Anita's Story

July 2003  

My name is Anita; I live in Spokane, Washington. I have chronic pancreatitis.

The cause of my pancreatitis is not known. Initially, the doctor suspected it was my gallbladder. However, after it was removed, I continued to have pancreatitis attacks. I was told that my serum enzyme levels were elevated in an unusual pattern. I do not know what they meant by that. I was tested for hepatitis since I was so jaundiced. Those tests were negative.

Eventually, an ERCP was done and Sphincter of Oddi Dysfunction was confirmed. A stint was inserted into the bile duct. This was only the first of many ERCP with stint placements, as the stint would migrate into the main duct and need to be removed. My local GI then discovered I had Pancreas Divisum and referred me to Virginia Mason to see internationally renowned pancreatologist, Dr. Kozarek.

I was pleased with Dr. Kozarek as soon as I met him. He is one of the top Pancreatologist in the field. The nurses said that people come from all over the country to see him. They reminded me that pancreatitis is a very complex disease and everyone responds differently to the treatments. It may take time to find the right one. Although the first treatment of Botox injections was unsuccessful, I felt comfortable to let him try a Sphincterotomy. This worked well, and provided me with over a month and a half of pain relief. 

Today, I am returning to the Virginia Mason to have Dr. Kozarek perform an endoscopic ultrasound with Secretin test. He has not discussed any pancreatic surgeries, like the Whipple, but I would trust any of his recommendations. At this time, I am out of both sick or vacation days. I cannot afford that much leave without pay.

Anita C
anilyn1@msn.com
Spokane, Washington



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Bob's Story

August 2003

My name is Bob; I live in Waukesha, Wisconsin, near Milwaukee. I have chronic pancreatitis.

I can see I am not alone. I have only read a few posts to know I am not alone with all these feelings. I have been living with chronic pancreatitis for about four years. It was caused by high triglycerides

It nearly claimed my life five times; six if you count the appendicitis that went undiagnosed because they assumed it was the Chronic Pancreatitis. The appendix blew. It was at least two days before they did surgery. I spent another two weeks in the hospital. The doctor said I was a very lucky man, although I continue to go through the pain, fatigue, and nausea of the chronic pancreatitis.  

It is wearing thin on my wife, and children. So far, there seems to be nothing that works to keep the triglycerides down. I do not drink alcohol. The only thing we do now is to check my blood every three months. The doctors are scratching their heads and reaching at straws. I am on "Fish Oil" tablets, as well as several other pills, and a patch for pain. These do not always manage the pain. Frustration is too mild a term for what I feel.  

After the last bout with pancreatitis, my intestines were badly burned by the acid, and now I have a hard time eating. I took my wife out for her birthday and had to leave her twice during dinner because of the pain. I barely made it to the main course of the meal before I put up the white flag and brought the rest of the meal home. My family thinks I avoid them since I often have to stay at home because I hurt so badly. My oldest daughter is starting to ignore me because, if I am not working, I am lying down. It is getting harder to stay positive. This is no way to live

I do not know what I would do without this group. At first, I really did not know much about this disease, and it seemed the neither did the doctors. Then, being on such strong pain medication, my wife turned on me. Since she has MS, I would think she would understand, but she thinks if I was sick, I went to the doctor, I should be well, now, and not in pain. To prove to her, and myself, that I was not addicted to the pain meds, I purposely did not take them. Since I was still in extreme pain, I had no question about the situation. After reading through the posts on the message board, it was the first time I did not feel alone. In fact, many folks on this group were taking the exact same pain meds as I was! I printed out those posts for my wife to read.

When I taken to the hospital, the doctor told my wife that I would not make it through the night. She sat at my bedside angry because she thought I had brought this on myself because I was not watching my diet. My brother, who was there that night, knew she was thinking this, so he purposely asked the doctor if this could have been prevented. That night my triglycerides were over 8000. The doctor said clearly that my triglycerides were not elevated because of anything I ate. Weeks later, after I was out of ICU, she came to me, tearful, and apologized for the things she had said.


Story Update - August 2004
Our insurance company had a falling out with my health care provider organization. It happened while I spent four months in the hospital. Consequently, I am thousands of dollars in debt and could not afford to see my doctor anymore. We finally switched to a doctor that was in my insurance plan, but he is still waiting for records. He agreed to write me prescriptions for the pain pills, but not the patch until he could review my records. This forced me to discontinue the pain patches abruptly and not taper off, as has always been discussed. This caused me to go through withdrawals that were quite painful.

I have been having symptoms and getting into see the new doctor was a long process. First, they explained that some people do go from doctor to doctor to get the pain medications. I told them, you do not understand, this is my situation. Do you think I wanted to leave the doctor I had who knows more about my case than anyone else does? The plain and simple truth is for some reason my body produces the triglycerides regardless of my diet. When I was in the hospital eating nothing and being fed by IV TPN, they were still going up and down.

Finally, after two difficult weeks of feeling like a ping-pong ball, going to the urgent care of the group, etc., I was given an appointment with one of the physicians. I was shocked when I realized we had met. He was the senior intern at the hospital when I had my first attack. This did not give me any confidence.

That unforgettable day, I had gone to the closest hospital. I spent three weeks in ICU and then one week on a general floor. I was spiking fevers, in a lot of pain, and my medication was changed. After suffering terrible pain for three days, I had finally had enough. I called the doctors in and said that I did not hire them, I did not ask for them, but I sure was firing them, and I wanted new doctors. They then explained that they had just rotated onto this service and had to review my case. They then made sure I was given adequate pain medication. 

Although I was spiking fevers, they released me from the hospital with instructions to see my doctor in 7 days. We set the appointment, but asked several times if they contacted the doctor and sent my records. They gave us their assurance the doctor would have my medical records. It was barely seven days later when I showed up at the doctor’s office with high fevers, weakness, and pain. I was promptly sent to the hospital where he was. They could not even get a scope down my throat because my stomach was burned and my bile duct was blocked. I ended up having five drains in my stomach and one in my bile duct.

Now, I was going to see the doctor that originally saw me in the hospital. Well, at least he was aware of my case, although, he did not have my records. I reminded him that I had high triglycerides and suggested they do a blood test. The last blood test done showed my triglycerides approaching 700. I was then informed that if the level gets to 800, they would put me in the hospital for IV tube feedings.

The new doctor called tonight and said my triglycerides were at 1800! He wants to put me on Tricor and Crestor, a medicine instead of Lopid, and then repeat the blood test. Here I sit near bankruptcy over doctor bills, trying to find a better job, and I have a real fear of another attack. He has not read my records, my triglyceride level is at 1800, and he wants to change my medications.

I am extremely thankful for this group for the encouragement and insight. In fact, I am thinking about taking some of these messages to my doctors.


Bob P
bobpotter@wi.rr.com

Waukesha area, near Milwaukee, Wisconsin


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Catherine's Story
August 8, 2003

 My daughter is 17 and suffers from Chronic Pancreatitis with a Hyperlipidemia Type V.  It’s Mixed Lipidemia with high cholesterol & triglycerides; she was diagnosed at age 9. She is treated for the lipid disorder with Lopid. This has helped lower her numbers remarkably. I'm not suggesting it’s a cure all but her numbers went from 1200 to 300.  She needs to be very careful with her diet as well. Stress definitely exacerbates her attacks, no doubt about it.

Catherine Luis
cathy273@msn.com
New Jersey



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Cynthia G's Story

November 2003

My story started in 1978, shortly after I came back from Kashmir, India.  I was a world traveler back then as I worked for Trans World Airlines from 1967-1981.  It started with vomiting & diarrhea in India & continued when I returned to NYC.  I lost weight & continued to have loose bowls & eventually went to the Jetti Katz stool clinic & was diagnosed with shigella, a type of bacteria & they treated me with shots of sulfonamides.  I then started to have many infections, mostly nasal-pharynx & ear infections, things like conjunctivitis & then giant swollen painful lymph nodes.  After a few years of this, I was put into New York University hospital for tests (prognosis was lymph cancer) & all they found was mastoiditis.  Next year I had a cervical lymph node biopsy & they diagnosed chronic lymphendenitis!  I could have told them that....chronically inflamed, but from what?  Eventually, they found I had a very strong titer to the EBV, or Epstein-barr virus, 1/640.
            Then in 1981 I started to feel sick from foods like ice cream or steak & I then went to a holistic doctor & M.D. that said I was deficient in zinc, chromiun & EFA's or essential fatty acids.  He put me on evening primrose oil & pancreatic enzymes & betaine, cause I had low stomach acid.  I felt some better for awhile.  I also went to a doctor who specialized in intestinal parasites of which he found rare stains of giardia lamblia & entamoeba histolytica, obviously from India.  I then tried a cocktail of arsenic, carbazone & something else I can't remember & then I tried Flagyl or Metronidazole, which I could not tolerate.  I have taken it since then a number of times.  Eventually I went from full time at TWA to part-time & then part-time to a medical leave & then quit.
            In 1989, we moved to Charleston, S.C. for my husband to try his hand at his own business, & because I wanted a warmer clime.  Well, I'm still cold, but I would have probably been a stiff by now if I had stayed in NYC.  In 1997, I saw a G.I. who diagnosed me with Barretts' esophagus ( I had already diagnosed myself with chronic pancreatitis, & fat malabsorption,( by my massive medical books,) then on to MUSC for the final diagnosis of Idiopathic chronic pancreatitis & steatorrhea, or fat malabsorption & no cancer.....stupid me, I did not know they were looking for cancer.  So......I also have DDD, degenerative disc disease in my cervical & lumbar spine & this year my thoracic spine has DISH disease, massive bone growth that looks like a waterfall .  I have herpes simplex in the sacral gaglion or tailbone  area, also shingles & the EBV, so these herpes viruses really dig me!  I also have gout, possibly from 20 years (off & on ) of the pancreatic enzymes, I now take a vegetarian digestive enzyme by Vitaline.  So after all this, I applied to SS disability in July of 2001 & after being turned down twice, I defended myself & finally won last November when I turned 55 years of age!  I actually saw the 1st check this November....you can't hurry this process, so don't even try!  I think they would prefer maybe that we drop dead while waiting.  So that is my story.....What caused it is anybody's guess........oh yes, I have 2 auto-immune diseases on my Mothers side:  AS, or ankylosing spondelitis & scleroderma.  But I am still alive after approx. 20 years or so of pancreatitis & that is the main thing. Sincerely, Cynthia Glentzes in Charleston, S.C.( the woman who dresses like an Eskimo)

Cynthia G
cynthiaglentzes@msn.com



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Davis's Story

My name is Davis Hull and I live in Mississauga, Ontario, which for the benefit of our friends to the south, is part of the Greater Toronto Area. I am originally from Eastern Canada....Springdale, Newfoundland.  I have been lurking in the background for about a month. I am a 57 year old Industrial Electrician who was hit with the first attack of pancreatitis in June of 2002 after gallstones blocked my ducts. I had my gall bladder removed in July.  I now have two cysts on my pancreas that don't seem to want to go away. I have another CT Scan scheduled for August 19 and if they are not shrinking I guess I will have to go under the knife to have them drained.  I am also a type 2 diabetic.

Davis Hull
davray@sympatico.ca



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Donna's Story

I have had pancreatitis since 1986, and it was caused by alcohol. I was told for years I had to quit drinking or I was going to die! I guess the drinking was more important to me than my children and my husband (at that time, since divorced) As the years went on I spent a lot of time in and out of the hospital because I wouldn't give it up. Then in Sept 2002, I was told that the only way to save me was to do a Partial Pancreatectomy, but the surgeon said he wouldn't touch me until I was sober for at least 6 months.

I had to drive 150 miles one way to see that surgeon--on the way home I said to Ricky, this is it-I've got to do it. I never touched a drink after that. It's been almost 17 months and I did it all on my own. I'll tell you, I was an everyday drinker, I used to drink alone, I just didn't care! Not all people can do it on their own, I was just lucky. Eight years before that I went into a rehab center for 30 days, forced by an employer or lose my job, but I still wasn't ready. The day I got out after spending 30 days in there. The first thing I did was stop at the nearest store and bought a beer. You won't quit drinking until you are ready. I gave up my two beautiful daughters, at that time 7 years old and 14 years old to my wonderful husband and ended up divorced. I ruined my life.

But, I did get sober. And, six months later the surgeon took off the head of my pancreas which he said was just a brittle mass of calcification that was causing all my problems. He also removed my duodenum in order to stretch my intestine so it would fit back where it goes. I was very weak but got stronger with time. I couldn't do anything for 2 months.  I lost another 10 lbs in the hospital. Thats a total of 50 lbs in 6 months.  I can eat anything I want to, although I have no appetite.

My doctor told me that this is the beginning of the rest of my life!!! A life with 3/4 of my pancreas removed, with diabetes, with fibromyalgia. But, a life, my life. It is never to late.
Just my story, hoping that it might help someone!!
Thanks,
Donna Goodine
Hermon, Maine 04401
roachy55@yahoo.com



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Cassie's Story

 My daughter Cassie just turned 13 this month, she had her 1st attack in Nov 2000 and got the diagnosisof idiopathic chronic recurrent pancreatitis or (ICP) in Oct 2001.  Since then we have been on a constant rollercoaster ride with her. Many many Dr's visits with intense pain yet no elevation of Her enzymes.  Other times she has no elevation, but when I take her back the next day levels are threw the roof.  That is the nature of this beast it is very unpredictable.    Cassie does not have a trigliceride problem yet she does have high cholesterol, always has.  Even now after 2 1/2 years on low fat diet.

