling down, became severely dehydrated, etc. Wound up in ER. They gave me IV fluids, tests, scans, ekgs, everything. My enzyme levels were slightly elevated, and that was the only time they were ever elevated...had 5 attacks since. Had gallbladder out in July, two attacks after that. Just had to change doctors because my doc doesnt believe anything is wrong with me. GI that I went to didn't run any tests, said he 'thinks' i've got sphincter of oddi dysfunction and recurring acute pancreatitis. Wants me to go to Mayo Clinic for a sphincterotomy and ercp. I don't have insurance, I will be able to apply for state insurance next month...yayy...we are declaring bankruptcy also.

Had another attack on Thursday...6th one. Warded off a lot of the stuff by taking some enzymes and levsinex...was very mild in comparison to others. Pain still there, but pretty manageable.

Marti 

 I was diagnosed as a diabetic at age 10. Only one in my family. Was kind of odd, but we dealt with it.  Had problems at times because my doctor couldn't seem to decide if it was type 1 or type 2 in how it reacted to things. Had my first recognized pancreatic attack at sixteen in 1986.  For four years after that, I lived as  normal a life as I thought it was a onetime deal. Went to college, got engaged and then wham.  Almost every year after that I had a case of pancreatitis.

Finally in 1993 I got with a good doctor who thought I might have a pancreatic divisum since they couldn't find a reason for me to have these all the time. I did and they recommended surgery. Meanwhile, I was struggling through college, my relationship got rocky with my fiance as he didn't think he could deal with my health problems. I was also having problems walking at that time and it turned out I had bursitis in both hips, which is controllable with exercises.The bursitis is caused by a muscle in each thigh that is connected to the bone incorrectly and periodically I require physical therapy to stop the pain from it when the exercises don't work. I had the surgery on my pancreas, I think it's a sphincteroplasty. They tried to put in a stent before this and found out my ducts were too small to even get one in and too close together, which is what they think was causing the reoccurent attacks.  So, major surgery.  What they did is basically widen both ducts and unblocked the one that had never opened at birth.  It seemed to work for about 4 to 5 years. I lost my fiance in the battle with my health.

I finished college with a double major in English Literature and Anthropology. Was looking forward to getting a Master's in Physical Anthropology. I decided to take a year's break from school and got a job at Sun Microsystems as an admin. Just as I was starting to apply for Graduate school two years later, my pancreas started acting up again. I got to finally see another specialist and he confirmed that it had gone
chronic. (after three hospitalizations in three months). Put me on enzymes and they stopped the pain.  I went on an extreme low fat diet. The doctors are now thinking I'd been fighting the pancreas all my life and that's why I was the only diabetic in the family on both sides. There is the possibility I had some attacks when I was about 4 or so.

Once I got my health under control I lost my job at Sun because I wasn't willing to move to Colorado, which is where they relocated my department,  and went through my savings looking for another job which was supposed to go towards my Masters. I got a temp job at Kaiser Foundation Health Plans in their benefits department.  Started my savings again and thought about that Master's degree. The month I applied to take the GED I had a heart attack and bypass surgery. I was 29 and was on a low fat diet. Admittedly I was overweight, but otherwise doing okay. Turned out I had a genetic blood clotting disorder and I had a
blood clot about 2 inches wide in my main coronary artery. I also have other health problems (Migraines, neuropathy in my legs from a back injury, retinopathy from diabetes).

Kaiser took me back, even though I was a temp once my disability ended. Three months later I found a permanent position in another department.  A job I really wanted. I would be an admin, but also designing websites and using my technical knowledge of other office suite programs. I loved my job. All my coworkers were nurses and very understanding about my health.. In January 2001 I had another pancreatic attack, only this time, the pain didn't go away.

I finally realized that I would have to put my dream of a Master's in Anthropology on hold.  Unlike in my twenties, I no longer feel capable of juggling a job, school AND my health.  Two out of three, yeah, but not all three. And, because I have no one else to give me insurance (no spouse), if I don't work, I don't have health insurance and I don't want to even think about how much all my medicines cost without insurance. I got a raise and moved into a new position at Kaiser as a Clinical Data Analyst and I loved that job too.  I fought hard to try and keep working, but I was always exhausted.  I also found out I had even more health
problems, that had been bothering me. I have sleep apnea, mild anemia and the bursitis  has decided to become a problem again. Then, in December 2002, it became apparent that I could not continue working. I was having problems staying awake at work, sometimes almost hitting my head on the monitor from falling asleep at the computer. I started having huge memory problems, my short term memory no longer
in existence. I'd forget instructions given to me just a few minutes earlier. I had trouble following complex
instructions, asking frequently for more  clarification.  My accuracy, a main qualification for my position, dropped to unacceptable levels. I'd have episodes where I'd be staring into space, in mid-keystroke, like I was frozen in time. I only found out about that from another coworker as I was never aware that these episodes were occuring. I'd be frozen for up to 5 minutes at a time. I could no longer perform not only my current position, but my previous one as well, and probably not any other job either, as most jobs require at
least regular attendance, something I can't do anymore.. I'd never know if I'd be able to come in to work until I woke up that morning and several times I'd had to leave work in the middle of the day because the pain got so bad that I couldn't continue to work.  I was no longer reliable for being able to come in every day. I don't know if I'll ever be able to get that Master's degree that I wanted so much. A good part of the school work is based upon memory and reliable class attendance, things I can no longer count on being able to do. I'm now in the process of applying for SSDI, since I can no longer work.

I live in my mom's house (I'm renting it from her while she works in the Bay Area in a trailer closer to work) with my three kitties, Smokey, Riffraff and Velocity. I do a bunch of crafts such as crosstitch and beadweaving to pass the time on my good days. As well as devouring tons of sci-fi/fantasy  and romance novels and collect swords and knives(bet ya didn't expect that after the crafts, huh?).

Most of my close friends don't understand about my health and I know they get tired of hearing about it so my online support groups have really given me someone I can talk to about it and not feel like I'm being politely screened out at times. I'm a fairly shy and retiring person actually when I'm with strangers and more outspoken and such when I actually get to know people.  My mother and only sibling (brother) are very supportive, but I know it's hard on them as my caregivers and so I've really needed someone who really
understands what I'm going through. Oh, and my mother's first cousin's daughter is also starting to have cases of pancreatitis. Guess the pancreatic divisum is on my mother's side of the family.

Kimber
--
Kimber Allen
Vallejo, CA
hominid2@concentric.net

I had an acute attack in April of this year. I had never heard of pancreatitis. However, I look back over the years, and I am sure I have had attacks previously. Anyway, this attack has left me an insulin dependent diabetic, dependent on enzymes for malabsorption problems and naturally dependent on pain medication. I have not had one full week without pain since the initial attack. Hence, chronic pancreatitis. I have been referred to a pain specialist and also now, a GI. I do not like the bedside manner of this GI and after much surfing the net, have located a Pancreatic Center in my area (although not on my insurance plan). I have been surfing the net and am educating myself on this dreaded, cursed, @#$ illness. Since all the doctors I have seen readily tell me that very little is known about this disease, and if you do not want the invasive procedures done, all the doctors can do is monitor the nurtitional issues, pain management and monitoring of the diabetes. My pancreatitis was brought on by high triglycerides. Mine were 5000, normal is within the 250 range. I had two procedures similar to dialysis, while hospitalized, where the fat was removed from my blood and then the blood put back into my body. I am convinced that we (everyone) must take an active part in their own healthcare. That, for me, means being aggressive with my primary care doctor in assessing my progress and with referrals to specialists. I am also going to call my insurance company on Monday to try to get a referral to this out of network Pancreas center, located in a teaching hospital here in Cincinnati. Please if anyone can help me - How can I continue to have pain, when the most recent CT scan shows normal? Could it be that the damage caused from the attack cause this? Also, I have pain in the right, center of my abdomen, since I have also been diagnosed with fatty infiltration of the liver, and there are some medical folks out there, is this the location of the liver and can that cause pain, or is this simply part of the pain of this disease? Any and all replies are appreciated. I wish each and every one a pain free day today...

