Elicia's Story

Hello there, my name is Elicia and I suffer from chronic pancreatitis. Please sit back, relax, and read my story. I hope I can help just one person that reads this, begin to understand how this disease affects us, or possibly find some answers to their own illness.

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

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

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

By February of 2000 I was getting sick almost every day and still had no answers. Another EGD and the surgeon said I should have my gall bladder out, it looked "sludgy" and will "probably" stop these attacks of severe pain. OK, fine, I did it. For the entire month of February I was in and out of the hospital, twice by ambulance. The pain was so severe I thought I was having a heart attack every time one hit. They even sent me to a special heart hospital to have a scan done, yep, normal! They had no idea why I was ill or what was causing theses spells. The pain is so severe that I can't breathe; when they hit the pressure is unbearable, it hurts clear into my back. They finally decided I had IBS, irritable bowel syndrome. It's just a spastic colon that is causing my pains, and I should stop being such a baby and learn to "LIVE WITH IT"!! Easy for them to say!

I went through dozens of doctors and gastro specialists. They all kept telling me everything was normal. Continue on a low fat diet and deal with it. Throughout the next couple of years, and all the testing, I was diagnosed with not only IBS but...fibromyalgia, mucus colitis, erosive GERD, spastic colon, severe osteoporosis, pinched nerve in my back as well as degenerative discs, excess stomach bile, the diagnosis went on and on. I lost over 30 pounds in barely a month, I'd wake up nauseous every day, have constant pain, and the fatigue was awful. Several specialist said they would think it's sphincter of oddi or pancreas, BUT my amylase, lipids, and liver levels were all normal. Therefore, it couldn't be any of that. I have since learned that not everyone with pancreatitis has abnormal levels. They gave me prescriptions for pain meds so I could avoid so many trips to the ER. Sometimes they work, sometimes they don't. When they don't, it's back to the ER for morphine and phenergan until the attack stops.

I can't tell you how many times we would travel back and forth to the ER in the next year. Repeating test after test with no help. Not only was I feeling depressed and at my wits end, but so was my husband. He knew from how I looked and acted that something just wasn't right. Thus I began a search for answers on my own. The Internet was a big help and full of information. That is when I found a wonderful group of people that all seemed to have the same problems I was having. They all have pancreatitis and several were speaking of a Dr. Lehman in Indianapolis, IN. I got his number from one of them and made an appointment. In three weeks I was having an ERCP done. This is where they go down the throat as well, but now they can continue on into the bile duct, pancreatic ducts, and see all of those organs in detail. I was then diagnosed with SOD, Sphincter of Oddi Dysfunction. That is where the sphincter muscle in your stomach has too much pressure and the stomach "juices" can't flow through properly. Normal pressure is about 40, mine was OVER 500! They couldn't understand how I functioned for so long with a pressure that high. One of the highest pressures Dr. Lehman had ever seen. He invented this procedure so I know he's seen many!!

Well, they cut my sphincter muscle in two places and inserted two stents in my ducts. There was severe scarring of my pancreas and bile duct, so they assume I had passed enormous stones at one time. (Probably one of those days I had to call 911!) This surgery was done October of 2001 and I had a rough time healing from it. Was back in the ER three times in November and twice in December. They say an ERCP irritates the organs and it takes time for them to settle down. Then I started feeling better. It was wonderful, on a low fat diet, but could eat, go out, and enjoy my life again. IT WAS GREAT!!! Things were looking up and we began to make plans like we use to. But then in March, 2002, I started having pain again. This time more severe on my left side and in my back, my amylase levels were going up and down like a yo-yo and I was diagnosed with chronic pancreatitis. The problem now is my SOD is also back.

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

I spent all of last week in the hospital getting IV fluids and pain meds. Once my pain was back to normal, I came home. By now my veins are so "tired and weak" that they must move my IV every day to a new location. It burns really bad when fluids go in, my hands and arms swell, and I bruise terribly, it hurts for weeks. I am told my next move will be a central line. That is where they put the IV in your neck. Yuck! But I've heard they are better and pain free from others that have had them.

We have contacted Dr. Lehman and after reading my charts from the local hospital, he believes my pancreatitis is getting worse. I am traveling back to Indiana April 2, 2002 for another ERCP, and to re-evaluate my medications. I know now that this is an on going battle that will never end. I had to quit my job last May and am still trying to get Social Security Disability. I'll finally have a hearing at the end of this year for approval. It's a long, hard, process but we won't give up!! In the end it will have taken almost two years to get disability. I am lucky to have a spouse around to get the bills paid. I have no idea how someone on their own does it.
My advice to anyone with health problems, that are told over and over there is nothing wrong with them, is this:

You know your body better than anyone, you know when something isn't right. Keep fighting, doctor after doctor if you must, until you get some answers. If medications or treatments don't help, SPEAK UP!! You must be persistent, educate yourself, and hang in there!!! Granted, I have good days and I have bad days. Some days I do ok and others I just cry and want to give up. BUT YOU CAN'T GIVE UP. Lean on God, let him be your strength when you can't be strong. Praise him for the good days, and let him share the bad ones. YOU CAN MAKE IT THROUGH!!

If anyone has any questions, or just need to talk, feel free to contact me .
GOD BLESS!!

Pancreatitis Message Board

Designed by © Mary L. Hayden 2001-2002. All rights reserved

None of these graphics may be duplicated, copied,

uploaded to another server or linked to.