I have found that both Cassie peditrician and her GI are very conservitive in her treatment.  Kids are even rarer than adults.  I was even told that  because CP is so rare in kids there is no such thing as a Pedeatric GI who's specialty is Pancreatits in this country.  Just alot of guys who each know a little bit.  She scares them, they don't know what to do for her, their biggest fear being drug addiction.  That's why she can have intense pain and they can send us on our way.

Pancreatitis can run in families.   Both Cassie and I posess a genetic mutation that
predisposes some to CP.

Patty Hurst, mother of Cassie Hurst
Rattpack1@aol.com
Bangor,



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Donna L.'s Story

 Saturday, November 15, 2003
Feeling Happy
1984

The year was 1984, and I was only 14.  My mom had announced to our family that she was getting a job at the police department as a radio dispatcher, after scoring in the top spots of her exam.  I was very excited for her.  During the course of her employment, she had accomplished many things.  She fought hard for herself and the other dispatchers to have more overtime opportunities, and be treated as fairly as the police officers were treated.  She was looked up to by many for her outstanding abilities and her outspoken nature.  Many years later, when the 911 system was introduced, her job became more interesting and more strenuous.  But she prevailed as always.  Training other dispatchers and desk officers to handle this new system became second nature to her, as she spent many years as a volunteer for an ambulance corp.  I thought she was outstandingly courageous in the way she handle some of the most severe calls, from telling a parent how to perform CPR on their child, to keeping a victim calm on the phone until help could arrive.  It would be far too great a list, to name the many lives she has saved through 911.  But I can tell you that there are a great many people out there who are thankful and proud to this day that she was there for them in their time of need.  And I was proud to have a mom who I could say was a hero everyday.

Feeling Worried
2002

After many years of visiting my mom's job and seeing how she worked, I realized just what a stressful job it was.  But nothing could compare to the stress she would have to face on that dreadful day in November of 2002.  On the 12th day of that month, my mom was diagnosed with Pancreatic Cancer.  The woman who was my hero, and whom I thought was as tough as they come, became a shadow of herself on that day.  She faced despair and hopelessness.  She faced death.  They told her there was hope to go in and do surgery to remove it.  But on November 14th, they were proven wrong.  As she laid in the recovery room of the SICU, we learned the horrible truth that the cancer was inoperable.  She stayed in the hospital for several days.  But with this, the hospital had never been so protected in all its years.  The swarm of men and women in blue coming in all day long was over-whelming.  This made her very happy, because she knew then the respect her co-workers had for her.  And she wasn't ready to give up her position as top dispatcher.  For the next 2 months, I brought her to and from her chemotherapy and radiation treatments.  Her co-workers and other uniformed officers made sure she knew they loved and missed her by calling her up, sending her flowers and cards, stopping by the house to see her, and putting together a fund raiser to send her to Atlantic City when she felt better.  This made her even more determined to fight to live, so she could get back to work and bust their chops.  By the end of December she finished her therapy.

Sunday, November 16, 2003
Feeling Sad
2003

I told my mom I was pregnant with my 3rd child.  She was not happy at first, because she was thinking about her own mortality.  Later that day, she called to apologize and tell me she was happy.  Her happiness was short lived.  On the Thursday before Valentines Day, mom's doctor had her admitted into the hospital once again.  She was dehydrated and having pains in her abdomen.  I spent a few hours with her on Valentine's Day until she had to go down for testing.  I told her I loved her and went to my father's house to get my daughter.  I went home thinking things would be fine.  Come Saturday the 15th, I let my 8 year old son go with my dad to the hospital to give his grandma her valentines.  This would be the last day he would ever spend with her.  After the two of them left the hospital and were on their way back up to the house, mom called.  She told me the bad news that the cancer had spread to her liver.  Dad went back to the hospital to be with her.  I went home to my house completely at a loss.  How could this happen to a woman who dedicated her life to helping others?  On Sunday, February 16th, the world tragically lost a great woman.  My mother.

Sunday, November 16, 2003
Feeling Sad
A fallen hero

The days that followed my mother's death, blurred into each other.  From the many phone calls to be made, to the funeral arrangements, to having to write my own mother's obituary.  Some of the most painful things I have ever had to do.  But there would be some joy as it may, having people tell me all the wonderful stories they had of her.  The best thing of all, was the fact that one of the peoples whose life she had touched via the 911 system, had taken the time to show up to her wake and show his respects to the woman he never really knew.  That showed me then and there, that she wasn't only my hero.  And through all the wonderful stories I will tell my newborn daughter of her grandmother, she will get the chance to know how great her grandmother really was.  So remember one thing, when you get mad at a police officer for pulling you over, or you need the help of a 911 dispatcher, that these people who are there to protect and serve you, may one day be your hero.

Donna Lent



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Glen's Story
2/15/2003

I am a bit dazed and confused from lack of sleep and pain at that point where I can't think straight. I think I am in trouble, my latest attempt at relief fell through and my doctor says he doesn't know what else to do. (It was a nerve block) I have tried stents, drugs, hypnosis, massage, acupuncture, vitamins, a chiropractor, vinegar, sleeping pills, enzyme therapy and dieting, I may have missed something, but now my unemployment is running out as well as my money, so if any one has any suggestions?

I have idiopathic chronic and severe pancreatitis, am 45 years old, and end up in the hospital about once every six weeks. My last attack scared my sister so bad she kicked me out of the house. (My nephew is only four and hasn't said boo to me since the attack.)Just a few weeks
prior to that, a friend of mine since fifth grade died from pancreatitis, so my family has been treating me with kid fingers now. My son is eleven and freezes up whenever I have an attack and I have so far been unable to get his thoughts on all this. I know he is afraid I will die and I can't tell him every thing will be ok. My own up bringing was emotionally brutal and so I have no real understanding of his sensitivity.

It took years of therapy for my doctor to finally explain that I suborn my emotional pain so much; he has to describe them to me. It got me through as a kid, but now it triggers attacks of pancreatitis. (While going to him, my attacks actually lessoned, in intensity and duration)
How can some one like me get through to some one like him? He is out going, friendly, warm, trusting, and well liked. It tears him up to see me being carried off to the hospital, but you all know haw sudden these attacks can happen, if I could I would shield him from all this. His mom is the one that made him who he is, but she is too good at seeing what she wants for me to get through to her. With all the medications I am on, my sex life has been zilch for going on six years. Pain is my only lover any more. If only I could get a divorce.    I feel much better now, I have been pretty suicidal in my thoughts lately, and maybe this felling of getting it off my chest will last.

I applied for SSD a few months ago and am in the waiting stage now. I am just in a deep funk and can't seem to shake it. Talking to you guys really helped a lot, and I appreciate it. I live in Washington State and have Pancreas Divisum. I have had it all my life but was only diagnosed 14 years ago. I am in almost constant pain and lack of sleep has taken a toll on me, but I will get better. I know that, but since September I have been able to do very little; even just visiting is a
strain.

Thank you for the words of support. They help more than you know. I have had this condition all my life, but since September, I have had little but pain to occupy my thoughts. I tried school but in trying to study I stretched out my pain medicine, and ended up in the hospital and had to quit. I just can't seem to shake this despair, though I know I will get better in time. I am waiting for some advancement in medicine and I am sure it will come one of these days. I hope it comes in time for us to see it.

Glen M.
Washington
uv2209@yahoo.com



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Patty H.'s Story

I've had off and on pain in the upper center and left side of my abdomen and mildly in my back, pain levels have been from still able to function, a Tums calms it enough to increase restorations verge of tears, put me in a ball.   Pain always includes belching the most horrible tasting and smelly burps (rotten eggs) And the burps hurt!   One Night I had 4 bouts of vomiting. I was throwing up the stuff I've been burping. It was large, bulky foul smelling and it floated.   I've had pain bouts for years like I've described.   It just seems to be coming more frequently instead of every few months it was almost all week  2 really bad days.

I have had at least 8 ER visits or hospitalizations between 25 and 28.   All were for
vomiting related dehydration.   Cause for vomiting unknown.   I think I know now.   I can recall many of the events prior to getting sick and yes food was involved.   I also developed this problem with eggs which still lasts today.   Balls me up and makes me sick like I described so I don't eat them.   I have never been much of a meat eater that I can remember, I have always been a fruit, veggie and Carb person. Yet I always tried to eat a little.   I'm 40, 5' 6 1/2 and currently weigh 119 lbs.  But weighed 134 in early February. I have not enjoyed eating for many years, After 2 or 3 bites of most foods I feel like vomiting.   So I eat almost constantly.   Some foods, if they are not the right texture they do the same thing if it's soggy it won't go down.   Except, when I was pregnant with my kids keeping weight on was an issue.    I had no problem then.   I did have borderline gestation diabetes with Cassie.   Only problem I had with Gary-Michiel was I broke my ankle during the 6th month of pregnancy, hurt my back at the same time, Dr's though it was gall bladder, ultrasound  was normal.   I don't drink and haven't in years.   Only thing that has to do with is responsibility to my kids.   Can't take care of my kids if I'm under the influence Even when I did drink it was tame so that is not an issue I don't think.   I have also had problems with low blood sugar for years. Had 8 hour testing done in 1975.   That's part of the reason I nibble all the time.   Lows seem to be coming more often and more intensely.

Patty Hurst
Bangor, ME



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Peter K.'s Story

IThis is part of my story...
~1~
Discharged after six days in the hospital having been diagnosed with Pancreatitis, I had now been pain free for 36 hours. I was finally able to eat again. Well that was short lived. I had a severe pain attack Friday afternoon and it lasted through Saturday. (I know some might roll their eyes, but this is still so new to me.) I had turned down a Rx for Vicodin at the hospital, (after all I had no pain for 36 hrs and I've had trouble with addiction in the past) But as soon as that pain came back, I was on the phone to the Doc in a minute on Friday afternoon; he prescribed me Vicodin ES. Friday night was filled with lots of anxiety and no sleep. I was scared and depressed.

My spouse, who is my lifeline, was so distraught and overwhelmed from the last week of dealing with the three kids, her job, and parents with Alzheimer's, she was ready to drive me back to the ER. On Saturday morning, however, no doctor is easily available. Well, I recalled that Kimber, the California State Representative, had told me to call if I needed anything. So I went back online and found her contact numbers, waited until 9 AM and gave her a call.

She was an immediate comfort; it was like talking to an old acquaintance. She calmed me down and gave me strength to help me focus on the issues at hand. She shared her experience on: when to go to the ER, how to manage the pain, diet, and activity, how to talk with the doctor, how to calm myself and my family, what to expect, and other things. She was a huge help. We talked for over 45 minutes. She was so knowledgeable. My every question was answered. ("oh yeah, just one more question", I said over and over.)

The pain eventually eased up. I went back to work, for a few hours, the next Monday & Tuesday, but by Wednesday “Pete's pancreas” was striking again. I had excruciating pain and violent vomiting. The Vicodin barely touched the pain. I called the Doctor in the morning.  He started me on the Duragesic Pain Patch and made arrangements for a consult at Cider Sinai in Los Angeles. It worked well. I felt better for the moment, and it's the moment that matters.

~2~
I am now under the care of Dr. Simon Lo at Ciders Sinai in LA, who classifies me currently as having Idiopathic Pancreatitis. Essentially they don't know what's causing it. I'm still struggling with Pancreatitis. The pain & fatigue make it impossible to put together a full week of work.  I am in intense pain three out of four weeks.

The Pain Management consultant at Ciders Sinai continued the Duragesic 100 mg/h Patch of Fentanyl on the bad weeks. He added Actiq 1600 mcg Fentanyl "lollipops' for the breakthrough pain. He treats me with small doses on my good week, so I don't experience the withdrawal that I was experiencing before he was in the picture. Once or twice a month I am unable to manage the pain at home and have to go to the ER to get a shot of Demerol or Dilaudid. The Pain Management Doctor did a Celiac Plexus Splanic Nerve Block on me which he was quite confident about, which unfortunately did not work at all.

I've gone through all my savings. I'm lucky so far as my employers are very understanding. I am receiving a small amount from State Disability which barely covers my utility bills. I have a heroic spouse and three concerned and caring kids (22, 21, and 8). I try to keep my attitude positive and upbeat, but these last two episodes have beaten me up mentally pretty badly. I'm back at work today. I went to the Rose Parade in Pasadena yesterday. I keep on keeping on.

Peter C. Koozera aka Pck
kozypck@earthlink.net



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Crystal G.'s Story

I started having recurrent acute pancreatitis attacks when I was eight or nine. In an attempt to resolve the cause, when I was ten, I had gallbladder surgery. It was not until I was fourteen that I had an ERCP with Manometry. The results indicated Sphincter of Oddi dysfunction. Over the next four years, I only suffered one or two attacks a year.

When I was eighteen, however, an acute pancreatitis attack left me very ill. My enzyme levels remained elevated for the next year and a half. I was in the hospital most of that time.  Eventually, my enzyme levels no longer elevated. I still had all of the other symptoms. The doctors continued treating me, but were suspicious that I was not sick. I had been sick almost half of my life, there was no way for me to have started drinking.

In the end, I moved and had a new doctor.  He tested my trypsin levels and fatty fecal tests. These were consistent with chronic pancreatitis. He also made it a goal to keep my pain under control and keep me comfortable.   Eventually we learned about the Total Pancreatectomy with Islet Cell Transplant at Fairview Medical Center of the University of Minnesota. I had the surgery when I was twenty-one.  

I am now twenty-three. I have not been in the hospital since the surgery and have not had any pain. I am doing very well, although I did end up with diabetes. I cannot remember the exact mount of islet cells transplanted, but whether there were not enough, or if they did not take, I do require supplemental insulin. My doctors hate saying I have diabetes, because I take smaller doses of insulin than babies with diabetes do and my sugars are very well controlled. My HBa1c is 5.0. Anything below seven is good for a diabetic. As for carb counting, I do not do it. I eat whatever I want.