Thanks.... Paula 

I have been ill for many yrs. now--I was dx'd with S.L.E. (lupus) and Fibromylagia when I was 40ish. I also had G.I. troubles right off the bat, had many tests--conclusion I.B.S.-- I would continue to tell my specialists, over and over, No, something else is wrong. I would point to my liver area, the pain can be awful at times, so blood work ups, colonoscopies, endosopy's were done- nothing showed up---UNTIL-- last Sept. I woke from a solid sleep, vomiting green, and out the other end too. Went to E.R., after tests they found my pancreas was acute---now came the questions, how long have you been drinking--I never had drank in my life!! But that was not an easy one to get the doctors to believe! There is such a thing called lupus pancreatitis--dah--so finally the attitude was better.

I am kinda used to people not understanding my illnesses, as with the lupus, people just do not seem to get it, now the chronic Pancreatitis -- the added problems with this condition--the same reactions too. People just want to see me get well, is it more for them or for me, at times I really wonder!

Last Sept. my hubbies employer shut their doors, no insurance to top this all off -- unemployment to much to get help! Hubby has a job now, waiting for insurance time to kick in--so here I sit, praying that I do not become acute again--oh, while hospitalized I also had a heart attack-go figure--had a stent implant done for that. This is a bit of my story--hope to get to know a few of you -- hopeful then I may not feel so alone!

Thanks for listening--Peace&Love,

Paula
feather_fairy_now@yahoo.com

Shana's Story

My name is Shana. I'm 22 and live in Halifax, Nova Scotia, Canada. My story is kinda long and complicated. I had abdominal pain and chronic vomiting that started in July 1997. For a long time my doctors told me it was psychological until February 1998, when I wound up in the ER and they checked my amylase and lipase. My amylase was up in the 300's and my lipase was over 5000. My transaminases were also elevated. An ERCP was done in April that showed stones and sludge in my ducts. They were removed, but my symptoms didn't improve and in June they removed my gallbladder, but it didn't help for long. I was in and out of hospital that whole year. Another ERCP showed I had formed a stone even though my gallbladder was gone, and they removed that and performed a sphincterotomy. It didn't help. Then in Febuary/March of 1999 I was admitted for 6 weeks because of malnutrition (from daily vomiting), a weight loss of 70 pounds in 5 months, and because my amylase and lipase wouldn't go down. Another ERCP showed that my ducts were only partially open. I was diagnosed with chronic pancreatitis by a GI and surgeon but my PCP still maintained the pain and vomiting were psychological, and would not treat it or send me to a pain clinic. I switched doctors, and received a bit better treatment, being put on enzymes and occasionally giving me a prescription for dilaudid when things got bad.

In March of 2000, I moved here to Halifax, which is a bigger city, where I finally got in to see a good GI and got into a pain clinic. My CT scans haven't shown any significant abnormalities, but the ERCP's and MRI's have all showed stones and narrowing of the duct. Some doctors here still say I can't have chronic pancreatitis if my CT is normal, but the specialists have told me that the ERCP is the most sensitive test and will pick up abnormalities the CT SCAN can miss.

I've had at least 7 bouts of acute pancreatitis where my enzymes and everything went sky high, but it seems now when I get the attacks my enzymes no longer go up. I've read that happens after awhile with chronic pancreatitis, although not many doctors seem to know this! My doctors have told me that in addition to the damage to the pancreatic tissue, I also have damage to the nerves around the pancreas, which is what causes a good deal of the pain as well.

I've done rounds with all the well known pain meds...ms contin, oxycontin, hydromorph contin...however, my body seems to become tolerant to these meds fairly quick. This year I strted on methadone, which has worked really well, and I don't seem to be getting tolerant to it at all. I take 20mgs every 6 hours. I take oxyIR for breakthrough pain, and Zoloft for depression.

The methadone keeps the pain under control for the most part, but so often I get a flare up that I can't control at home, and have to go to the ER. They used to give me IV fentanyl, however, one doctor has since labelled me a *drug seeker* so now I am usually turned away without anything, despite my known diagnosis of chronic pancreatitis. They say because my enzymes don't go up then I can't be having an acute attack. I've given up arguing. Despite all this I know I am very fortunate to be receiving adequate medications for my pain, especially where I am young. It seems to me that most young people who have chronic pain don't get the medications they need, simply because of doctors' predjudices about young people being addicts.

I haven't had any sort of surgery, and am glad that it hasn't come to that yet. Although my past few lab tests have shown my sugars are steadily creeping up, I haven't yet developed diabetes. I do have probelms with malabsorbtion though. So compared to a lot of the people here, I've been pretty lucky...if anyone with pancreatitis can be said to be lucky in any way!

Well, that is the story of my disease. Hopefully now that my life has settled down, I will be able to become more active with the list again. This past year has been one wild ride...but I made it. Anyhow, I guess that's it for now.

Take care....Shana (aka Shay) 

I had twins in 90, had belly problems, had hyster. when they were 3 months, appendix on their 1st b-day, had gallbladder at 1 1/2 years, alot of pain & suffering. Had an ERCP here at home, showed everything ok. Was finally sent to Ohio State in Feb. 93, had an ERCP done & because of the ERCP had very bad acute pancreatitis. Developed pseudocyst, had to be give 2 units of blood, was on TPN, didn't leave the hospital for 6 WEEKS. Was in & out of hospital at least once a month at Ohio State for next 2 years. Was having nerve blocks done, didn't help much, the doc here in Spfld who was doing the blocks did his schooling at IU & he called Dr. Lehman on a Wed. & I had an appt. that same Fri. Dr. Lehman ended up doing another ERCP in Oct/95, cut both ducts, left in stents, passed stents on my own. Had flair-ups every so often, was only hospitalized twice from Oct/95 until Dec/99. Saw Dr. Lehman in Jan/2000, did a 3rd ERCP, cut the ducts as far as could be, have been sick since. Been in hospital Dec/99, Jan, Feb, March, April, May, Dec/2000. During that time been on TPN twice, developed 2 blood infections/pneumonia/a pouch of fluid outside my lung they had to drain with a chest tube & was in the hospital 3 weeks. This year I've been in the hospital Jan/March and was "shipped" to IU by Med-Trans in March, and was started on MS Contin & MR IR. Dr Lehman threatened to have a feeding tube placed in my belly, but so far I've avoided that. I've had some personal problems that seems to have taken my mind "off" of my medical problems, but I'm hangin' tight. So, there it is. Kinda short, kinda "mini" series of it all. Thanks for your interest.

Linda

When I was about ten and 1/2 I had gotten a really, really bad cough right after Christmas. On Jan 2, 2000 I started having really bad stomach pains. On Jan. 3rd I stopped eating and drinking. That Tuesday I was supposed to go to school (back from Christmas vacation) but my Mom took me to the doctor's office instead. They told my Mom and me to go to the hospital for a cat scan.

At the hospital they took blood and then did the cat scan. The doctor said that there was too much puss to tell for sure what was wrong but he thought it was appendicitis. Then he told us that he was going to have to do surgery. Well, they took me upstairs and started me on an IV. There were 2 nurses trying to get an IV started in my left arm and a doctor from anesthesia trying to get one started on my right arm. They finally got one started and then they took me down to surgery. The doctor took out my appendix but nothing was wrong with it so he "opened me up" some more and did exploratory surgery. That's when my surgeon thought that it was Pancreatitis but he thought that I was way too young to have something like that. A couple hours later the blood work came back and my white cells were elevated then he knew for sure that I had Pancreatitis.

My stay at the hospital lasted about a month. I stayed at a grown up hospital. There weren't any toys or any fun games but a lot of my family and friends came to visit. The nurses made me walk around at least once a day but my Mom would help me out of bed. But then the nurses started getting mad at my Mom and told her that I needed to get myself out of bed. So I did pull myself out of bed but when doing that I had to bend my IV arm so I ended up blowing that vein and they had to start another one. I ended up getting pneumonia. A little while after I got better from pneumonia they let me go home.

I still remember walking out in the purple (my favorite color) robe my aunt got me feeling so happy I finally get to go home...I still remember thinking that this was probably just a one-time thing and that I could never have to come back to the hospital gain...How so wrong I was, how so very wrong I was....

Over the summer I started to eat regularly again...(Fatty foods)...My birthday was in the summer so I had pizza and cake. And basically all summer I ate really fatty foods. Well, in Sept, I had another attack. I went back to the same hospital but they decided I needed a specialist for kids, across town. They gave me two Lortabs and told me to wait for the ambulance to get there. Me and my Mom decided to explore the hospital one last time. Well, as you know taking Lortabs can make you kinda weird. We saw a good looking doctor and me feeling soooo happy...I said "Hey, Honey." My Mom burst out laughing. I kept running from my Mom and trying to hide (with an IV in), talking to some older women in the gift shop, and finally we went outside and I nearly fell off the curb. My Mom said I was high and silly so I needed to go back to my room. I rode on the ambulance, went to the children's hospital, and got my pediatric GI.

After Thanksgiving I went to Charleston. I had a MRCP and an ERCP done. I really love that hospital; they have an awesome giant room for kids to play in. And decorated all Christmassy. The ERCP caused me to have the worst attack yet. In March 2001 I had another attack and was put in the hospital. Since then I have been through a lot of tests, CTS, MRCP's, Endoscopes down my stomach, Hepatbiliary scan on my gallbladder, lots of x-rays, ultrasounds, and way way way way tooooo many blood tests. I have had several flare ups and have been in pain since May 2001 pretty much every day and missing school the whole month of May. Now I am on Sandostatin injections, they have not started working yet but we are giving it another week. I have missed the last 3 or 4 weeks of school.

My docs next choice after this is to send me back to Charleston. Hopefully in Charleston, they will find something they can fix. Well, thanx for reading my BIO. Please feel free to send me any questions or comments, my Mom said she would give them to me.

Your Panc Pal,
Jackie

(Update January 2002)
Well, the Sandostatin did not work. She had an ERCP in Charleston in October 2001, Dr. Peter Cotton did a Sphincterotomy, which did not help. She seems worse since that but he said her duct was closed. We are going to a pain management doc next week at the MUSC in Charleston. Jackie just started back to school but this morn she went and came right back home. She was hurting too badly. She has missed about 4 months of school this year and she is trying to go back. Jackie is 12 and they say her Pancreatitis is chronic and idiopathic. When she was talking about how she was diagnosed she said her white cells were elevated; that was true at some point but at the point of the diagnosis the amylase and lipase were elevated. Was considered chronic about the second flare up, I believe.

Teresa, Jackie's Mom. 

Liane S. I'm 36 years old and have had Pancreatitis since 1995/6. My first symptoms were abdominal pain, diarrhea and loss of weight. My amylase was 166, one year after 144. In 1999 I had to have stomach surgery, my amylase was 80, normal. By now I started to feel so much nausea and weakness, my amylase elevated again 147, and I developed iron deficiency anemia. I'm using iron IV for it. I'm on a low fat diet, and I never consumed alcohol. My Ultrasound also was normal. I think that you must have to take care all your life, as we are prone to have flare ups. Apart from amylase, I also have done a fecal fat test, xylose (sugar absorption), upper GI Endoscopy (I also have esophagitis/recurring hiatal hernia) and Sweat test (that came back positive for cystic fibrosis, a genetic disease that affects the pancreas).

I hope my experience may help you.

All the best,
Liane from Brazil 

This is Scott, the sub guy. I had no idea there were so many people like me. I also had no idea there was so much information out there in cyberspace about this horrible "condition." I would like to take this opportunity to tell my story.

I am a 33 year-old US submarine sailor. I proudly served as a submarine mechanic on the USS Maryland (SSBN-738), Blue Crew for 5 years from 1992 to 1997. I was then transferred to shore duty in CT, where I still serve. I am an integral part of the Quality Assurance division at the Naval Submarine Support Facility, New London. I am a Quality Assurance Supervisor to a team of Quality Assurance Inspectors. As a technical trainer, I provide training to incoming Navy and General Dynamics/Electric Boat Division supervising personnel. Responsibilities also include inservice education for most of the staff. I teach the Oxygen Cleanliness Certification course as well as a variety of topics. I have served here over 4 years, and I will be here until September (unless the Navy decides to medically separate me before then). I was supposed to go to the USS City of Corpus Christi (SSN-705) in January 2001. That did not happen...CP (Chronic Pancreatitis) did.

It all started with a major attack in November 2000. I went to bed at about 11:00 pm and everything was fine. At 2:00 am I woke up drenched in sweat and in the worst abdominal pain I could imagine. I had no idea what was happening to me. I thought it would eventually go away, so I toughed it out until about 7:00 am that morning. When I could not stop vomiting, I began to really get concerned and was worried about dehydration. I went to the Navy Medical Clinic and was sent to a local hospital. I was diagnosed quickly. My Amylase & Lipase levels were quite elevated. They jacked me up on Morphine and Demerol, stuck a (NG) tube up my nose, and hooked me up to IV fluids for a week. After that, I was discharged.

They "evaluated" me for several months. I still had bad pain; 3000 mg/day of Vicodin helped with that. After the evaluation period, they did a follow-up CT scan. By this time, I had developed two pseudocysts. In June, I had my first surgery. They drained the cysts and removed my gall bladder. This was not part of the original plan, but it (the gallbladder) looked "discolored and generally unhealthy." I was discharged after about 8 days still on a clear liquid diet, with instructions to wean myself slowly back to a regular, albeit low-fat, diet. This plan didn't work out so well. Three days later, I was back in the hospital unable to tolerate any solid food. I was re-hydrated and able to eat solid food in about a week and subsequently discharged. Oh, yeah, during the initial surgery part of my pancreas was also removed.

A few days later I was alone at home recovering when I began to feel weird. I started sweating and feeling somewhat light-headed. I vomited and there was blood in it. Immediately upon finishing getting sick, I had an uncontrollable urge to "go #2," if you know what I mean. Well, I'll leave out all the gory details...suffice it to say that there was a tremendous amount of dark red blood in that, too. So now, I have blood coming out both ends steadily. I got up to call 911. As soon as my hand touched the phone, I passed clean out. When I regained consciousness, I called my fiancee and an ambulance.

They rushed me to the local hospital here in Westerly (Rhode Island). They knew I was bleeding from an artery, but they were unable to determine which one. They wanted to life-flight me to Providence but it was storming badly. I ended up going to Rhode Island Hospital by ambulance. This is a Brown University teaching hospital. After two angiograms, my splenic artery was finally embolized with two coils. They lost me twice on the operating table in the process. My spleeny artery let go two weeks after surgery. It ruptured very near the original surgical site. I was bleeding into my stomach and through the pseudocysts into my intestines. That was the worst night of my life. I kept waking up during the angiograms. I think the poor anesthesiologist was afraid to give me too much because of the blood loss. I had over two times my body's capacity transfused that night.

A few days after being discharged from that episode, I went back to the hospital with a fever of 102.5 and tremendous back pain. It turns out that I had a large abscess and my spleen had become infected and so enlarged it was pushing on my insides causing me back pain. So, I had an emergency splenectomy. What they can normally do laparoscopically took a 7" incision. This was all in the summer of 2001. What a crappy summer!

Since then, I have been hospitalized three times. Once for an ERCP, and twice for pain episodes. I just got out of the hospital two days ago. What was diagnosed as Acute Pancreatitis became Chronic Pancreatitis this last time.

I found you guys and gals the day I was released this last time. I am still on Navy medical hold. They're probably going to medically discharge me since I can't go to sea anymore. No Navy ship (and certainly no submarine) is equipped to handle CP. I don't have constant pain, but I'm very scared of everything I put into my stomach. I am on Pancrease, Prilosec (for GERD), and Percocet for pain. This is going to sound funny, but everything else in my life is fantastic.

Well, that's my story. If anybody wants to, you can e-mail me. I check my e-mail almost every day. Don't get mad if I do not respond immediately, but I promise I will respond happily to anyone who writes me.

Scotty 

Well, it started almost a year ago when I has having digestive problems. I was very ill for a few days with nausea and cramps and we thought I had the flu which was going around. A month later in April it started again. I was ill for two days with vomiting and diarrhea and a pain underneath my sternum and abdominal cramps. I had been slowly losing weight but have always been on the slender side. I woke up the next morning with severe, excrutiating abdominal pains and a large rock-hard mass in my left abdomen. At the hospital a few hours later they did an ultrasound, then a cat-scan, and told me that I had an acute pancreatitis attack and there were multiple pseudocysts in the head and tail of my pancreas. The largest was 5.8 cm. and one of the others was 3.6 cm. My amylase and lipase levels at that time were highly elevated. I was referred to a gastroenterologist at the hospital after a second ultrasound determined that there were no complications with my gallbladder, it is "remarkably" small, but fine.