Soon after my surgery, it took a few months before I could eat more than a few bites at a time. One day, I suddenly could eat everything in sight with no hesitation. Since my surgery, I have gained a significant amount of weight. I went from 89 lbs. to 130. I have also grown two inches. 

I just finished another semester of school today. I am a senior with 21 credits left to take. I could take that many credits and graduate this spring in physical education, but the NCAA gave me two more years of eligibility for running so I will take my time and then get my masters in athletic administration.  I will graduate in December 2005 with a Bachelor of Science in physical education and music. I am somewhat upset because I was hoping to graduate with a 4.0, but this past semester I got a B+ in my English class. I am still trying to figure out how I received that grade. I figured that I should receive an A-. Still not a four point, but better than a B+. I have problems with my memory, I am not on pain medications any more, and I know it is from all of the drugs I used to need to keep my pain tolerable. Sorry to tell you it does not improve. 

I also run on my university's XC and track team. The track season begins this weekend with our first meet. However, I will not be participating because I have a stress fracture in my calcaneus. I get out of my cast tomorrow, and in a few more weeks, I should be competing.  In addition to school and track, I clean doctor's offices and other businesses around town twice a week. Its not much money, but it pays well for the amount of hours I actually work.

I am living life like never before. I pray that everyone can have a better quality of life, be fulfilled, and happy.  

Update December 2005
 
I just wanted to share with everyone my good news:  I am now a college graduate.  I graduated with honors with a BS in Sport Science, Physical Education, Recreation and Dance.  It easiest to say PE and everyone knows what that is, but I like to say sport science because it sounds smarter.  Actually, my emphasis is in sport science.  I don't want to teach school.  I have been offered a job as a Developmental Specialist.  I thought this is what I would do for sure, but now my track coach offered me a post graduate scholarship because I have two seasons of NCAA eligiblity left and I keep getting better and better.  I was also offered a grad assistantship where I would have grad school paid for and get a stipend in the Masters program for athletic administration.  A lot of wonderful options are available to me.  These are all great offers, but I am ready to just be done with school and enter the work force full-time.

Love,
Crystal Galloway
golightly18@yahoo.com



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Henry's Story

 Tomorrow is Henry's return trip to the doctor in Durham (3 weeks out of the hospital).  He'll be having a CT scan to see how his pseudo cysts are doing and to find out if he can start eating food again. It will be an all-day trip.

We had an easy trip to Durham and back, but it took all day.  Dr. Pappas said the CT scan showed Henry's pancreas and pseudo cysts are shrinking up to normal.  But I was jumping the gun to think he would start eating solids and go off of tube feeding.  He's supposed to up the speed of the tube feedings and start clear liquids.  Dr. Pappas said that should help him gain weight.  No surgery is anticipated and the doctor was extremely optomistic about him getting back to normal (not that pancreatitis goes away, but it can be managed).  He has another appointment in 4 weeks.

 Ginny



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Jeannine's Story

 March 2003

I was diagnosed with my first Pancreatitis attack in 1994, but knowing what we know now, I firmly believe I had my first attack in 1986. My lipids going out of control seems to be the trigger for me. I was diagnosed with lipid problems while on active duty in the Navy when I was almost 22 yrs. old, I will be 51 next week so I have been dealing with this for a long time.

In 1986 with my miserable belly pain that is all too familiar to us,  they took a ton of blood tests and when my cholesterol/ triglycerides came back as 900+ / 9000+ (YES!!!) they asked me to come back to the hospital, prepared to be admitted for Pancreatitis but to get blood work done. Of course, the lipase and amylase were dead center normal. I know this has happened to others of you from my scanning the archives...so I was sent home and told to get my stress under control. Admittedly, I WAS under a lot of stress. I was caring for a toddler, my husband was out to sea, and I was in college trying to graduate before we transferred so I was carrying 28-30 units. No stress there! :)

Oh and just for grins, I was working part-time to supplement the GI Bill!

I now get most of my care at the VA. They are always out to save a buck or a penny with no regard to the impact on the patient. I am also an employee so I am allowed to run them down but nobody else is! Therefore, when I moved my care to the VA from the civilian world they changed my Pravastatin to Simvastatin saying the drugs were the same.

Well apparently, they are not THAT close as my lipid values started climbing (especially the Triglycerides!) Neither my provider nor I even noticed it until AFTER the Pancreatitis attack. (I have already learned the lingo!) One day my family and I were out having a lovely lazy day at the park when my stomach started hurting and bloating up to a 5-6 months pregnant belly size!

By evening I was hurting in my left shoulder blade, I was having difficulty breathing deeply, I had pain in my neck and arm on the left side so I was convinced I was having a heart attack. I convinced my husband that it was necessary to take me to the hospital. A local facility was much closer than the VA so that is where we went.

When you tell an ER staff you are having chest pains, they really hop. I was whisked in and hooked up to every imaginable piece of equipment and labs were drawn. Inside of a few minutes it was determined I was most likely NOT having a heart attack but we still did not have the complete answer.

They determined I probably did not have Pancreatitis because of the normal levels of the enzymes, we have we all heard THIS before! I was sent home after several hours with a script for Vicodin when nothing else really helped the pain. They asked me to come back in the morning as the ultrasound tech had just gone home.

I came back in as directed, but they noted in my chart that I came in of my own accord! Anyway, they did the US, found a normal gallbladder, but lo and behold, the Pancreatitis was found! In addition, overnight my lab values nearly doubled but they were still normal or slightly over normal, so obviously they are not a good marker for me! My Cholesterol / Triglycerides were 500+/5000+. This is why I am convinced 1986 was my first attack and my primaries agree with me. I was admitted to the hospital. You know the routine. NPO for 72 hours, IV's, then clear liquids, etc., .home on day four day, rest for the rest of the week.

In June 1997, I had another huge attack, which was completely different from the first one except for the characteristic belly pain. I did not go to the ER. Then in Mar of 2000 I had a third and yet DIFFERENT attack. I didn't run fever with the first two (three) attacks, but this one I carried a low grade fever for 3-4 weeks, thought I just had a case of the flu that was being stubborn !

I was beginning to wonder how I was supposed to know when I was having a full-blown attack and get myself to the ER. The belly pain is about the only thing that is consistent. I have had numerous mini-attacks, meaning I am paying close enough attention to the increasing heaviness in my belly that I stop eating soon enough to stop the attack before it gets worse.

II

I am not new to living with chronic illness. I suffer with six separate chronic health issues, four of which involve chronic pain: Fibromyalgia, Arthritis, Migraines, and the Pancreatitis. The other two conditions are Diabetes and Sinusitis, the last one involves some pain but not a significant amount when compared to the others.

Living with chronic pain is no fun! I have chosen to be as upbeat and positive as I can, but chronic pain is very wearing...it drags you down physically AND emotionally and even spiritually. I have been living with constant pain for close to 30 years and I am just 51. As you can see, this is greater than half my life !

I started with a diagnosis of migraines in 1975, though looking back over my life I believe I had the early stages of them as young as 10 years of age in the 5th grade.

I have been in 5 car accidents since the age of 12; in three of the car wrecks I was rear-ended, so I had three whiplash injuries for certain...but may have had them in the other accidents as well, so I always say I have had three to five whiplash injuries. I have also endured fourteen surgeries...and multiple dumb and dumber accidents over the years!

At the age of 35 I was diagnosed with "arthritis advanced for the age of the patient" by the radiologists...I believe they thought I was 15-20 years older based on what they saw in the films.

After ten years of searching for answers as to why I was in such constant body-wide pain I was finally given the diagnosis of "Fibromyalgia" in May of 1993 by my current doctor. What a relief it was to finally have ONE diagnosis! Up until this moment I had been treated as the hypochondriac queen with a page full of diagnoses....now I had just ONE diagnosis, with many components. My euphoria
at having one illness versus twenty was short-lived however, when I was told there was no cure and not very many effective treatments !

I personally was trained to be an LPN. I loved working on the wards with the patients but eventually I had to give up the work. I could no longer bounce back from the rotating shifts like I once could. Then I could no longer stand on my feet all day so I had to give up the work I did in the laboratiory. Then I took a job in the pharmacy but the constant typing led to carpal tunnel syndrome, so I had to
switch jobs again.

This is when I went back to college in my early 30's with an infant at home and a husband out to sea more than he was home. My brain was still working then so I went for a degree in health education. By the time I graduated, my husband was trasferred to another state and this place hadn't heard of Health Education as a field ! I took a job in medical records because it was available and it gave us an
income...as low as it was....I was making 33% less after getting my degree than I was before I opted to go back to school !

My health began deteriorating at a rapid pace over the next 5 years. I had surgery on both hands for the carpal tunnel, then I had a hysterectomy, I slipped a disc in my neck (probably from all those whiplash injuries in the previous 25 years!) and had to have surgery to fix it or eventually become paralyzed...I also developed sinusitis for the first time, then insomnia and then a seizure disorder which has gone away since that time...I was dealing with a lot of health issues in a short period of time. It was after being transferred from the last state we lived in to Washington State in 1992 that more health issues started cropping up leading to my eventual diagnosis of fibromyalgia. Then two years later I was diagnosed with Pancreatitis.

Jeannine (juh-neen) M Martin
Washington
fmmama1993@yahoo.com



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Joey W.'s Story
The last couple of years Joey very rarely had increased enzymes with his pain.   He was home (and hospitalized) on a constant infusion of Demerol - eventually enough to kill an elephant -and was never free from pain.   We tried nerve blocks, epidurals, patches, etc. and when he was having an episode, there was nothing that gave him total relief.   At the end, his episodes were lasting between 6-10 months.   During those times he was unable to eat or drink anything.   He existed on TPN and Demerol.   No one knows why his Pancreatitis was so debilitating.   I think he was the exception rather than the rule.   I believe that Joey's Pancreatitis was autoimmune related.   He had a history of severe food and environmental allergies.   Then the Pancreatitis started when he was five.  Joey also had a fundoplication for reflux when he was a baby.

Dr. Fox has been my son, Joey's, doctor for the last 9 years. Dr. Fox is wonderful about answering emails.  I find it's so much easier to get hold of him than trying to leave phone messages and waiting for him to return a call.  He is also wonderful about keeping up with all the latest information concerning Pancreatitis.  But what is most important to me is that he listens to me and has always trusted my judgment in every situation.

Joey had chronic Pancreatitis for 8 years and has been cured for almost a year now.  He had a Total Pancreatectomy with Islet Cell Transplant done last June which was a Total success. Dr. Lillehei is our surgeon and he is the one who performed Joey's Pancreatectomy and Islet Cell Transplant.   It was the first one he had ever done and there isn't another person I would have rather had do it.   There aren't words to describe the compassion that they have shown us over the years.   Dr. Sethna was on the pain team.   He is truly an angel sent from heaven.    And now that his pancreas is gone, he has developed alopecia universalis.

Of course, the best part is that now he is completely free from pain and is growing and gaining weight and just enjoying life!   We really consider Joey's' surgery a miracle.  Not only is he free from pain, but his blood sugars continue to be perfect.  As far as him looking different -- he has gained about 40 lb. since last summer and has grown more than 3".  We say we can see him growing right before our eyes.  The only problem we have right now is that he developed alopecia right after his surgery.  It started out as small patches and all of a sudden it all fell out.  He has no hair at all on his head or body.  Even his eyelashes have fallen out.

We are hoping that eventually it will grow back.  But, Joey couldn't care less.  I think he is so thrilled to actually feel good that there isn't much that could bother him.  He is finishing his first full year of school (7th grade) and he will probably make the honor roll this marking period!  We just couldn't be happier!

Suzanne Wool for son, Joey
wools5@juno.com



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Kathy's Story

I am a fifty two year old women. I have had pancreatitis ten times. Some due to
the ERCP. but mostly, because there is no explanation.

It started about seven years ago. I had several bouts of it and I  went from Dr to Dr and hospital to hospital. Finally I went to Buffalo, NY to a Dr Fay, who did an ERCP and found out I had stones in my bio duct. (I already had my gallbladder out nine years before and had problems ever since) Anyway this time I went to him again and he could find no reason. He opened the bio duct more and clipped the spinkter more as he had done the same last time. He said there is nothing more he can do for me.

I was sent back home with pancreatitis from the procedure, even though I told the nurse I was sick. I had one more bout since then. This was in August of 2002.  I have been told I need to experiment. I take enzymes for all meals and pray every day I do not have another bout of it.  I am at my wits end. No one here knows much about it and I feel helpless. I do not want to die with this without trying to cure it. I am on a low fat diet and I try to stick to it, but I sometimes think it is stress.

Also before I forget I am not diabetic nor do I drink. My Grandmother died of pancreatic cancer. I know it is not cancer, but I read where it can lead to cancer.

Kathy Willover
Portville, New York



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Karen W's Story

Date: 11/15/02
I weighed 159 this afternoon.   I've lost 101 lbs.  This is 3 lb. below my original goal.
I had lost to 161 two weeks ago but my weight was fluctuating from 163-165 because of fluid retention from the IVs.   I just weighed 162 yesterday and figured the fluid was coming off from last hospital stay.   Now today, I'm down 3 lb. from yesterday.   Mind you, I am not too skinny at 159.   At 5'9", that puts my BMI at 23.5.   However, I don't want to lose another pound.   If not for being so sick from the Pancreatitis the last few months (which has nothing to do with the gastric bypass for you newbies) I'd probably be happy to be below 160.   I had kind of thought 160 would be nice to say I'd lost 100 lbs.  However, I can't even be happy now since my PCP is so concerned about my nutritional status.   I've really been doing better on my eating since the last hospital stay a week ago.