Two days later they did a 2nd c-scan and a fine needle aspiration to partially drain and biopsy the largest cyst. By then my diagnosis was changed from acute to chronic, with reaccuring acute. They believe alcohol was the cause because I used to drink. My GI put me on a strict low-fat diet and then on enzyme supplements a month later when my a & l levels were lower. My amylase remains slightly elevated; they say that is due to the pseudocysts which are still present. The largest had reduced to 3.6 after the drainage, but they have not shown any significant further reduction in the quarterly ct-scans that I have had to have done to monitor their progress since July '01.

I currently take Percocet 7.5 when I have a flare, which is used by most as a "break through" med, but am fortunate in that I do not need daily pain medication as many of our other members do. I also think the antioxidants do a lot to keep those pain gnats at bay. Getting a good GI or pain management doctor who can prescribe a suitable pain medication for you needs to be a #1 priority. Adequate pain relief is so important. Every flareup and inflammation of the pancreas causes damage. I would like to say that this won't progress any further, but I don't think that would be truthful or realistic. So I do all I can to follow the diet, take my antioxidants and always keep well hydrated by drinking large quantities of water, juice or iced tea all day long. I have to have my morning coffee, but seldom drink anything carbonated.

Guess that's enough of a story for now.

With hope and prayers,
Heidi in SC

December   17, 2002 Update
I went to pick up a new prescription for my Percocet 10's today at my doctor's office. For once, the nurse's usual mistake of not reading the most recentprescription dosage, and writing it for the correct dosage worked to my advantage, because I got to see my doctor for an unscheduled appointment.  Nearly every time I have gone to pick up my prescription in the past, the nurse has failed to check the newest changes and written it for the old dosage, which has meant that I have to wait around the office for a break between patients for the doctor to sign a revised script for the increased dosage amount.

My doctor asked me to come back to the examining room so we could talk. I told him about my increased pain during the last few months and that I had been having severe pains in a new location. Since I already have multiple pseudocysts, I was concerned that perhaps a new one had formed. This new pain location is in the upper right quadrant of my abdomen, just below and behind the ribs, and has lately been frightening in its intensity. He asked me to lay on the table and did some prodding around and I nearly jumped sky high at one point.  He asked me if I had ever had any earlier troubles with my gallbladder, since I have been one of the few people with CP that has a healthy, though "abnormally small" gallbladder. I guess the   word "has" may be short-lived in my case.  He seemed concerned about either my gallbladder, or a problem with the pancreas head, and ordered another CT-scan as soon as it can be scheduled through the hospital, instead of waiting for my six-month scan.

I am scared now that the gallbladder has suffered due to all my problems with the pseudocysts and chronic pancreatitis. I guess I will know more after this CT-scan, which I hope to have this week. It was interesting to note where Lola said she felt better during her attacks without a gallbladder, than with one. I really do not want to have mine taken out, but of course, if there is a problem there, too, I will have to have it done.

December 28, 2002
My doctor called yesterday with the results of my most recent CT-scan. He had suggested another CT-scan after my telling him about the increased pain I'd been having, which was also more pronounced and located more in the right side of my abdomen. There was concern either that a new pseudocyst had developed or that there were problems with my gallbladder.

The good news is that the scan showed no new pseudocysts, in fact the ones I already have even showed further reduction since my June scan. My gallbladder looked fine, clear and showed no problems. He said from now on he does not even see the need for these expensive CT-sca ns ($4,800 each time, and this was my seventh in less than 1 1/2 years!). He said that from now on all they would do to check the pseudocysts are an ultrasound.

However, he has recommended that I have an upper endoscopy (EGD) just to check all possible avenues, and wants to do a colonoscopy the same day. He has been suggesting the colonoscopy for several months now, due to my age (51).  It is considered a sensible diagnostic procedure for anyone over 50, and I had just been stalling. Therefore, I have agreed to make an appointment within the month to have the procedures done. He said he believes the pain is just from the progression of my CP and that what I have been experiencing is referred pain from the pseudocysts and damaged pancreas. It is good news that nothing except improvement was found, though I am discouraged that good news does not necessarily mean less pain. Oh well, that is how the cookie crumbles!

February 2, 2003 Update
The colonoscopy and EGD (Upper Endoscopy) scheduled for today are over and I am sighing in relief, the doc says he will not need to do it again until 10 years from now.

The Endoscopy IV nurse called me yesterday, (clear liquids only day) to introduce herself and give me some tips on how to handle the gallon of NuLYTLEY I had to drink last night. She said that if I took a sip of Coke, and swizzled it around in my mouth and swallowed it after each 8 ounce dose of the prep that I had to drink every 10 minutes, that it should go down easier, and probably without nausea or making me feel sick. It worked, and I managed to tolerate
it all within two hours. My 6'3" son, who had a colonoscopy 6 months ago, was impressed; he said he could not even drink 60% of his!

The same IV nurse greeted me at the door of the outpatient surgery unit today. She was supposed to be the hospital's IV specialist, which I had requested because of being a hard stick with tight veins. She was mystified after her first attempt failed...and my husband asked me if I wanted to hold his hand.   I said I would wait until the second attempt failed, and then he could take my hand and pull me out the door! Fortunately, her second stick took, and as she was apologizing, I explained that this had been a problem with me since youth, and no one usually ever believed me until the sixth or seventh try. She sat there with her eyes rolled back and shook her head in dismay.

They took me into the endoscopy room, two nurses hooked up all the apparatus for my vital sign monitors, my blood pressure was 124/70. Then my doc came in making recommendations on where I could get a great dinner after the
procedure, since it was already 4:15 and I had been without food for 44 hours. The anesthesiologist was telling me about a "mule " festival and I thought I was already losing it on the drugs.....WOW!.....until he explained that he was from Belgium and in Belgium the word sounding like "mule" means mussels.....and he was talking about an annual seafood festival . So maybe the doctors talked about food all through the procedure, because the mule festival was the last thing I remembered until the nurse was waking me up,telling me it was time for tea and toast.

The doctor showed my husband and me the pictures of both scopes and fully explained them all. They found a tiny Hiatal hernia at the end of my esophagus, two tiny polyps in the colon and evidence of unsubstantial diverticulosis. The hernia, he said, was too small to be concerned with and would probably never bother me or need attention. He removed the two polyps and sent them to pathology. He felt they would be of no concern, but said that pathology would have the last word. More water consumption and more higher fiber could easily correct the diverticulosis he said. It seems even the 68 ounces of Poncho cocktails I drink daily is not enough, so I will reiterate...drink plenty of water! I will also need to make a daily effort to include more rabbit food in my diet. Overall, the doctor said that everything looked good...the way it should, and that I should go home happy.

I forgot to ask how long pathology takes, a few days I suppose. I was still a bit wobbly when they wheeled me out to the car and the gassy feeling tonight is hardly a mentionable disturbance. So now that I have probably told you all more than you wanted to know about my grand adventure in Endoscopyland, I will say good night...

I left out a frustrating story from my endoscopy visit yesterday. Just goes to show how little general medical people actually know about chronic pancreatitis.  I did not mention that my procedure was delayed by the fact that my GI had to do unplanned surgery in the morning. The scopes were scheduled for 3:00, and my husband and I were waiting in my little private room until 4:15 before the nurse came to stick me and go over my records The IV nurse, Byna, was going over my records and had 115 written in for my weight. This was the record from my CT-guided fine needle aspiration drainage and biopsy done in the same facility in April of 2001. I corrected her and said that my weight was down to 112, unfortunately. She said, girl, you do not need to diet; you are already just too skinny!  I  told her I had chronic pancreatitis and malabsorption and this was the result. In the section where it asked about alcohol, it was already checked NO. She checked YES in that section, my husband rose from his chair to protest, and I jumped on her and told her, NO, I do not drink alcohol. So now both answers are checked, yes and no, and now I wonder if I should have make a stink and have the whole record stricken and start over?

In the Endoscopy room, the anesthesiologist went over the chart and read my weight as 118, since he could not clearly read the correction the nurse Byna had made. Since I was wearing a Duragesic patch, and knew that the anesthesia was based on body weight, I quickly corrected him and said, no it's only 112.  This lead to a quick discussion about my low fat diet and recent problems with malabsorption, and he asked what my preferred "normal" weight would be. Joanne, the endoscopy nurse was listening in, heard us discussing the patch and low fat diet. She leaned over and said, but why are you wearing a Duragesic patch?  I told her it was for pain control with my chronic pancreatitis. Okay, but why are you dieting when your weight isalready below standard? Because I have chronic pancreatitis, I said.

When we got back to the recovery room, the nurse Joanne reviewed the doctor's recommendations: low fat diet/more high fiber for the diverticulosis. Pain medication as previously prescribed. She was still very confused about the low
fat diet and the need for pain meds, and then I realized then that she clearly did not have enough knowledge about pancreatitis to understand the necessity of both. This is when I knew that having a real specialist, my gastroenterologist, was so important! The general medical professional just does not get enough of the education in this disease that is necessary to understand it. I am not faulting the medical professionals I met yesterday in any way. They were cheerful, kind, polite, compassionate and each made my experience as pleasant as possible. It was a painless experience (except for the needle sticks) and I wouldn't hesitate to do it again. It was just their lack of knowledge with CP that was surprising, and it made me hope that more education and awareness of this disease will be forthcoming, and it is up to us to campaign to see that it happens.

March 11, 2003
My rapid decline necessitated that my husband Bob bring me to the ER at Hilton Head hospital when it appeared that my physician failed to take the complaints made months, weeks and days ago seriously. I could not have done it myself because it turned out that I was in diabetic Ketoacidosis and shock, without energy to stand, with fuzzy vision, extreme dry mouth, Vomiting and excessive thirst. ER was busy, I was in too much shock to notice, just weak, and standing was too difficult. There was no pain, no pancreas pain for many weeks; docs say I have almost reached full burnout. My husband said my eyes were so bloodshot from dehydration in spite of drinking my gallons of water and my physical condition was so that he feared for my life. The admitting personnel agreed.

I was admitted to ER and very soon afterward to ICU. I learned that just thst sudden, I have become a brittle diabetic. I am in shock that I entrusted my physician to responsibly handle my condition, to watch over me. My sugar levels
were 1000 at admittance, then 31 later that night. Then they were 840, then again low, then again 776. They still are not possible to control and have lead all the doctors through much questioning. I had an IV until yesterday afternoon, replenishing my fluids and IV insulin until this morning. Humalog was not working and Lantis helped better, but the sugars still are erratic. I also had an irregular heart rhythm, so had had four EKG's, an ultrasonic electrocardiogram. The cardiologist still has me wired to a monitor with sticky tabs all over my chest...makes moving difficult, as do the IV's in both arms. The actual achievement of the IV's themselves is not a pretty story, two blown arteries, three hematomas, they tried an hour to establish an arterial catherization to put in a central port, but my arteries were so tight it was like fitting a square peg into a round hole. There are horrible reddish black and blue bruises up both arms, all my fingertips are sore and dotted from the 8-10 finger checks they've done daily. Not to mention being stuck several times daily with insulin. The doctor that admitted me is an Internist who I have never seen, do not like, and who is not qualified to handle a complex endocrinology case such as mine has become. A week ago, I had scheduled an appointment to meet with her, as a new general medicine patient for tomorrow...had not even seen her yet. My GI showed up in ICU. I had asked him three weeks ago to have me tested  for diabetes, he said, "okay, we'll let the internist take care of it when  she sees you this week." His opening comment in ICU was a casual, "Oh, so you have had some high sugars?" The nurse rolled her eyes and I was livid with his attitude. He knows that mistakes were made, that I was overlooked in every sense of the word. He is my contracted Gastroenterologist that has been my only source of gastro medical care, yet he has not returned to check on me since the first day I was admitted. He has abandoned my care to an internist whom he knows I do not prefer and who has no experience or knowledge of me personally or as a patient. I do not feel I can let his mismanagement go unnoticed, yet I am unsure what to do right now. The cardiologist has signed me off, but the battle with the sugars remains a constant puzzle, so I am tested several times a day and injected three-five times daily trying to bring me where I need to be.

Karyn's earlier post about the trials of brittle diabetes has suddenly become my life...it's staring me in the face.   I will be in the hospital for a few more days. A consult with an Opthamologist was also recommended since my vision difficulties persist, there seems to be some concern of retinal neuropathy due to the extreme highs. Tomorrow I have to fight to get a consult approved for the Endocrinologist of my choice and figure out how to rid myself of the Internist. I have been told it will not be easy to remove her from my case, that she is the type who will not want to relinquish this "challenging" case. We will see, but I feel I should be free to choose. I still have to learn to inject myself, and learn all there is to know in order to walk out the door on my own with this new disease. Lessons are tomorrow, I have started learning the meal planning and exchanges already with the hospital nutrition list, which in itself is a science. At least now when I revise my pancreatitis diet tips and menu planning sheet I will be able to
contribute some first hand knowledge for the CP-Diabetic menu! That is where I am today. I thank each one of you who has sent me a prayer or a word of encouragement through these trials. As always, your support and caring has lifted me up when my spirit was down. My family has been gathered around me now like a flock of fussy Aunt Bea's and are doing all they can to help...just hope someone remembers to change the cat litter!

I am on Lantus Insulin. I thought it was only supposed to be used once a day since it is supposed to last 24 hours, with the regular insulin to supplement during the day with meals. Your schedule is very different from mine, but
there are still major adjustments to make to mine, since I am still going from a super high to a super low in a matter of hours. It is very confusing...but I guess that is what brittle diabetes is all about. Yesterday I went from 286 pre-lunch to 74 pre-dinner to 308 pre-bed. My internist did start me on did start me on Novolin regular for the daytime highs ... different amounts on a sliding scale according to what the levels are. Maybe this will work better.

Having that loving concern from someone who cares makes such a difference in our well being... my husband was my savior for my DKA, he did for me what the blasted doctor did not or would not when I could not do anything myself. I might not have made it through, if he had not taken the bull by the horns and forged ahead.

Mar 19, 2003  Update
This morning I am going to meet with my internist to discuss adjustments on my insulin. I am still on the waiting list for the endocrinologist, but the insulin adjustments cannot wait any longer, so I hope this doctor can help me get
things under better control until I can get in to see the Endo. The nightly dose of Lantus (25 units) gives me a great morning fasting BG reading, but rises too quickly into the high 200's, low 300's. I realize these numbers do not mean much to non-diabetics, but a good reading would be between 64-140. So I am still running much too high.

My energy level has increased 100%, and I have adjusted well, so far, to these new routines. I am still having severe vision problems, though, and cannot drive. This is a nuisance, since I have to have someone drive me everywhere!
Mornings are the worst, I cannot see anything in near vision, so we are going to stop after the appointment today and find me an even stronger pair of cheaters. I still cannot focus well enough to draw, and putting on makeup takes three times longer and ends up looking like a 5-year-old child applied it!

All my pancreas pain is gone. This still feels very strange. I have so many questions about what to do as far as what I can eat now that my head is overflowing. The diabetics stress a diet low in carbs, high in fat and protein, as carbs elevate blood sugar levels. I do not know whether this is something I should try to do...I guess the only thing to do is to experiment with these diet changes on my own and see what works best. I have introduced much more fat into my diet and have not had any effects from this at all. It is still confusing and I doubt whether the internist will be able to answer these questions, but hopefully she will set me straight with some of the rest.

March 26, 2003 Update

I have had a slew of doctor's appointments, blood tests, cardiology tests and all that fun running around town business. You know, where you dash to make the doctor's appointment in time, then have to fill out three pages of personal, insurance and medical history at each visit, taking half an hour just to fill out the forms, and then  still end up waiting the minimum of another half hour before you even get through the doors to the doctor's inner sanctum? I'm sure there must be one or two of you out there who have had to do this sometime in your life, right.....?