~~
Date: 11/19/02
I saw my pcp today.   I had sent him an e-mail about my weight and my blood sugar going wacky again.   I told him I wanted him to tell me I was just being silly for being concerned about my recent weight loss.   He wanted me to come in, so I did.   He told me that he was very concerned about my weight and he does not want me to lose any more weight at all.   He said the only thing he knew to tell me was that I have got to eat more often and consume more calories.

He said he still feels the blood sugar problems are just a result of my poor nutritional status and all the assaults my body has had.   He feels that once they do the surgery and stop me from having the episodes of pain, nausea, and vomiting, which often cause me to have to go days at a time with little or no nourishment, my blood sugar will return to normal.   For now, I am just to monitor it several times daily.   I have decided that I am going to see the nutritionist my sister has worked with off and on for several years.   He has worked with Dr. Champion in Atlanta, who does the gastric bypass, so he knows the changes entailed with the gastric bypass.   I feel he can give me the most sound nutritional advice on how I can keep from losing any more weight and keep my sugar under control.
~~~

Date: 11/29/02
Just wanted to share a praise with you.   I have had some very good days lately.   I was able to work Monday - Wednesday of this week.   I believe this is the first time I've worked 3 days in a row since I got sick in July.   I was also able to enjoy a nice meal on Thanksgiving with no problems.   I've also managed to stay out of the hospital for 3 weeks now.   That may be the longest I've accomplished that since July, also.

I will see a surgeon in Birmingham on Wednesday.   The plan is that I will have surgery to remove the adhesions (or whatever it may be) that are blocking the bile duct. I saw a nutritionist, Dr. Ralph Carson, on Tuesday.   He reviewed my labs and bouncing blood sugars and said that he agrees with my stomach doctor's assessment of the problem.   He explained that the pancreas is most likely not functioning properly because the flow of the bile duct is being obstructed.   He said this is keeping the pancreas from doing it's job of regulating insulin.   He does not believe I am a diabetic, but for now I am to treat it as if I am a diabetic.   He believes that once I have surgery and the obstruction is removed, my pancreas will once again function normally and my blood sugar will return to normal.   I am to eat small meals six times a day for now with an appropriate balance of protein, carbohydrates, and fat.   I was already eating approximately six times a day as Dr. Boone had instructed me to do that.   However, the nutritionist gave me the numbers that I need to stick to for the balance.   Since I am such a numbers person, I feel more in control by knowing where I need to be.   He also told me that ideally my blood sugar should always be in the 90-120 range, but never lower than 70 or higher than 140.

I am proceeding with my application for disability retirement.   I believe this is the right thing to do at this time.   I do believe that God has a plan for me and that different doors will open when He feels it is right for me.
~~
Date: 12/5/02
   I had my app. with Dr. Kitchens, the surgeon Dr. Sigman (my GI) referred me to, today.   He is going to do surgery on Monday, Dec 9th, to repair the hernia that is right about where my left ovary used to be.   He'll also look for adhesions in the area of the bile duct and pancreas.   He said he believes it is unlikely that there are adhesions severe enough to cause actual Pancreatitis but he will look and will remove any adhesions he finds.   As soon as he felt the hernia, he said it could be the source of most of my problems.   He said if it is bad enough that I have to push it back in to have a bowel movement, it could absolutely cause all sorts of problems and pain in other areas.       He said while the hernia could be responsible for the pain even though the pain is in the RUQ of the abdomen and the hernia is in the lower left area, that he really has no explanation for the elevation of liver and pancreas enzymes.   He said that all potential causes of Pancreatitis should be eliminated just on the off chance that they are the cause.   He said the first thing would have been to remove my gallbladder, but, of course, it is already gone.   The next thing would be to tell me to never drink alcohol again, but I don't drink or not enough to cause a problem.   Next, he would monitor my Tryglycerides on a regular basis.   (they were elevated to the 600 range back in 2000.   They've only been checked once since my weight loss surgery and they were 135.   They haven't been checked since my latest rounds of Pancreatitis)  He said he has seen cases of acute Pancreatitis caused by Tryglycerides that are elevated only moderately.   He said he would also eliminate any medication which could cause Pancreatitis.   He said that he would recommend that I not take Maxzide or anything with HCTZ for my blood pressure.   I told him that my main problem is more fluid retention than hypertension.   He said Lasix would be safer than HCTZ in someone with a history of Pancreatitis.
    He believes the hernia is an incisional, not inguinal, hernia.   He said he won't know for sure until he gets in there.   He said if it is incisional, the surgery is done a little differently and normally causes a good deal more pain than with an inguinal hernia repair.   He will most likely keep me overnight unless the hernia ends up being inguinal and I want to go home that day.   He is going to check my Tryglycerides on the day of surgery just on the off chance that they are elevated.
    I ended up in the ER last night.   I began having an episode right before we got home from Birmingham, around 5 p.m. It never really let up despite the lortab.   At 1:00 a.m., it began getting much worse and the nausea was horrible.   I drove myself to the ER.   It's only 5 minutes from here and I didn't want to wake my husband.   I figured I'd have them call him when I knew something.   I figured if they decided they wanted to admit me, I'd have my hubby take me to the hospital in Birmingham.   My amylase was normal but my liver enzymes were moderately elevated.   They gave me a shot of Demerol and Phenergan and told me to be sure to follow up today with my PCP or the surgeon in Birmingham.   We left my car at the hospital, but I'll get it later.   We got home about 5 this morning.   I threw up right after we got home but then was able to sleep about 5 hours.   I'm still feeling rough but the pain is much better.
    My PCP just called and said he was going to call in Lasix for me to just take as needed for the fluid retention.   He said it did make sense to stop the Maxzide and stay away from HCTZ.  He said to make sure I come by and get a copy of the labs to bring with me on Monday.
    I don't really know what the deal is with the fluid.   My hands were so swollen this morning that I had to run them under cold water to get my rings off.   This was despite having had 20 mg of Lasix about an hour ago.   This is really frustrating because at times my rings are so loose that I have to take them off to type cause they flop all around.   However, I can't have them sized any smaller because they'd cut off the circulation at times when I'm having a lot of fluid retention.   They used to blame my fluid retention on being overweight.   They can't blame it on that now, so they just say they don't know what's causing it!   I am up 4 lb. in the last few days.   I'm sure it's just fluid because my skin feels so tight.   My stomach is also really bloated.

~~~
Date: 12/11/02
  I had surgery on Monday and just got home this afternoon.   The surgery went well, but I ended up having two hernias instead of just one.   One was a large incisional hernia.   That was the one that was bulging out.   The other was an inguinal hernia.   The surgeon found no adhesions around the bile duct or pancreas.   However, he believes that the incisional hernia could have been causing many of my problems.   We won't know for sure until a few weeks goes by with no episodes of pain, nausea, vomiting, elevated panc/liver enzymes.   The surgeon had told me that if the hernia was incisional (and not inguinal) that the surgery was a great deal more painful.   He was not kidding!   I was expecting pain along the lines of my gastric bypass.   After all, how painful can laparscopic surgery be?   Hah!  I'm hear to tell you it can be quite painful.   It has been every bit as painful if not more than my abdominal hysterectomy I had back in 93.   Moving is pretty much torture.   getting out of be or back into bed is quite difficult and painful!   I am not to lift anything over 5 lb. until I see the surgeon in two weeks.   He also said I can't go back to work until after I see him either.   He said he'll decide when he sees me how much longer my activities will be restricted.   My lower left belly looks a good 5 months pregnant, but it's a lopsided pregnancy!   I gained 10 lb. in the 3 days in the hospital.   I'm sure it's just fluid, but I sure won't be wearing anything but loose fitting sweat pants and such for the next few weeks.

My GI doc came to see me each day I was in the hospital.   He told me he has no answers for me but that he is going to keep digging until he determines what is going on with me.   He's got me scheduled to do an ERCP to remove the stent from the bile duct and to do a liver biopsy on DEC 27th.   My hospital experience was wonderful, as it always is at Baptist Medical Center Montclair in Birmingham, AL.   The nurses are the greatest.