Well, my blood work was good news. My cholesterol is 154, my triglycerides 58, HDL 54, LDL 88. These are all great numbers and paint a healthy picture, and I am very happy about these numbers. The bad news is my thyroid was 5.33,which makes me have a bit of a hypothyroid problem. Normal is .4 to 4.00. Then my Ac1 was 11.9! Normal is 6.00. The Ac1 measures your sugar levels over the last three months and was not really a surprise to my internist; she said that after what had happened to me (the DKA) it was obvious that my levels had been bouncing off the walls for some time.

The good news is that I finally got my appointment with the endocrinologist today and had a thorough and informative session with him. He is changing my daily insulin to a more suitable fast acting insulin and plans a much more "aggressive diet and insulin program" (his words) for me to try to regain so me stability. I wish it could start today, but his diabetic nurse diet and insulin educator cannot see me until April 11! I am counting the days. His physical exam of my pancreas was not as good. For the last several weeks, my abdominal area where the pancreas is has been hard, not soft and pliable as it usually is. When you press against it with your fingers, you can feel the stiffness. Dr. L. did not like this one bit, and asked me when my last CT-scan was done. I told him one had been done in Dec. and that it had "looked  good" (my former GI's words) and all the pseudocysts had gone down to 2 cm. or less, and that my former GI had said I'd only need occasional ultrasounds from then on to check the pancreas. I also told him that I had shown this hardness to my former GI on the last day I was in the hospital when he stopped by my room. Although I was dressed and ready to leave the hospital, when he showed up unannounced I insisted on laying on the bed and having him check this, because this hardness was a new development. The GI said it "wasn't anything to worry about" (ooh...how I hate those infamous words), and then changed the subject and started talking about my ability to self-diagnose my diabetes. I will never trust this doctor again.

Consequently, the endo doctor insists that I have another CT-scan immediately. It was scheduled for tomorrow morning at a new facility here in  Bluffton, but I found out after business hours that my insurance does not cover that facility, so I will be making arrangements to have it done at the hospital as soon as they can fit me in. It worries me, but I had been worried about it for a few weeks now, so I am anxious to have the scan done and find out the results.  I feel very confident in this new doctor and feel relieved that he on my case and wants to follow through with my health care.

My last news of the day, or past two weeks, is that I had my stress test at the cardiologist's right after my endo appointment. With zillions of wires attached, I treaded away for nine minutes at the slow, medium and fast speeds with vigor and no stress whatsoever, just boredom at the dreary scenery.....ha-ha, and passed the test with flying colors!  Because of my unhealthy low weight (106) and muscle loss, I think both the technician and doctor thought I was going to have some trouble, but afterwards the cardiologist said that it was obvious that I had been an active woman before I got sick.

It looks like I am on the road to getting some aggressive help with my pancreatitis and diabetes health care. I am excited about it and feeling some positive energy again after these past few months of pain, loss of control and frustration.

May31, 2003 Update

Last Thursday I took 45 pages of CT-films (10 CT-scans) to my new-since-April Gastro. If you remember, there were questions about the presence of a 6 x 5-cm. pseudocyst in the tail of my pancreas. This pseudocyst has been my companion for the past two years. It was this large in April 2001, was partially drained, and then slowly resolved to two cm. by Dec. 2002. Then after an attack and my DKA in March 2003, it showed up again on a film, filled back up to 6 x 5!  A CT-scan was done a month later at a different hospital and the radiologist said it wasn't there, all he said was that there was a shadow in the left quadrant of my bowel, possibly some obstruction, but no pseudocyst. So naturally, my Gastro ordered a bowel X-ray that was done Thursday, and guess what...no obstructions in the bowel at all...just a little cloud of gas.

The 45 pages of CT-films normally cost $16.00 per page. Fortunately, the first release is free, and mine to keep. My husband and I spent some time studying them before I took them to the doc and there was certainly clear imaging of this large pseudocyst...bright as day, big as a softball, and you could see how it made my abdomen swell out. The smaller pseudocyst (3 x 5 cm). buried in the head of my pancreas was actually harder to pinpoint, but that is the only
one that this Savannah radiologist acknowledges. Therefore, my Gastro plans to review these films with the Savannah radiologist this weekend. He still negates the presence of the large pseudocyst based on the Savannah radiologist's report, and only mentions the 3 x 5 cyst in his office notes. This is so frustrating! I was in his office from 11:00 am to 2:00 PM ... three hours, and really felt I was losing my cool after the first hour and a half. Every visit is this long, half of it is spent waiting in the examing room with nothing to do except stare at the walls, (I've already memorized all the charts of the GI tract, lol)....so I need to take a book with me, and from now on I plan to pack a lunch, too!

Well, back to my story, my pain continues, and since the doc saw some gas on that x-ray, now he has started me on an aggressive antacid regimen, with 30mg. Prevacid at breakfast and 30 mg. at dinner, and 300 mg. of Zantac before bed. Oh  no....not more pills.......I think I'm up to taking something like 20 different pills each day and it's the pits trying to keep track of them all!  He also renewed by Duragesic patches and Percocet. I am still on a "wait and see" schedule about the pseudocysts, right now the plan is to recheck by CT-scan in three months, but after my Gastro sees those other CT films this weekend

The best news of the whole appointment was the great three-page letter that he has signed certifying my disabilities for the SSDI application. I am calling for my interview appointment on Monday.  I desperately need some help now, even with the insurance we have presently, my monthly pharmacy bills are staggering.

So this is my update. I've suddenly had some horrifically extreme BG swings and problems with my diabetes this week, so disappointing after thinking I had it all under control, so that's been keeping me busy, too.

Heidi H. Griffeth

I've been diagnosed with CP about 3 years ago, though I've had Pancreatitis attacks for YEARS (since my early 20's). I have always attributed the pain to my smoking (the pain kind of felt like it could be pulmonary pain), however, I still got these attacks after I quit smoking. I finally had it checked and was diagnosed with CP.

After I was diagnosed, I only had occasional attacks. Now, 3 years, 3 ERCP scopes, 2 CT scans one less gallbladder and several hospitalizations later, the pain is just about constant. So far, my Gastro MD says there is nothing that can be done except for pain management (which he considers a constant supply of Percocet and/or Morphine). This treatment regiment *IMO*, is not compatible with being a parent of 2 small children and holding down a supervisory position in a highly stressful and demanding industry.

Andi 

April 2002, I am 32 years old, happily married with two young daughters (4 and 1). I am physically fit and work outside in an oil refinery. I eat the right foods and do not abuse any drugs or alcohol. My wife is a nurse (good thing) and has the temperament of a saint. We do smoke, and only started since my attacks started.

That was four years ago. I was walking into work from the parking lot and I doubled over in pain. By the time I reached the hospital via ambulance I was crying like a baby. The pain started in the upper-middle of my stomach and radiated around to my back. There were no warning signs and the staff at the hospital wouldn't give me anything for the pain until tests were performed and the results were back. The pain was intense.

Three hours later, the doctors told me my Amylase and Lipase levels were triple higher normal. Diagnosis: Acute Pancreatitis. I was given shot of Demerol and admitted to the hospital. I spent the next 11 days as an inpatient undergoing multiple tests: MRI's, CT scans, Sonograms, and upper and lower GI series tests. I was kept NPO (no food or drink) with a NG tube into my stomach.

I work about an hour and a-half from home and thank GOD for my wife. She has been there all day, everyday through all of my attacks. When I was released from the hospital we had no idea what caused my attack and still do not. I was placed on a low-fat diet and followed all the other instructions from the doctors.

Six months later, I was in another hospital for 13 days for another attack. This attack started at home so it was "easier" on the wife and kids but left us asking more questions. Still no answers. After my sixth attack, which happened while I was already in the hospital from my fifth attack- NPO for 6 days, my doctor sent me to Beth Israel Hospital in New York City to see another doctor and get an ERCP. The result of the ERCP was inconclusive because the ducts were clogged with scar tissue. They did a sphincterotomy and released me.

I had one and one-half years without another episode. I thought I was "fixed". I was wrong. After my eighth attack, I returned to New York for another ERCP. Again, the results were inconclusive because the scar tissue had increased and he could not see as deep as he wanted. He installed a stent attempting to spread the ducts and look farther into my Pancreas. I was to go back in three weeks for another ERCP, for him to remove the stent and who knows what else.

I have yet to have some of the other symptoms so many others seem to have. No nausea, vomiting, diarrhea or constant pain. When an attack comes, it sends me running to the nearest hospital and an extended stay. I am currently taking two Creon 20's with every meal and one Prilosec daily.

Between the attacks, I feel fit as a fiddle and almost normal. I have left out some details and did not list all of my attacks but they were all of equal measure. There have been a total of 10 attacks, and some were just a treat and release kind of thing. When I returned to NYC for my next ERCP, the doctor told me his plan of action. He removed the first stent and yes, it did as he had hoped. It enlarged the duct enabling him to see a little deeper and finally he was able to see inside my Pancreas. What he saw was good news (I guess), The only apparent damage inside was at the mouth of the duct, and the rest seemed to be irritated but not severely damaged. He inserted another stent (a little larger) trying to open the passage more, sent me home, and wished to see me in another two months to repeat this procedure.

I have had discomfort from the ERCP but no recurrence of Pancreatitis or pain. I am again feeling "normal" and hope he may have found the answer. The duct restriction leading to a buildup of enzymes in my Pancreas and thus auto-digestion of it. I will ask him if there is a way to free the clogged ducts for good, or if I will either have a stent inside forever or will I need to continue with these ERCP's.

On 5/20/99, I returned to Beth Israel Hosp., NYC for my 4th ERCP. The plan was to remove the existing stent, evaluate the result, and determine the next step in my care. The good news is after removing the stent my doctors decided there was not enough improvement to warrant installing another, so he chose to just remove it and see if what they have done to date will enable me to return to a "normal" lifestyle. In other words, he released me from his care (for now). His care and the results have me optimistic.

He told me he has no reason for any follow-up appt., That only if and when I have another attack am I to come back to him. He did continue my medications; 2 Creon 20's with every meal and 1 Prilosec daily. If that is what I need to do to remain pain/attack free I will do it. I will update my story and check back often to hear how others are doing and if there is a light at the end of the tunnel!

Thanks and GOD Bless,

Keith 

I am 47 years old and had my first attack 10 years ago -- a week after having my gall bladder removed. I was diagnosed the next week with Pancreas Divisum and had my first Sphincterotomy at the Indiana University Medical Center. I did not have any attacks for SIX years. Then three years ago, I got a pain in my right upper arm that would not quit. I went to the hospital, then the pain dropped to my abdomen, and back - Acute Pancreatitis was the diagnosis.

I have had 12 attacks in three years -- with hospitalizations (and five where I stayed home). I have had four stents and Sphincterotomies - none of which have worked. At my last hospitalization, the middle of February, my amylase was 4000+ and my lipase was 8000+. The ER nurse thought it was a mistake and should have read 800 so she double checked and the 8000+ was correct. She was amazed I was still alive! The pain was the worse ever and required Demerol, Morphine, and Dilaudid before it was under control.

I started Sandostatin/Octreotide February 2002. I decided to try it because I have been hospitalized with recurring acute Pancreatitis six times since last June (idiopathic, of course -- although I have Pancreas Divisum). I give myself 3 shots of 1 ml a day. It isn't so bad, and hardly hurts. So far, I have not had any side effects except a little nausea, but I suffer from that most the time, anyway. I don't know if it will work, but so far, I supposedly don't have any damage to my pancreas so Dr. Lehman (at Indiana University Medical Center) is hoping that this drug will minimize the pancreatic secretions so my pancreas doesn't have to work so hard. I hope that I will not get any more attacks, at least not bad ones. I am trying to avoid getting chronic Pancreatitis.

3/27/2002, Friday night, I got severe pancreatic pain, nausea, and vomiting. I thought I might have to go to the hospital again, but I was bound and determined I would NOT GO. I started my Vicoden, Vistaril for nausea, and laid on the heating pad for my backache most of the weekend. I drank my green tea and lots of water to keep hydrated. I went to work yesterday and feel fairly back to normal today, with just a little nausea and back pain. I am hoping that the Sandostatin kept me from having a severe attack. Dr. Lehman said I might still have attacks, but they would not be as severe.

Friday I ate a donut for breakfast, a hamburger for lunch, and a candy bar at mid-afternoon. Needless to say - I do not eat that much fat in a MONTH! I think it contributed to my Pancreatitis flare-up that evening.

4/15/02 An update on my Sandostatin / Octreotide usage: I have been taking it for 6 weeks now, and have not been back in the hospital. I did get an attack a couple of weeks ago, but managed to stay home on medications for pain and nausea, liquids, and a heating pad for my back. I also do acupuncture and it seems to help for those looking for alternative methods.

I still work as an assistant principal at a large inner-city high school. Work does have its difficulties. There is continued "harassment" due to our illness. My boss has had comments like "I know when you are going to get an attack." How does he know that when I DO NOT EVEN KNOW! If I get upset about something, he says "don't let yourself get upset -- you know what will happen..." Although there is a lot of stress, I love my job. I have TERRIFIC insurance. The Sandostatin was going to cost me nearly $1500 a month. I only pay a $25 co-pay! No wonder more people haven't tried the Sandostatin for an extended period -- who could afford it?!?!?

I found PAI in August 2001 and it has gotten me through many a painful, sleepless night! So many caring friends to listen, support, and provide information.

Cecilia
Mesa, Arizona

I am a 46 year old female and suffer from chronic pancreatitis. I live in Ohio, but go to Indiana University Hospital and am under the care of Dr. Lehman, a Pancreatic Specialist. Please sit back, relax, and read my story. I hope I can help just one person that reads this, begin to understand how this disease affects us, or possibly find some answers to their own illness.

My story began New Year's Eve 1996. I was out with my husband visiting friends. I have never been a drinker other than an occasional glass of wine or a beer for special occasions. That night I had two drinks, nothing more. I became very ill with severe pain in my upper chest, constant vomiting until after six hours I could not take it any more. This began my constant trips to the ER. The doctors and nurses asked my husband and me repeatedly, "How much does she drink each day?" Boy do we get tired of that one! We both continually replied that I do not normally drink but had had two beers. No one believed us!! If I had a nickel for every time I would be asked that question from here on out, today I would be a millionaire ten fold!

After six hours, IV fluids, and numerous pain medications, I was finally able to go home. From that day on, I would get ill, out of the blue, several times a month. Test after test showed "in the normal range" and there were no answers. Finally, I found a doctor that suggested I have an EGD. That is where they go down your throat and into your stomach to check out the stomach walls and do a small biopsy. I was diagnosed with H Pylori, the stomach disease that causes ulcers! To their surprise, there was not one ulcer but my stomach walls were raw and pitted, and there was an excess of bile in my stomach. I took a nasty pill treatment for ten days. It made me sicker and caused pain in my stomach. Nevertheless, when it was done I did feel better. Hallelujah, it is over!!! WRONG it was just the beginning.

I still was getting sick of and on and no help in sight. I went through general x-rays, blood tests, barium enemas, upper GIs, ultra sounds, CTs, MRIs, MRCPs, thyroid tests, EGD's, constant ER visits, the list goes on and on. I had some of the same tests over and over! Still no answers and we were getting pretty discouraged. There were times they told my husband it was all in my head, and maybe we should consider seeing a psychiatrist! To tell you the truth, I sometimes began to question if it was not all in my head! Maybe somehow I was making this happen? Then when I had an attack, I knew better.

By February of 2000 I was getting sick almost every day and still had no answers. Another EGD and the surgeon said I should have my gall bladder out. It looked "sludgy" and will "probably" stop these attacks of severe pain. OK, fine, I did it. For the entire month of February, I was in and out of the hospital, twice by ambulance.

The pain was so severe I thought I was having a heart attack every time one hit. They even sent me to a special heart hospital to have a scan done, yep, normal! They had no idea why I was ill or what was causing these spells. The pain was so severe that I could not breathe. When they hit the pressure is unbearable; it hurts clear into my back. They finally decided I had IBS, Irritable Bowel Syndrome. It is just a spastic colon that is causing my pains, and I should stop being such a baby and learn to "LIVE WITH IT"!! Easy for them to say!