Surprisingly, I had almost no nausea at all with this surgery. I was able to eat without it causing pain or nausea, also
~~~

Date: 12/12/02
It is wonderful to know that I have so many awesome online friends in addition to my family and other friends.   Today has been a rather rough day.   I'm at that point where I'm having the kind of bad burning pain around some of the incisions.   Ice is definitely my friend today!   This is day 3 post-op and I've often heard the 3rd day is the worst.   Hopefully tomorrow will be better.   On a good note, I have had no nausea at all today.   I've been able to eat well with no problems.   I do think the burning pain is a good sign as I believe that means the surgical sites are healing.   I don't know if this will be the end of pancreas/liver enzyme problems but I'm taking each day as a good sign.

June 3, 2003

I had an attack of acute pancreatitis on Thursday night (after feeling great for 3 days).  It started about 10 p.m. and when it wasn't better by 3:30 AM, I had my mom take me to the ER.  At 8:00 PM that night I had talked to my mom and told her that from now on I was going to go the ER in the next town because our little hospital cannot check one of the pancreas enzymes (Lipase) in house, so they just never check it.  They only check the amylase, which is another pancreas enzyme.   With the last several episodes of my typical RUQ abdominal pain, nausea, and vomiting, my liver enzymes have been getting higher.  My amylase has been normal, but on the two occasions that I went to the larger hospital in the next town, my lipase was slightly elevated.  I had a theory that for some reason, my lipase was elevating during the attacks even though amylase was normal.  Only way to test that theory was to go to a hospital where they can check the lipase during an attack.  Didn't know I'd get to test my theory in just a few hours!

Well, it seems my theory was right!  My mom took me to the ER in Huntsville (about 30 miles away).  Ended up my liver enzymes were 726 and 368 (forgot which was which and don't have copies yet).  Amylase was smack in the middle of normal but lipase was 514 (almost double what it should be). High enough to lock me up from early Friday morning until today (Monday)!  My only doctor in Huntsville is my internal medicine doctor so I was admitted under him.  He told me that the episode was absolutely acute pancreatitis as lipase is over 99% specific for pancreatitis.  He said the episode was absolutely not caused by the AIH and that I DO have two separate things going on - AIH and pancreatitis.  He told me that it is not at all uncommon to have a normal amylase and elevated lipase and that it is essential to check both when pancreatitis is suspected.  He was not happy to find that my local hospital never checks the lipase.  He told me that even though it is harder on my family to go to the next town, that I absolutely must go where the lipase can be checked during the episodes.

The doc pumped me full of solumedrol while in the hospital.  He had them giving me 60 mg IV three times a day.  I looked up the comparison dose of solumedrol vs prednisone and it showed it the same.  If that's right, he was giving me the equivalent of 180 mg of prednisone a day!  No wonder I was a total emotional basket case today!  I thought I was going to have to be committed!  It was awful, I was a wreck!  I have never been so emotional in my life.  I didn't do bad on the fluid retention until this afternoon.  I squatted down to pick something up and my skin was so tight I thought it would split open!  The doc also had me on lovenox (a blood thinner) in addition to the coumadin I'm already taking.  Guess he wanted to be extra sure I didn't get a blood clot!  I am bruised from head to toe.  Most are from scratching since I seem to be itchy all the time lately.

I asked the doc today if he thinks I have Chronic Pancreatitis.  He said that he couldn't say for sure at this point.  However, in his admitting history and physical, he says "The patient is a 42-year-old female with history of Chronic Pancreatitis."

This was the first time I've been admitted to  this hospital.  I've been to the ER several times and everyone has been wonderful.  Thursday night I told the ER doctor that my pain began at 10:00 p.m. and I took oxycodone at 10:30 p.m.  I threw up at about 11:30 p.m. and used a phenergan suppository.  I didn't have anything else by mouth after that because I didn't think I'd be able to keep it down and it was obvious the oral meds weren't going to touch the pain.  The doctor walked in the room and says, "I can't believe you're in this much pain, but didn't take another pain pill at home.  Did you just not have any more pain medicine at home?"  I told him I had plenty of oral meds since my pain doc prescribes oxycodone, but that when the pain gets severe, oral meds won't really help.  He then asks why I'm seeing a pain doc and why I need the pain meds.  I told him that I have autoimmune liver disease, lupus, and recurrent acute pancreatitis.  He then asked me why I had those illnesses.  Like I know!  He says he'll get labs and walks out.  After about 10 minutes I sent my mom to ask if I could please have something for pain and nausea.  He said no, he wanted to see what was wrong with me first!  Labs came back pretty quick and as soon as he saw the numbers, he had the nurse in there giving me morphine and phenergan.  By then it was shift change and another doc (very kind and compassionate) comes in and tells me I have acute panc and need to be admitted.  He called my internal med doctor.  My doctor was at the ER just a few minutes after they notified him.

~~
Date:  Wed Jun 11, 2003
I know my sweet hubby, Bud, sent you all an e-mail telling you I was back in the hospital. I went to the ER around 3 a.m. on Friday morning, May 30th. Liver enzymes were in the 700s, Lipase was about 514, but my amylase was normal. It seems the theory I had come up with on Thursday evening just a couple of hours before the attack started, was most likely correct. I thought that maybe my lipase was elevated despite a normal amylase, but since the lipase can't be done in house, they don't ever check it at my local hospital.  I was admitted under the care of my internal med doc, Dr. Wyatt, in Huntsville (about 30 miles from home) with acute Pancreatitis on Friday, May 30th. Dr. Wyatt said I was definitely having an attack of acute Pancreatitis and he was not happy to find out that they don't ever check my lipase at my local hospital in Athens. He said it is VERY common to have acute Pancreatitis with a normal amylase and an elevated lipase.

I was discharged on Monday, Jun 2nd, after begging the doctor to let me go home. I got home Monday and in my hubby's words - I hit the door running and didn't stop until I ended up back in the ER. I actually felt pretty good on Monday and Tuesday. Nikki was in town and we had appointments with wedding vendors all day Tuesday. We booked the florist and photographer so Tuesday was a productive day. However, I was absolutely exhausted by Tuesday afternoon. I didn't eat much Tuesday because I really just had no appetite. Around 10 or 11 p.m., I started having the severe RUQ abdominal pain, nausea, and vomiting so we were off to the ER again. this time my amylase was again totally normal.  Lipase was higher this time. I was admitted again early Wed, Jun 4th, under Dr. Wyatt's care.  Liver enzymes were elevated -- didn't ask for the numbers, but will get copies in a few days.  Dr. Wyatt called in a GI, Dr. Goetsch, and I really think I am finally in good hands. This time it took longer than usual for my liver enzymes and lipase to start coming down. I finally got to come home this afternoon. I've spent about 11 of the last 13 days in the hospital, but if Dr. Goetsch is as good as he seems to be, the recent attacks may just be a blessing. He told my hubby and I that he finds the liver and pancreas to be the most interesting part of the digestive system, and that he devotes much of his practice to dealing with liver and pancreas problems. He said that he has no problem dealing with my liver, pancreas, and any other GI problems that are going on with me.

They did a CT scan of my abdomen since the last one was done in September of last year. Until this most recent episode, nothing ever showed on films. This time the CT scan showed edema and signs of chronic panc. Dr. Goetsch had them give me three doses of sandostatin. I'm not really sure why just three doses.  Maybe someone in one of my panc groups can explain it to me. He also started me on Actigall (Urso) twice a day. He gave me a prescription for pancreas enzyme - pangestyme. I'm supposed to take two with all meals and snacks.  Dr. Goetsch said that he is positive that my episodes of horrendous RUQ abdominal pain, nausea, and vomiting are being caused by my pancreas and not my liver. I think that's the same pancreas that my previous GI has insisted is perfectly normal throughout the last 11 months. I asked my new GI if I have chronic Pancreatitis or still just recurrent acute Pancreatitis. He said I have 'relapsing chronic Pancreatitis'. I haven't ever heard it referred to as 'relapsing chronic Pancreatitis', but it seems it is now official that I have chronic Pancreatitis. I will see my new GI in two weeks.  At that time, he will most likely add Imuran and begin slowly tapering down my Prednisone. I tried to get him to start me on Imuran or another immuno suppressant now but he said he needs to give my pancreas a couple of weeks before we add the Imuran. His goal will be to get me on the lowest dose of Prednisone and/or Imuran that will keep my liver enzymes at or near normal.

Karen W
karenw@pclnet.net



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Kelly T.'s Story

11/11/1999.

I'm a 32 year old woman that got diagnosed with pancreatitis about two months ago.I had been having strange, and severe, pains in my left side.  I started going to doctors in June and was diagnosed with everything from an ulcer to pleurasy (sp).

Finally, I was referred to a gastro guy who diagnosed pancreatitis.  It's a relief to know what I actually have, but I'm having a little trouble with the stigma that's related to it.  I didn't have gallstones so I must be an alcoholic, right?  Of course,it doesn't help that I did drink some (wine only)probably more than I should but not to the point that I thought I could get this sick!  Oh well, I guess the stigma is really the least of my troubles.

I've had two ERCPs in the last five weeks.I have a cyst in the tail of my panc and a lot of inflammation, too.  The cyst ruptured and leaked a lot (formed a 5x15cm cyst) out into my peritoneal cavity.  I had a stent put in during the first ERCP.  They tried to take it out during the second ERCP but had to put it back in because the duct was still leaking.  I guess that means I'll have a third ERCP in a month or so...  After the first ERCP, I started running a very high fever and dropped a lot of weight.    The fever is gone now but the antibiotics I was on made me SICK, SICK, SICK!  I couldn't eat at all while taking them. The doc talked about putting a catheter (sp) in my neck to feed me for 1-3 months, but thankfully I've begun eating again with no problems.  I think I've dodged that bullet for now!  WHEW!

Kelly Thrasher
Thrasher@aol.com



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Kerri B.'s Story

Sat May 31, 2003

I am new to this site, and pretty much the web in general. I am not new to Pancreatitis. My name is Keri. I am from Central Illinois. My first attack was around age 10, from then to age 21 I had an attack every six months to a year. Then I got pregnant and became much more frequently ill. I am now 26 and I have pain, nausea, and vomiting on an almost daily basis. I have a husband who is very supportive, despite the tremendous responsibility and stress the whole situation puts on him. I have to be hospitalized about once every 4-6 weeks. We often joke about him being the only married single father we know. My two girls 3 1/2 and 19 months both came through my horrid pregnancies completely healthy.

I also have Chronic Recurrent Idiopathic Pancreatitis. I have been through every test there is, always with no results as to the cause of my problems. Sometimes I think it is most frustrating not to know why it is happening. Virtually anything can bring on an attack, lack of sleep, stress (good or bad), eating the wrong thing, numerous medications, and hormones.

I have intense gas pressure and pain in the loop of bowel over the pancreas. This started after my first celiac block. It also caused terrible diarrhea that causes my electrolytes to often be off balance and I frequently require potassium supplementation. The celiac block did nothing for my pain. This gas pressure if not relieved quickly, causes increased pancreas pain, I believe just because of the physical pressure it exerts on the pancreas.

I am currently undergoing treatment with depot-lupron, which shuts down the female reproductive system, simulating menopause. We started this after noticing a strong connection between fluctuations in my menstrual cycle with attacks. If the therapy serves to decrease the frequency or intensity of my attacks, I plan on having a partial hysterectomy.

Both of my pregnancies were long and difficult. But, they were DEFINITELY WORTH EVERY MINUTE. Pregnancy with CP is possible. I would warn anyone facing the option, to be prepared. Because during pregnancy your hormone levels skyrocket, it can complicate your difficulties with CP. I had increased intensity and frequency of pain. I was on TPN throughout much of both pregnancies. I was also on a lot of pain meds from Darvocet and Lorcet, to Demerol and Morphine IVs. However because of advances in Fetal Medicine, my babies were monitored closely throughout my pregnancies and were born only 5, and 4 weeks early respectively; entirely healthy. There early deliveries were due to my health, not theirs. I had a Maternal-Fetal Medicine Specialist to work in conjunction with my GI. I was never able to get any answers on what to expect from a pregnancy prior to getting pregnant. But because The Pill and Depot-Provera both irritated my CP, I was left with few reliable means of contraception. So, with this being the case, both of my girls were "unplanned" but welcomed. I had a Tubal Ligation with my second C-section.

I am ecstatic to find a place where I can talk with someone who is dealing with similar problems. My frustrations with the disease are numerous, and it helps to know that I am not alone. The last few years my attacks have been accompanied by the same outward symptoms, however my amylase and lipase levels have overtime decreased to almost normal with attacks. My doctor says this is because my
pancreas has been damaged to the point it can no longer put out the increased levels of enzymes. This has made my admissions through the emergency room with physicians I don't know complicated. I am sure you all realize most doctors who don't specialize know even less about Pancreatitis than those of us who live with it.

Keri Beck, RN
jandcsmomma@yahoo.com



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Nancy's Story

My name is Nancy Templin.  My problems started 3 years ago. Severe pain, doubling over, etc., etc. Two years ago, I had my gallbladder removed. I got no relief all after this. After seeing my GI doctor multiple times and being told I most likely had Sphincter of Oddi dysfunction (but he didn't want me to have an ERCP to find out for sure because of the risk of Pancreatitis) I finally insisted because I couldn't handle the pain and sickness anymore (I am 33 years old with 2 boys aged 4 and 6)!

I was sent to Indiana University Medical Center to the ERCP specialty center where I had my first ERCP. My common bile duct pressure was 80 (should be less than 40) and my pancreatic duct pressure was 120. I had two Sphincterotomies and stents placed. I finally had experienced some relief, but within six weeks the pain returned and I subsequently began a series of ERCPs as well as hospitalizations.  I had major surgery (5 hours) on August 1, 2002, to supposedly cure my SOD. My surgeon was a pancreatic surgeon who previously worked with Dr. Sutherland!  When I first met with her she spent 1 1/2 hours with my husband and I going over my options, which included a Sphincteroplasty and ductoplasty of my pancreatic duct or a Whipple!!!!! I am now so upset and don't understand why she would have done a Whipple on me when she said that I did not have CP because "your amylase and lipase are not elevated." However, when I had my ERCP three months prior at IU my diagnosis was "equivocal chronic Pancreatitis."  I guess I should be thankful that she didn't do the Whipple, but I fell like I had surgery for nothing and could have ended up in really bad shape.

On 6/25/02, my CT scan states, "subcapsular 1.5 cm cyst at the ventral superior
aspect of the spleen." "There is a subcentimeter nodule in the right adrenal gland." "There is a 2 cm ovarian cyst." "There is a 5-6 mm rounded region within the right adrenal gland medial limb." "There is a 1 cm anterior upper splenic cyst present." "The soft tissues demonstrate NEW onset of subcutaneous edema in the right periumbilical and flank subcutaneous tissues."

Conclusion: Mild subcutaneous edema in the periumbilical and right flank
subcutaneous tissues anteriorly. Small probable adenoma of the right adrenal
gland. Cyst of pseudocyst of the upper spleen anteriorly. Probable anterior uterine fibroid measuring 1.7 cm in diameter.

I had another ERCP after that CT scan on November 4, 2002, for which I was
hospitalized for three days with acute Pancreatitis. Another CT was done at that time and these things are what I am concerned about. My doctor never really said anything about it.

This is all quoted from my report: There is a small amount of fluid in the gallbladder fossa. There is mild edema of the inferior portion of the pancreatic head. In the soft tissues surrounding the pancreatic head, there is stranding of the adjacent fat. There is a small amount of fluid within the right perinephric and posterior pararenal spaces. This fluid may be related to the adjacent inflammation seen in the pancreatic head indicating Pancreatitis. The fluid surrounding the right kidney could originate from the right kidney such as from a prior urinary tract infection or stone disease.