I went through dozens of doctors and gastro specialists. They all kept telling me everything was normal. Continue on a low fat diet and deal with it. Throughout the next couple of years, and all the testing, I was diagnosed with not only IBS butâ Fibromyalgia, mucus Colitis, erosive GERD, spastic colon, sever Osteoporosis, pinched nerve in my back as well as degenerative discs, excess stomach bile, the diagnoses went on and on. I lost over 30 pounds in barely a month, woke up nauseous every day, had constant pain, and the fatigue was awful. Several specialists said they thought it was the Sphincter of Oddi or pancreasâ but my amylase, lipids, and liver levels were all normal. Therefore, it couldn't be that.

I have since learned that not everyone with Pancreatitis has abnormal levels. They gave me prescriptions for pain meds so I could avoid so many trips to the ER. Sometimes they worked, sometimes they didn't. When they didn't, it was back to the ER for Morphine and Phenergan until the attack stopped. I can't tell you how many times we would travel back and forth to the ER in that next year. Repeating test after test with no help. Not only was I feeling depressed and at my wits end, but so was my husband. He knew from how I looked and acted that something just wasn't right.

Thus I began a search for answers on my own. The Internet was a big help and full of information. That is when I found a wonderful group of people that all seemed to have the same problems I was having. They all have pancreatitis and several were speaking of a Dr. Lehman in Indianapolis, IN. I got his number from one of them and made an appointment. In three weeks I was having an ERCP done. This is where they go down the throat as well, but now they can continue on into the bile duct, pancreatic ducts, and see all of those organs in detail. I was then diagnosed with SOD, Sphincter of Oddi Dysfunction. That is where the sphincter muscle in your stomach has too much pressure and the stomach "juices" can't flow through properly. Normal pressure is about 40, mine was OVER 500! They couldn't understand how I functioned for so long with a pressure that high. One of the highest pressures Dr. Lehman had ever seen. He invented this procedure so I know he's seen many!!

Well, they cut my sphincter muscle in two places and inserted two stents in my ducts. There was severe scarring of my pancreas and bile duct, so they assume I had passed enormous stones at one time. (Probably one of those days I had to call 911!) This surgery was done October of 2001. I had a rough time healing from it. I was back in the ER three times in November and twice in December. They say an ERCP irritates the organs and it takes time for them to settle down.

I finally started feeling better. It was wonderful, on a low fat diet, but could eat, go out, and enjoy my life again. IT WAS GREAT!!! Things were looking up and we began to make plans like we use to. But thenâ in March, 2002, I started having pain again. This time more severe on my left side and in my back, my amylase levels were going up and down like a yo-yo and I was diagnosed with chronic pancreatitis. The problem now is my SOD is also back.

One major problem I noticed right off the bat, is that much of the time you don't "look" sick. People judge you, think it's all an act for attention, or tell you to deal with it if it's not curable. Well some days I do cope, others I don't. I take advantage of the good days and ride out the bad. My problem is when I have a good day, maybe once or twice a week if I'm lucky, I over do. Then I pay for it ten fold the next several days! You just can't win.

I spent all of last week in the hospital getting IV fluids and pain meds. Once my pain was back to normal, I came home. Now my veins are so "tired and weak" they must move my IV to a new location every day. It burns really bad when fluids go in, my hands and arms swell, and I bruise terribly. It hurts for weeks. I am told my next IV will be a central line, an IV placed in one of the larger veins in the neck or clavicle. Yuck! But I've heard once they are placed, they can last for months and there should not be pain when medications are injected. Dr. Lehman said that after reading my charts from the local hospital and his own evaluation he believes the Pancreatitis is getting worse.

I know now that this is an ongoing battle that will never end. I had to quit my job last May and am still trying to get Social Security Disability. I'll finally have a hearing at the end of this year for approval. It's a long, hard, process but we won't give up!! In the end it will have taken almost two years to get disability. I am lucky to have a spouse to get the bills paid. I have no idea how someone on their own does it.

My advice to anyone with health problems, that are told over and over there is nothing wrong with them, is this: You know your body better than anyone, you know when something isn't right. Keep fighting, doctor after doctor if you must, until you get some answers. If medications or treatments don't help, SPEAK UP!! You must be persistent, educate yourself, and hang in there!!! Granted, I have good days and I have bad days. Some days I do ok and others I just cry and want to give up. But you cannot give up! Lean on God, let him be your strength when you can't be strong. Praise him for the good days, and let him share the bad ones. You can make it through.

GOD BLESS!!

Elicia 

Ohio

Tammy's Story

In January of 1990 I was diagnosed with Pancreatitis. In April of 1990 Richard and I got married. I would have bad attacks and when he would take me to the ER; sometimes I felt like he would get upset with me. The pain was so bad that I couldn't sit still. I would go around and around in circles. And all I could do was plead for someone to help me. On my first Anniversary, April 1991, I was in the hospital to have my GB removed with 40 stones. In August of 1991 I found out that I was 2 months pregnant. I was so excited, my first child. My sister and my cousin was also pregnant at the same time. We had big plans, it was our first child.

But in September I started having some real bad pain. I was put in the hospital for a 24 hour watch. The nurse told the doctor that I wasn't able to go home. I was placed in the woman's center. In October I was 20 weeks Pregnant and I had my appendix removed. When I came back from surgery I thought it was weird, that I couldn't lay on my left side, but I could lay on the right side (The side I was just cut on). I went home for 2 days and was back in the hospital for pain in the left side. One of my doctors came in and told me that there was nothing that they could do because I was pregnant. They needed to do a CT scan, but wouldn't because of the baby inside me. I could feel the attacks coming on and all I could do was get out of the bed and scream.

I felt like I was on fire, and I wanted them to put me in a tub of ice. I was getting Demerol, 100 mg every 2 hours, and I was on a pain pump that would give me Demerol every 30 min. I was also getting Phenergan. Even though I had a NG Tube, I was still very nauseated and throwing up. I couldn't lie down in the bed. I slept sitting straight up in the bed. Finally I told the doctor that I was going to die, she needed to do what she had to make the pain stop. I was sent for a CT Scan at 4:00am and found out that I had a Pseudocyst. I was taken down stairs and a very large needle was inserted into the pancreas to drain the fluid. Well, the fluid was too thick to drain.

A few days later I was put to sleep and a drain tube was inserted. It didn't work. The fluid was too thick. On Friday, December 13.1991 I was taken down for surgery. The doctor cut a hole into the cyst so that it would drain into the stomach. I was placed into ICU. I was 29 weeks pregnant. My sugar was so high and they couldn't get it to come down, they just gave me a bag of Insulin and would come in every hour to check my sugar. On Sunday, December 15 ( Two days later) my husband to make a choice. It was either me live or the baby live. My husband prayed and prayed for an answer.

My blood pressure had gotten so high that they had to take the baby. She weighted 2 lb. and 7 oz. And was 21 inches long. Before they took her, they gave me a shot to help her lungs produce faster. She was placed in the NICU unit on the 3rd floor. I was taken back to the ICU on the 2nd floor. It was 4 days before I got to see her. She was so tiny, all I could think was what have I done. If I wasn't sick she would be all right. That night I was let out of ICU and placed on a regular floor. I was there for 2 weeks. About 3:00am I started throwing up blood. And was but back into the ICU. This was my 2nd blood transfusion.

February the 5th I was able to come home from the hospital. My daughter got to come home on February 10th. She weighed 4 lb. and 5 oz. She is now 10 years old and almost as tall as me. My days of Pancreatitis weren't over. I was in and out of the hospital for years. I drove my husband crazy. But he loved me enough to stick with me. (Even though people tried to get him to leave me.)

In October of 1995 I was sent to Charleston, SC at MUSC for tests. There I had the stint placed into the pancreatic duct. It just made things worse. I ended up having a Puestow done and having another blood transfusion. I was in SC for 1 month. After the recovery I started seeing signs of improvement. In April of 1999, I had to have a hysterectomy done. I had cancer cells, that were burned and frozen several times, but kept coming back. That surgery has really helped also with the pain from the Pancreatitis.

I still hurt and have very few days where I don't have any pain. But God has helped me to deal with it. And I know my limits. When the pain starts getting bad I put myself on the liquid diet. I have great support from my family (My Dad and both of my sisters also have pancreatitis) and friends.

Thanks for letting me share my story with you.

Tammy

TN