Impression: There are fluid collections and there is edema surrounding the pancreatic head and extending into the right perinephritic and posterior pararenal spaces and into the gallbladder fossa. These findings suggest acute Pancreatitis with peripancreatic fluid collections. Small collections of air in the region of the common bile duct.

My ERCP report from November 4, 2002: The main pancreatic duct appears slightly dilated. There appears to be relatively abrupt termination of the distal pancreatic duct in the pancreatic tail area and the possibility of a small stone or other obstructing lesion in this area. There is moderate filling of the secondary and tertiary biliary ducts within the pancreas which is somewhat unusual and may be a reflection of Pancreatitis. There appear to be several small filling defects within the pancreatic ductal system in the head of the pancreas which may represent small stones or possibly small air bubbles. The common bile duct and common hepatic duct have mildly dilated appearances. There is a rounded filling defect within the distal common duct on several films. Clinical correlation regarding this finding is necessary.

I am lost. Along with SOD and CP I also have a loop in my pancreatic duct, which is congenital. I have very high Tryglycerides and low thyroid. I also have a family history of Pancreatitis in my grandfather, but he was an alcoholic.

My prayers are with everyone with this horrible disease.

Nancy Templin



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Paget's Story

5/13/2003
I am finally acting like my old self. That is the person that can run around with happiness and energy in me. Today, I'm not feeling as well as I had been, but my spirits are up because I know this Dr. has the skills to keep me well. I just went out on the limb. The  great Dr.'S name is Dr. Haluszka. He is going to leave them in for as long as possible. As long as they are draining, then I get to keep them. If they get clogged I am not sure what will happen. I know he will take them out, and maybe put them back in with another ERCP. The other thing that I would like to say is, in the past, an  ERCP meant to me a long stay in the hospital in pain and misery. Both of my procedures with DR. Haluszka my pancreatic attacks were almost none. I hope and pray for others that they get an experience like mine.

I do get just a bit ahead of myself and then have to deal with trying to put an angry sleeping pancreas back to sleep. I know that if I can't get him back to sleep, I know that help is not far away. That is so nice about DR. Haluszka, he responds to you ASAP. He is at Fox Case Cancer Center in Philadelphia. He treats all patients, including those without cancer. For Fox Chase to lure him, he wanted to be able to treat all pancreas people, and that Fox Chase get the state of the art equipment. Fox Chase has been true to their word, and he is using his fantastic skills. Also, Fox Chase is a fantastic Hospital. The after care such as the nurses and other parts of the team is wonderful. They help you with your head as you get treated for your disease. The pain group are excellent.

5/18/2003
I was so excited that I felt that my Pancreatitis was far behind me. I was wrong! I did way too much and had a large flare up. It has taken me 5 days to recover. I have learned that I need to rest a great deal and do little things around town, rather than running around like the Energizer Bunny. I have also learned that my actions are very self centered when I run around and get sick, because everyone around me that loves me is affected. My children, the most, because then I can't go to their school plays and songs.

It is going to be hard for me to make this change. I loved living in the world of denial.   My Chronic Pancreatitis is here to stay, it's just now I have to learn how to live inside it's boundaries. I know I can do it. All I have to do is think about the pain and nausea that I have endured this week and it puts me back to thinking things out. Dr. Haluszka did a wonderful job to relieve my symptoms, but he didn't cure me. I guess I felt so good that I thought he had cured me. Deep down inside me I have always been looking for a cure, I was determined that I was not going to live like this for the rest of my life. If I eat what I am supposed to eat and rest when my body is tired I can live a very nice, hopefully, pain free life. It feels good to be able to write and know that someone out there may have done the same thing. Maybe they too had taken a long time to figure this out.

Update: August 2004

Last summer I had the Whipple surgery. Since that time I have been on a PCA pump that follows me everywhere giving me Dilaudid. As it turns out, I have autoimmune CP, minus 1/3rd of my pancreas. This summer my colon gave out and quit working. Surgery was required to remove most of my colon, small intestine, and my poop shoot, as I call it.

After listening to everyone tell me they would take care of me, my pain and nausea, the doctor refused to advance the narcotics. The pain was out of this world. The doctor made comments such as I was obsessed with Dilaudid, and any other medication I needed to get some relief. Phenergan, which I use frequently, and also helps with pain, was also added to the list of obsessions for medicine. I needed to get out of that hospital so fast; I went home with home health care.

I just pray that the nursing group knows what they are doing and are taking good care of me. I don't think this doctor wants to treat me if I end up having an infection. I have never been so scared because the pancreas was on fire, and my stomach was in so much pain. The doctor sent me home without any antibiotics. I thought that was a bit strange. I just pray I am able to heal, my colostomy closes perfectly, and I can go on with my life.

Before this operation my quality of life was very poor. But, right now, I am very scared!

Paget
Pag4024@aol.com
Pennsylvania

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Rachel's Story

It is so amazing to see all these people out there are experiencing the same things that I've been going through.   I suppose everyone feels that way at first.   I have just felt so alone and abandoned by much of the health care community who I was led to believe were the people most caring and compassionate toward their patients.   Another myth?   I don't mean to sound bitter.

I have been going through my problems for the last seven years or so with Insulin Dependent Diabetes Mellitus and Chronic Pancreatitis.   It is so much to have to deal with: #1 - the pain and nausea of CP itself, #2 - the misery of having what is stigmatized as an alcoholic's disease and looked on as self-inflicted in a way, whether the person's CP was actually caused by alcohol abuse or not, and #3 -- being treated like a drug addict ever in search of drugs. (I can definitely relate to what everyone said about being treated like a drug addict every time they visited the ER.   Me too.)  After years of trying various pain medications on me, the physician I used to have started me on Methadone for pain control.   In my case it works better for me than any others I tried.   Nothing actually takes away the pain, but if it's strong enough it can make me care less about the pain.   It's unfortunate that it has to affect my mind too, but at this point I think it's worth it if it helps me deal with the constant pain.   When people hear I'm on Methadone I'm instantly labeled as a drug addict.   It may as well be heroin.   Even pharmacists when I fill my prescription, or some nurses in the hospitals, which I found surprising until I stopped to think that everyone in every profession is human, after all, and there are some in every walk of life who judge where they shouldn't.   I've also run into nurses who were really understanding angels on earth, you know, but when I'm in a mood like this the bad ones seem to stick out more in my memory.

I had another ERCP and stent placement done on the 15th of this month after having and EUS done on the 2nd.   They are planning to do another ERCP in about 2 weeks.   Since the ERCP on the 15th I have been very sick.   I mean, even compared to my normal sick with CP state, since that procedure I've been very nauseated, vomiting, incredible abdominal pain, etcetera.  I thought maybe the stent placement isn't right or something.   When they went in they found a stent that had been put in almost six years ago when I had an ERCP done.   I had no idea it was there.   No one had told me.   So this surgeon had a little surprise when he found that.   He removed it and placed a larger one.

Part of my problem is that I recently moved to a new area and needed to find a new doctor.   I have had a horrible time with finances.   It's a long story, and maybe familiar to a lot of you, but the shortened version is: I worked as long as I could after I started having Pancreatitis attacks.   I was hospitalized about 30 or so times, sometimes for over a month at a time, but average a week or two.   I had a great job, and one of my benefits as head of my department was free medical insurance.   After becoming ill I discovered that the insurance was worthless.   The company I worked for owned their own insurance company and after "processing" claims forever, they would end up just denying all the claims.   By the time I found out, of course I could never get a different insurance carrier since I was then diagnosed with a "preexisting" illness.   I worked as long as I could, and eventually ended up on SSDI.   I didn't realize that after getting approved for SSDI that I would have a two-year waiting period before my Medicare started.   I was unable to get any kind of insurance for 2 more years.   I started suffering through my bad episodes at home and quit going to the hospital.   I basically went without hardly any medical help until my Medicare began.   I knew a nice doctor who would hydrate me with IV's in the back room of a clinic when I got too dehydrated so I wouldn't have to go to the hospital.   (He was a rare find.)  Now I moved, so I started searching for a new physician.   I have a lot of serious problems going on, some related to the IDDM or CP.   I have terrible edema in my lower extremities, partially blocked arteries, neuropathy, lesions on my feet and legs.   I'm scared of losing my feet to Diabetes.   I am in terrible control of my blood sugars.   I am Insulin Resistant, so I take over 400 units a day and still run from 250 - 500 all the time.   This has been going on for years now, so I worry about all the irreparable damage being done.    Also, I had bilateral arthroscopies done on my knees last year.   I have chrondomalacia and pseudo-gout in my knees and the backs of my kneecaps get soft and have to be shaved down.   The orthopedic surgeon said six months ago that they needed to be done again then.   They are very painful all the time now.   They planned to do them once more, then eventually I'll need the whole knee replacements done.   I'm sure some of you can relate to the stomach acid eating the enamel off your teeth from all the vomiting.   I'm told that's what happened to my teeth.   I've had most all of them pulled and had an upper plate made.   Now I have only a handful of teeth left on the bottom and they need to be extracted.   They are falling apart and very painful all the time now.   But it's so expensive to have the dental work done with no insurance.   Of course having my teeth like this just adds fuel to the fire for those accusing me of being a drug addict on Methadone!

Anyway, I'm just saying that I've got a bunch of stuff going on.   I needed to find a PCP to get the ball rolling and refer me to whoever for whatever.   I started calling around in my new town and the doctors who would accept new patients flat refused to take on someone with my kind of problems.   They said they couldn't take on "a case like yours."  It was as if they only wanted patients who weren't too sick.   The more you needed a doctor,   the harder it was to get one.   Well, I finally found one doctor who specializes in internal medicine.   I was very happy to have gotten him, as I was nearly through the phonebook without success.

My new doctor began sending me to various specialists for my various problems.   So far so good.   But then at one point he told me that he wasn't sure I even had Pancreatitis.   I had brought him a load of medical records when I started with him just to show him that I was telling the truth about my medications, diagnoses, symptoms, tests, etcetera.  But come to find out he was one of those doctors who can't imagine Pancreatitis without elevated Amylase and Lipase levels.   I explained to him that my levels used to be elevated during every episode, even showed him lab records to prove that.   My triglycerides used to be over 4,000.   Everything would be out of whack.   My CP is caused by a hereditary condition of Hypertriglyceridemia.   I even brought all that information documented by my old gastroenterologist.   I told him how it was explained to me that after numerous episodes of acute Pancreatitis where the pancreas was enlarged and the levels were elevated, the scar tissue built on the pancreas and now it is always enlarged, always painful, the levels don't raise now, it had become Chronic Pancreatitis.   The surgeon who did my ERCP said of course that it's CP and told me what I'd heard before.   But this surgeon and hospital where I had those procedures are in a large city a few hours away.

It's obvious that my new PCP doesn't understand CP and the pain that goes with it.   He's not thrilled with my use of Methadone.   He won't give me any information.   He won't answer any questions about upcoming procedures or my condition.   He just talks in circles.   And he won't tell me anything about my test results; I have to send releases to the hospitals to get copies of the tests and surgery reports or else I wouldn't have any idea how they come out.   I have found very different findings in the reports than what little he'd told me.   I would love to find a doctor who knows about CP and pain management.

I'm in Oregon. This is just getting to be so much.   I've lost all of my family and now I'm in a new place where I don't know anybody.   I've got a lot of financial problems now on top of everything else, and I feel so sick all the time I just can't hardly get anything done.   I have to do household chores little by little when I'm able.  I am a writer (I know you can't tell by this email, but I used to be called "great"), but I can't get much written when I'm this sick, let alone when I'm on much Methadone. I have gotten very depressed, little by little.   I used to counsel people with depression, and now I see it happening to myself but can't follow the advice I've given to others.   I find myself trying to think of one good reason to live or one person who really cares about me.   It's scary to come up blank.

I'm so sorry to drone on and on like this.   I'm really not asking for attention or for sympathy, just for empathy, maybe.   It would help at this point just to have someone understand.   I read the posts from all of you and I think maybe there are people who understand me.   Maybe I'm not going totally insane.   Thank you for taking the time to read my ranting and raving.   I will do the same for you.

Rachel
rachel4@harborside.com



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Susan's Story

4/29/02
I am not sure if I even suffer from Pancreatitis, but my symptoms are almost identical to what I have read on this site and others.

Four weeks ago I attended my local ER suffering from upper abdominal pain, vomiting, back pain and dehydration. I had also lost 6 kg in a week.   As I am a diabetic it was extremely important for me to find
the cause as soon as possible.

My doctor, who happened to be on call at the time suggested that it could be a reaction to a general anesthetic that I had three days earlier. I was admitted to hospital and stayed for three days while they re-hydrated me and did some blood tests.  Four days later I was back at the ER and this time I was told that I had pelvic inflammatory disease. I stayed at the ER until my doctor came in, he then admitted me again for another three days.   On the day of my discharge he suggested that perhaps I had problems at home that I
wasn't dealing with, or perhaps it was the medication that I was taking.   I actually thought that I was happy with my life.   But, hey, he was my doctor.

Pain continued, vomiting continued, sugar levels impossible to stabilize.   So I went to another Doctor, he did the same blood tests, neither checked amylase or lipase levels, and sent me home with anti-nausea drugs and pain killers.  I saw him again a week later and basically insisted on an ultrasound scan, he agreed.   I received the results today, saying that I have either a mesenteric or other cyst on or attached to my pancreas, either way my pancreas was involved.

I left a message for my previous DR to ring me, but surprise, surprise he hasn't so far. Just wait until I catch up with him.  Anyway that is my story so far, I have to have a CT scan and then surgery to remove or drain the cyst, and guess what, my old doctor is the local anesthesiologist.

I will keep you up to date on what happens next, keep your chins up people, and never lose hope.

Susan
susanr@wn.com.au



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Walter's Story

12/18/2002

I first developed my Pancreatitis in the winter of 1988. I had no idea what was wrong with me, other that I thought that I seriously might be dying. I had never experienced any kind of pain remotely close to this, I also thought that I might be having a heart attack? I had no idea. After two days of this, I finally wised up and went to the hospital. It took a ton of Demerol to even begin to settle me down. I have suffered with this disease ever since then, at times worse than others. They were quick to blame this on alcohol abuse, which I believe is very common. Personally, I don't believe that they have a clue.

I got severely bad by 1999, and eventually after about everything else, ended up in surgery at Saint Mary's Hospital in Rochester, MN. They removed about %40+, along with my spleen, to remove a stone that had blocked the Pancreatic duct. A week after this, I was once again sent to surgery to correct an adhesion in my lower intestines, which bothers me yet to this day. I did OK for only a short while but continued to have some major pain. It has continued to worsen to the point that I have been hurting so much that I started to have serious problems with work. They moved me to an office job to see if that might help, but other than developing double vision, did not help too much. As a result, I lost my job of over 30 years, my health insurance ran out, etc.

I have been trying to survive since then, basically without income. We have now lost our house I built in 75 the year my son was born. I now live with him in a basic dump, but it does have a roof. Have tons of financial trouble, nerves were bad before this, now they are clear shot. I am totally depressed and scared to death that I will lose my hearing. It is finally coming up after a year and half plus some.

Does my story sound like any of the others?

Walter Earl Werts
Bloomfield, IA
wertsej@netins.net



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Verne's Story

I share the same malady as most here do, I have chronic acute recurrent pancreatitis, it's etiology is hypertriglyceridemia. My name is Verne McCarthy.  I'm a happily (blessedly so) married man of 56 years.  I live in central Florida in a town named Kissimmee.  I own and operate my own business here.  The business is magic tricks (www.MagicMax.com).  I create and market new tricks to the magic world.

My pancreatitis first hit me when I was 28.  I had one attack.  Didn't know what it was, put me in the hospital for a week.  The  docs. said it was pancreatitis.  Nothing much else.  No suggestion for treatment, etc.  It didn't seem to matter, though, as I went many years without another attack.

Then, about five or six years ago, it hit me hard.  I had extreme pain.  I went to the hospital.  ICU for five days.  I was told to lay off of fatty foods, no alcohol, etc.  I did so.  I spent the next three years being admitted to the hospital every six weeks, like clockwork.  Always severe level pain, always a five day stay.  My doctor admonished me about laying off the alcohol.  He wouldn't believe me when I told him I hadn't had a drink since the first attack.

I kept having the attacks.  He kept not believing me that I wasn't drinking.  He was sure I'd just fallen off the wagon.  I honestly think he thought that the resultant pain would help cure me of drinking.  The reason I say this is, I'd be in the hospital close to 12 hours, before they'd start giving me any pain meds.  I suspect that he thought he was teaching me a lesson, and that it was for my own good, to encourage me to stop drinking.

I'd have my wife tell him I wasn't drinking ANY thing alcoholic. (I wouldn't even touch cough syrup, if it had alcohol in it) Didn't do any good.  I'd beg him to take blood/alcohol tests when I first went to the ER.  No good, he thought I'd been drinking several days earlier, and it had cleared my system by the time I went to the hospital.

I finally realized that since he thought I was an alcoholic, that he would never address whatever was really wrong with me.  So, I asked for a second opinion. I don't know why I didn't do it before.  I think I was in some mild form of shock from the dramatic change in my life/health.  Anyway, I got an appointment with a Dr. Toskes.  Told him my plight.  Advised I was a nondrinker, and had been for years.  Wonder of wonders, he believed me!

He asked a few questions, did one test, and determined that I have hypertriglyceridemia, which results in the pancreatitis.  SOOOO, long story short, I haven't had a hospital level flare up since then.  That was about two or three years ago.  However, I still have the severe pain.  He's prescribed narcotic level pain killers (Oxycontin, 40 mg, that I take 3 times a day, and Hydrocodone which I use to supplement the Oxycontin.

The time I spend "down" is slowly growing.  It is frustrating, as I'm sure you all are aware.  It's hard to run your own business while flat on your back in bed (actually, I spend most of my time in the lazyboy...being somewhat vertical seems to help).

Sooo, that's my story.  I am hopeful that some of you here may be able to give me some insight into my future.  What to expect?  Is there anything I can do to improve my health, or at least delay the onslaught of this disease?  I know to stay away from fatty foods.  (For the couple of years that my first doc. didn't believe that I wasn't an alcoholic, I subsisted on no more than 5 gms of fat a day).  I don't touch alcohol.

And lastly, thanks for letting me vent.  It seems that no one understands what we go through, except others with the same malady.

Sincerely,

Verne McCarthy
Kissimmee, Florida
Please feel free to contact me via email: mindstepper@msn.com



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Trish J's Story

1/20/2003

My name is Trish Johnson. I live in Monticello Ga. I've had Chronic Pancreatitis since 1996. I feel so blessed to have found this group. I have been feeling so alone. It really helps to hear other's stories and how you're all handling things. I have trouble dealing with the pain and not being able to eat much.  I really haven't found anything that doesn't cause me more pain. I'm in the process of being tested for Crohn's and colitis. Has any one else developed any intestinal problems along with the Pancreatitis?  I've had IBS since 1997. My intestines started having spasms along with my pancreas. I also go to MUSC and see Dr. Hawes, He is wonderful. I've 3 stents placed and also had my pancreas drained and flatten out, because the spasms cause the tail to fold up. I don't mean to ramble on. I just have so much to ask everyone. My Doctor in Atlanta wants to do exploratory surgery to check out my intestine and scar tissue and take out my appendix in the next couple of weeks, then I'll be going back to MUSC for another stent. MUSC is the only place I trust with my pancreas since the dye during an ERCP in Atlanta is what started this whole mess.

Thank you and God Bless,

Trish Johnson
Monticello, Georgia
TJbornagain@netzero.net.



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Stacy S's Story
Mon Mar 24, 2003

I had no idea there were so many others out there with pancreas problems. I guess I will share my story...

For 4 years I suffered with what the doctors continued to call heartburn. Last year I finally did some research and I discovered that I had gallstones, not heartburn! The description of symptoms that I read could have been written by me; it was the same description I'd been giving the doctor! I can't even begin to tell you how angry I was. Anyway, I told the doctor that the gallbladder had to go! Out came the gallbladder and a few weeks later I had what felt like a gallbladder attack but much worse and shorter. I didn't do anything about it because I knew it was an isolated incident. Ha! When I went to the ER for this they assumed I had a gallstone floating around in my common bile duct trying to escape but they found nothing with a CT scan. I also had an MRCP after my 3rd visit to the ER and again they found nothing. I was so happy when they told me that there was no evil gallstone making me miserable.

After that I didn't have another attack for 3 months. Just when you think you're in the clear... The only time I get attacks is when I'm under extreme stress and right now my husband and I are trying to buy a house. Also, my attacks usually only last a few hours and then they're gone. The doctors at the ER said I was very lucky because most people are usually in pain for days or weeks.

I think it's stress related. Anyway, one of my doctors lectured me about seeing a specialist and getting this taken care of. I know he's right. Honestly, I'm very scared about this whole thing. I'm not going to seek out a specialist until I have another attack. I don't want an ERCP or anything else stuffed down my throat. What really stinks is that I'm only 29 and I keep hearing "you're too young".

Well, guess what... I'm not too young for this because it's happening!!!! I'm very angry about all of this and it causes me more stress than I need. I'm sorry for rambling on about this but when you mention the pancreas to people they just look at you like you're talking Russian.

I think my husband is getting tired of me talking about how supportive you all are and the stories you've shared. :)
I still have a lot of researching to do on this subject. Unfortunately, I don't have a lot of faith in doctors and that's one of the reasons why I hesitate to see a specialist.  Doctors have done nothing. They told me there was nothing wrong with my back yet I insisted there was. It was all in my head, of course! The pain that was all in my head was a ruptured disc. Then there was the gallbladder incident and that just completely sent me off the edge.  Even now, my regular doctor doesn't seem concerned with the pancreas thing. She just prescribed me some pain pills and something for the nausea. I know she did that because she was tired of me calling. It's my psychiatrist who actually seems to be concerned with my pancreas. Funny how that is.

Anyway, I intend to educate myself about my pancreas and then find a specialist to help me. My psychiatrist recommended I find someone at Mass General (I'm in NH) but we'll see.

I've seen a few posts where it's been mentioned that people think of people like us as hypochondriacs. I worry that people will think that about me, especially at work. My boss seems to understand when out of the blue I need to go home when only 20 minutes earlier I was laughing and having a grand time. I often tell people that I wish I were a hypochondriac. How fantastic would that be!? Of course, I don't actually mean that but it would be nice if it was all in my head. Most doctors seem to think that anyway. My husband and I are buying a house! This is something we've worked incredibly hard for and are so proud that we're doing this without any help from family. Well, every time we do something related to the house I have an attack. We made an offer and I had an attack, signed some paperwork and had an attack, etc. etc. I can't wait to see what my pancreas has in store for the closing! This really makes me believe that the majority of my attacks are stress related. Eating always seems to help the attack along, too. I had a  horrendous day at work today (house and work stuff combined) and I decided that eating lunch wouldn't be in my best interest. I still haven't eaten but I’ll attempt it soon.

I have to say just knowing that all of you are out there has made me feel a lot better about this situation. I also feel like a toad for complaining when there are so many of you out there who are in worse situations than I am. You all
seem so brave and strong and I'm sitting here like Piglet from a Winnie the Pooh story. I know that with time I'll get better about things.

Stacey Dawn Sousa
Peace,
Stacy D. Sousa
New Hampshire
stacydawn@attbi.com



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Robin C.'s Story
 had my first acute pancreatitis attack in March of 2001. I woke up one morning with the worst pain I had ever felt and a high fever. After arriving at the ER, they took blood and x-rays, after which they admitted me to the hospital for 5 days. They had no idea what was wrong with me, I had a high white count, remained febrile, and continued to have severe pain. There, also, appeared to be some type of swelling in my bowel. A Laparoscopic Surgery performed a few days later revealed a ruptured cyst on my right ovary and fluid in my abdomen. The surgeon also performed an Appendectomy. They were not sure at this time if either any of this was causing the pain, but it was their best "guess."

Almost exactly a month later, I was in pain again and returned to the ER. A Sonogram was done of my gall bladder revealed large amounts of stones and sludge. The surgeon stated removing my gallbladder would relieve my problems. For two months following the Cholecystectomy, I was much better. One evening, while I was sitting watching TV, eating dried apricots, pain struck me so intense I cannot even describe it. My husband took me to the ER, where I was told I was constipated and was treated to a full enema. The pain subsided and I went home.

This same scenario occurred almost monthly for the next few months.  Each time I went to the hospital I had a different outcome. Sometimes my liver enzymes were elevated. Other times there was swelling in my bowel. Another time several cysts were visualized on my liver and kidneys, and my lipase and amylase counts were very high.  The doctor said none of these things should cause this type of pain. They stated is was probably some type of neuropathic pain.

The pain became constant, beginning under my right rib and radiating around to my back. One morning, after spending most of the night throwing up, my husband took me to the ER, again. This time the doctor admitted me to the hospital for pain medication and diagnostic tests. I endured every horrible test possible. Several days later, in pain, with no diagnosis, I was then sent me home.

I was referred to a pain specialist who felt after he examined me that I had a broken rib.  But, after having both a bone scan and x-rays done, no break or fracture was found.  I was then referred to an Osteopathic doctor in the area who examined me, and prescribed physical therapy.  I went to an infectious disease specialist because of the fevers, sweats and elevated white counts. No one had any answers, but I decided I would continue to go to doctors until I found one that could help me.

In January 2002 I finally got an appointment at Johns Hopkins University. The doctor I saw there ordered an MRCP and other blood work.  Nothing showed up on the MRCP, however both my lipase and amylase was quite high. My case was referred to the GI department, and that following March, I had an ERCP by Dr. Anthony Kalloo. He found my pancreatic duct clogged with sludge, as well as high basal counts, indicating Sphincter of Oddi dysfunction. He inserted a stent to drain the duct. I was so relieved that he found out what was wrong with me; little did I know what I was in store for. After I was sent home, it was hard to determine if I felt better or not.  I was still in a lot of pain, but he said that was to be expected.  About two weeks later I was back at John's Hopkins to have the stent removed because it had become clogged. He diagnosed me at that time as having developed mild chronic pancreatitis. He then sent me home with instructions to eat a low fat diet, quit smoking (which I had started again during this whole ordeal after having quit for 13 years) and take enzymes with all my meals.  He said my recovery would take up to a year, and at that time I might be able to stop taking the enzymes.

I think I was a little misled, because since that time I have had almost constant pain, and a lot of nausea, vomiting and fatigue.  The pain is always the same, to a greater or lesser degree. Sometimes I feel like my pancreas is this living thing inside of me with a mind of it's own, and no matter what I do, I can't get it to calm down. I take the enzymes religiously, eat a low fat diet, take prilosec twice a day, neurontin three times a day, and oxycodone or percocet for pain.

I am trying everything I can to get my life back.  I began taking antioxidants about a month ago, and I think they are helping.  I am trying to get some exercise as much as I am able, even if it is only a walk with co-workers at lunch.  I have just recently started doing yoga again, and have tried a couple of exercise classes, but that seems to irritate my pancreas.

My husband keeps telling me that I am getting better and better all the time.  Since I am in the middle of it, it's harder for me to see.  When I found the PAI website it was like an answer to a prayer.  I have only come across one other person in the last two years who has pancreatitis.  I have felt like the only person in the world with this illness.  I have heard much of my story in others, and have already made some Internet buddies to share with one on one. I see that my situation is not nearly as bad as some and worse than others.  But it doesn't matter because how we all deal with it can help one another.

Robin Cox



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Makalem's Story
March 26, 2003

Makalem is 16 and has Idiopathic Chronic Pancreatitis. Makalem has been very ill with an acute episode for about three weeks now. So far, we have been able to manage at home with clear liquids and increased pain meds, but that meant having her miss school. This has caused her to fall further behind, and left her spirits and self-esteem down, too. Before this horrid disease, she loved school, making an A / B with little or no effort; she also loved sports, which she had to give up to this disease. She would not give up her determination. In her usual sweet spirit, she switched gears and was looking forward to college and law school. At this rate, she is not able to finish high school.

She has only been diagnosed for 2 ½ years but the disease was apparently advanced when they found it. She has only been pain free, or close, for about 4 months out of that time and that was after a Puestow, which only afforded short-term relief. She uses Fentanyl patches and Dilaudid. Usually a three or four on the pain scale is a good day. She goes for days and days sometimes on clear liquids only, if she can tolerate those.

We read about the Total Pancreatectomy and Auto Islet Cell Transplant through the PAI and contacted Dr. Sutherland for more information, which we quickly received and gave to Makalem's GI team in St. Louis, MO. Her primary GI has agreed we should continue to pursue this option further, which surprised both of us since he is the most conservative physician we know.

Makalem, thus far, is determined to have this surgery. She feels it is her only hope of some kind of normal life, which, at this point, is just a fond memory. She is 16 and 1/2 and cannot attend school much, cannot drive, cannot play sports, cannot work, etc. She knows that she cannot do any of the things normal 16 yr old kids do now, but that determination mentioned earlier, is taking its toll. The worst thing is that she is losing hope, having trouble maintaining her vision and can no longer see where down the road she might be able.

I give her the information and, for the most part, let her make the decisions regarding her healthcare but there are so many things that can go wrong with this surgery. I am a single parent with no familial support, it feels like Makalem, and I are on a deserted island most of the time regarding this illness, for there is so little knowledge of it in the school and society in general and even less understanding or compassion.

This site has been an absolute blessing for me even though Makalem chooses not to utilize it yet. She says I can just pass her the information. I have e-mail addresses for some other teens that have had this surgery and plan to contact their mothers. I feel for all whom have to suffer with this for I see it every day in my beautiful, talented, loving child and what it has taken from her. I get so angry sometimes and would give anything to trade places with her so she could have her life back. Sorry for rambling...just a bit emotional today with the realization that the journey to this surgery has actually begun, and hoping and praying it is the right decision for my child. Thanks to all for listening and wish you all a beautiful pain free day.

Peace and Positive Thoughts,

Lisa and Makalem Martinez
Cape Girardeau, Mo. 63701
ldmartinez64@hotmail.com  / makalem@hotmail.com



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Rob L.'s Story
5.12.2003

My first visit to the hospital with acute Pancreatitis was 5 months ago in January of 2003.  Previously, I had not had to go to the hospital for 4 years previously, and then with a strange infection in my neck.  After experiencing abdominal pain, and then passing out twice (once in the bathroom and once in the emergency room) I spent the next five days on an IV drip.  After I was released, the specialist gave me a prescription for Pantaloc and sent me on my way.

Although he diagnosed the situation as Pancreatitis (he didn't mention acute or chronic), he was at a loss to identify the cause of it.  Nothing showed up on the ultrasound, the CT scan, the x-rays, etc.  And except for a high white blood count on the blood tests, nothing of consequence was found.  I rarely drink alcohol (even less since January), although I was eating too much fat and drinking too much pop (as many as 3 or 4 cans of coke per day).  When I was released, I asked if there were any dietary measures I should take,
but he did not mention any.

That was five months ago and today I just got out of the hospital from another five day stint on the IV because of another Pancreatitis attack.  I originally thought one visit to the hospital and I'd be good to go.  However, after doing some research on the web, and reading some of the posts, I realize that I'm going to have make some long term changes.  I am now looking for low fat recipes (as I love hamburgers, pizza, cheese, I need find substitutes) so if you have any good ones let me know.

I also had something very strange happen to me this time in the hospital.  Previously, with an attack, I experienced dizziness and then passing out, but this time something else happened.  I was in the hospital and was asked to stand up for an x-ray.  I stood up against the way and was about to breathe in deeply and hold it for the x-ray when I suddenly got light headed and began having the strangest dream.

Not realizing that I had passed out (as I did previously) I awoke to find the x-ray technician and two porters trying to wake me up on the floor of the room.  It seems that technician managed to catch me before I hurt anything (amazing feat for a 5' 6" woman of all 125 pounds catching me at 5' 11" 235 pounds).  But, the weird thing was, when I awoke I could see them yelling at me and I could tell why they were there, but I couldn't blink and I couldn't move and I couldn't talk.  This lasted for about 2 seconds and then released.  Afterwards, my legs and my arms were in pain as they had completely stiffened up.  This I have learned is a side effect.

However, the "seizure" type of experience I had was completely new and I have not read of anything like that being caused by Pancreatitis.  I told my doctor about it, but he seemed to dismiss it.  I had only seen something like that happen to someone before (my sister who is mentally handicapped), although never experienced it before.

In any event, I look forward to reading more from the group and hearing how you all cope.  It looks like I will be dealing with this for a while.

Best regards,

Rob Larsen
Nanaimo, Vancouver Island, BC  Canada
telebit@telus.net



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Julie W.'s Story
Sat Jul 29, 2000

I am a CP patient, and have been monitoring this site for several weeks.  I am now hoping you all can be of help to me, as I have reached a crisis with my medical team. My history is as follows: in 1980, I suffered my first attack of acute Pancreatitis. I was hospitalized with a highly elevated serum amylase, given Demerol around the clock, and was near death. The cause could not be determined. I was not a drinker and never had been, and did not fit any of the usual criteria for Pancreatitis profile. After weeks of agonizing tests, pain, vomiting, diarrhea, and severe weight loss, it was finally determined (through an ERCP procedure performed with NO anesthetic - I was told to "be tough")! that the cause of the Pancreatitis was a birth defect known as Pancreas Divisim, and the main duct was closed off. The pancreas would fill, then not be able to drain. It would swell and swell until the pain was unendurable. Although very few such procedures had been done at the time, it was decided to remove about 60% of the damaged pancreas, at the tail area, and a section of bowel was removed to fashion a new duct. As I was near death, this was presented as the only was to save my life. The surgery and recovery were an agonizing process, and it was fully a year before I was fully functional again. After all of that, the attacks continued at infrequent intervals at first, then gradually closer and closer together, until I was diagnosed as chronic 2 years ago. I have been mostly bedridden, as activity seems to be the major cause of flare-ups. Diet has been unsuccessful, as it seems that volume of intake at a time is more of a trigger rather than what is eaten. After numerous ERCP procedures, a stent was successfully implanted, and the duct was reopened, and the stent subsequently removed. But the pain persisted, in a constant state, with periodic episodes of acute attacks. I have been on Vicodan for years, most recently 1200 mgs every 6 hours, and even though liver function tests are within normal range, there was a concern that more years of Vicodan would result in irreversible liver and kidney damage, a sort of "prescription suicide." The ERCP doctor wanted to perform nerve severance surgery, which consists of six incisions in the back, deflating the lungs, and cutting the nerves surrounding the pancreas. The very idea of this makes me break out in a sweat. I have had 2 nerve blocks, under general anesthesia, with no subsequent cessation of pain at all. That surgeon said he would refuse to do another one, as this was too hard on me, and only stirred the pancreas up again for no reason. I have been turned down for a donor transplant, as being too risky and too little chance of success, and the anti-rejection drugs too hard on my depleted system. I was also rejected for another type of transplant, wherein the pancreas is removed, the pancreatic cells are harvested and then implanted into the liver, making you, in effect, your own donor. Having only 40% of my pancreas left, and it being so sick, it is felt there are too few cells left to make this feasible. So I was referred too a Pain Management physician, who, for the past 12 years has devoted his practice to treating only hospice cancer patients and now includes chronic Pancreatitis patients. Warning that it will take months of experimenting with different combinations of drugs, he has put me on a VERY aggressive drug therapy protocol, stating that my pain pattern was permanently imprinted in the spinal cord nerve system, and stating that the nerve
severance surgery would do no good at all! The drugs I am taking are designed to interrupt that pain signal, and not harm the liver and kidneys. But they are so strong that I have a sleep pattern of sleeping for days, then going 40 or 50 hours with no sleep at all. I am sometimes a walking zombie, and have had several episodes of "dead man's fall," where I would literally fall instantly into a REM sleep, and actually drop in my tracks. In one such episode, I fell headfirst from a sitting position, taking the full brunt of the fall on my right cheek, never even putting out a hand to stop my fall. What woke me was the sound of myself, calling for help. This fall resulted in a vicious black eye, barely
avoiding a concussion or broken cheekbone. Another time, I fell asleep on a heating pad, and was so deeply asleep that I did not feel the flesh on my arm burning, resulting in a large-area third-degree burn, which became infected and had to be treated in hospital. I fell outdoors another time, walking in my garden, and literally flipped over, and
rolled. I was covered in huge bruises. So here I am, bruised, burned and black-eyed. And all the time, the strongest of drugs are STILL not getting rid of the pain. My Pain Management Specialist recommended I return to the ERCP guy to reevaluate the Pancreatitis, fearing a worsening condition, just to be safe.

Right here is where we come into my present problem. To my amazement, the ERCP guy virtually refused to see me until I had made an appointment to have a Pain Differential test done, consisting of 3 days in hospital, with an epidural in place and varying dosages of a nerve deadening agent being fed into the epidural to determine whether they feel I am a candidate for either the nerve severance surgery or a morphine implant, consisting of a surgically implanted "black box" which would be refilled monthly with morphine. Or, I could have a feeding tube permanently
implanted, and not eat at all, just fill the thing up with a liquid diet, which would probably cause permanent diarrhea. (THIS is his idea of "quality of life??) When I protested that these were all pain management solutions, and that I only wanted him to evaluate the pancreas status, leaving pain management to the other specialist, who does nothing BUT manage pain. He said he would do a new CT scan, but ONLY when I was in hospital having the Pain Differential done. He refused to confer with the Pain guy, and did not bother to conceal his contempt for the drug
therapy program I was on, saying it was "killing" me! (Apparently his high doses of Vicodan weren't!) He even told my son, who had driven me to the appointment, that my family should get together and intervene, and get me to do this immediately, demanding that I make a decision and set up an appointment right then and there!

So, there you are. I bought myself a little time by promising to make adecision in the next few days, I just needed a little time to get used to the idea of having my back hacked up and my lungs deflated and never eating again and having a black box permanently hanging out of my abdomen, of having raging diarrhea, and fighting the constant threat of infection of these implants. My family is against the drug therapy because I am very unavailable to them; my husband is furious with me for being so "inconsiderate" and I am now a complete basket case, sinking deeper and deeper into a pit of anxiety and depression over this. My own feeling is that I would almost rather die than have ANY of these ghastly alternatives, and maybe that IS inconsiderate, but I'm feeling very much backed up against a wall, because NONE of them are proven to work, and I could go through these radical procedures for nothing, and end up far worse off than I am now.

By the way, the ERCP guy is also managing my disability with both Social Security and my disability insurance. Without his cooperation, I could lose all of that, and since I have been forced to retire from my job, I would also no longer have health insurance if the disability were at risk of being revoked.

Thank God for this very useful website. I found it after seeing the article in the Indianapolis Star about Karyn WIlliams. I live in Carmel, IN, and would love to hear from Karyn. And from anyone who can speak to the issue of these pancreas surgeries I have been threatened with!

Update-  07/26/2003

This involves a part of life that we all face sooner or later, and is simply a natural progression of that process that all families go through in their lives. And, as I said, I have to overlap some things these days, with energy being in precious short supply. As I've spent such a large part of my life with each of you as beloved family, friends, colleagues and treasured neighbors that you are all an essential part of me, and my life. You will forgive, I know, that I have, of late, shamefully neglected even basic correspondence with almost all of you, so I'll get right to it.

I recently visited my Primary Care Giver, Dr. Abels, having noted a steady, consistent and somewhat alarming inability to control my rising blood pressure readings. (Consistently running over 186/110; pulse over 95) She did not one, but a second EKG, then ordered Mel to take me straight to the ER, with STAT orders for a Third EKG and further work-up by the Cardiology team.

This came as a jolt - I had thought we'd have a short visit, then leave with a new scrip for BP meds.

Mel and I drove wordlessly for a while on our way to the ER, then I said to him that, while I would ask the docs for as much information as they could give me, I had made up my mind last March, (when the latest surgical procedure was done for the Chronic Pancreatitis, and which not only failed utterly to help, it  made things much worse, and landed me in bed for over 8 weeks), that that was the end of any and all invasive procedures that I was prepared to endure. I asked him to please try to understand, and I ask all of you, that we all have a limit, and for me, the past 20 years of roller coaster health, then the past 6 years of essentially being an invalid in constant pain - and no future for anything other than more and worse of the same, I had reached mine. Why would I allow highly invasive, horrifically brutal heart surgery, only to be restored to my previous state of ill health???!! He replied that he did understand, and would reluctantly support my decision.

So, all I allowed them to do in the ER was an X-ray and blood work, refusing to permit even an IV! All they could do from there was ask me to see a Cardiologist, which I agreed to do, with all of the same provisions. I did ask for a Priest, and had him witness a Patient Directive, which is now on file at St. V's. No heroic measures. No Code.

I feel an enormous sense of relief.

So, to continue, again making a long story short, the next day, in the office of the specialist that the ER docs referred me to, I did allow another (4th)! EKG, another X-ray, and a Sonogram. Without further invasive tests, all he could really tell us at this point was that there was evidence of a blocked main artery, possible multiple blockages, but that there was no way of predicting the time left that I would have without any kind of treatment. Under the circumstances - it could be a day, a week, years. Just no way to tell how imminent a heart attack might be.

He was really very understanding, but about all I had left for him to do for me was to give me a stronger blood pressure drug, (which is helping both BP and the rapid heart rate) and promise to take it easy (or easy-ER).

And so, my friends, that's my news. All I had asked of God was to let me live long enough to see my new grandson, and that He did grant me. I do spend about 90% of my time in bed now, finding my energy allows me to get up and bathe and dress, spend a day Up, then a week down.

I love and miss you all. God bless.

Julie W
julieshouse@juno.com
Carmel, IN



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Rosalynda's Story
January 2004

I had surgery last January at St. Marks Hospital in Salt Lake City. I spent a total of 13 weeks in the hospital, had 1/3 of my pancreas removed, a pseudocyst, and of course my gallbladder that had started this whole ordeal. Oh and 15 gallstone removed from my common bile duct. I was told initially that my stones were only pebbles and of course let it get that bad without realizing it. Also, I had an ERCP and a total of 13 CT scans while hospitalized.

When I was admitted to St. Marks from what I was told by my two specialist my levels were at 70,000.( I have seen my medical records and saw the recorded 30,000 ) My first 3 & 1/2 weeks of hospitalization I was in a drug induced state and incoherent. I had the whole high fever of 104 to 105, heart rate was usually around 170, high blood pressure, ect. I went from ICU eventually stepping down to a regular floor. I had endured the NG tube draining my stomach from bile, being fed by TPN, eventually graduating to a tube feeding in my duodenum, and various pick lines. I came home with a T-tube draining my liver and was blessed with an abundance of medications for a few weeks. It is a horrible story that I would not wish upon my worst enemy.

Anyhow, not too long after I was released and sent home in February my body started to feel all sorts of aches and pains. Some very similar to what I felt during my stay at St Marks. I was constantly reassured that my body was now different from the torture I had underwent.

I had another CT scan done in the middle of December and since have had an ultrasound of my liver. So far everything seems to be ok. I since have started going to the Dr. on a regular basis so my lipase/amylase levels can be monitored. On a recent emergency room trip doubled over in pain my levels were not a frightening high but still made the ER physician worrisome. In the wee hours of December 22nd my lipase was 322, then on that Tues. the 23d it was 387. As of last Monday the 5th, a little over a week ago it was 498. I have been complaining about pain that has been doubling over, causing me to not eat or drink because the pain worsens, nausea, and a few times having vomited. I understand my levels aren't at an all time high. However, I am worried that this will progressively worsen.

Sincerely,

Rosalyn Longoria Sharp
Utah
Mommy2MrJacob@aol.com



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