First timer here, chronic pancreaitits
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First timer here, chronic pancreaitits
| Wed, 12-28-2005 - 1:56pm |
Hi. I'm Ronda. This is my first time visiting an ivillage message board. I have chronic pancreatitis and NASH (non-alcoholic steato hepatitis). They are very painful diseases and very hard to deal with sometimes, so I'm always looking for support/imformation sources. I've read a few of the posts here. It seems like a good place to come, so I thought I'd say hello and hopefully get to know some of you.

Hi Rhonda!
How are you doing?
Thanks for the welcome. I'll tell you about my pancreatitis and try to make it as brief as possible, but it's a long story. In 1993 I was having right upper quadrant pain, was tested for gall bladder, ulcers, and then a GI Dr. sent me to another GI at a teaching hosp. He did an ERCP with manometry, found I had SOD (Sphincter of Oddi Disfunction) and did a sphincterotomy (which did relieve my pain) at the same time as my ERCP. It was also noted that my pancreas did not empty properly when the contrast agent was put in it. I developed acute pancreatitis from the ERCP and spent about a week in the hosp. In 1996 the pain had come back so the same GI(he specializes in pancreatic diseases) did another ERCP with another sphincterotomy, giving greater relief than the first, but causing an acute pancreatitis so severe it almost killed me. I had multi-system failure, collapsed lungs, pneumonia, an ileus, kidneys started shutting down. This time, the acute attack was so severe it caused permanent damage and my pancreatitis became chronic. By the way, most cases of chronic pancreatitis, CP, now are caused by gall bladder disease. Alcohol used to be the main cause, but I think that's changing. Most people I know with it also have SOD. In the beginning, the tests I had (CT scans) couldn't confirm CP, but the Dr. was sure I had it. I had epigastric pain, sometimes severe, high fat foods caused pain, and nausea. Since 1996, I have taken darvocet for pain when needed. Eventually the pain was pretty constant and I finally went to a pain management Dr. about a year ago. I now take oxycontin twice a day and oxycodone for breakthrough pain, which is every day. I take meds for nausea as needed. I also take pancreatic enzymes with every meal and an acid-reducer so the enzymes will not dissolve in my stomach before they get to the duodenum where they are suppose to work. I follow, most of the time, a low fat diet. When I have flare-ups I go on clear liquids for a few days until it calms down. Sometimes the pain is so bad I have to go to the ER for a shot of demerol. The pain gets so bad sometimes I can't hardly breathe. One time I was laying on the couch with the phone about a foot away, but was in so much pain I couldn't have picked it up to call for help if I had wanted to. A little over a year ago I had an endoscopy with secretin test that confirmed the pancreatitis diagnosis. Up until then I had only had CT scans and they never showed anything. It was explained to me that the damage is microscopic and doesn't always show. A couple months ago I had an MRCP which showed my pancreas has atrophied. My amylase and lipase are elevated with acute attacks, but most people don't have elevated amylase and lipase levels with chronic pancreatitis.
The NASH was suspected a couple years ago because my liver is very large. I had a liver biopsy that confirmed NASH and fibrosis of the liver about 15 months ago. NASH is also very painful. My liver is so enlarged that it stretches the liver capsule and causes spasms which just take my breath away, but they usually don't last too long. I also take a muscle relaxer every night to help control that. I can tell the difference between the liver and pancreas pains. Diabetes, high cholesterol, and high blood pressure tend to go with NASH. I have all of those too. My liver enzymes are high sometimes, and normal sometimes. If the NASH progresses to cirrohsis, I'll be put on a transplant list.
Most people I know with CP at this stage are on disability, but I still work full time, thanks to the pain meds. I don't want to go on disability unless I absolutely have to. I'm an interpreter for deaf kids at a middle school and I love my job. I don't want to give it up. Being very careful helps control my pain too. I can't twist, stretch, lift anything, or let myself get too tired. If I do, I'll end up in bed for a few days because of the pain.
I think that about covers it. The CP especially, is very tough to live with. I can be just fine one minute, and doubled over the next so it tends to ruin plans and definitely affects my life in many ways. If you have any questions, feel free to ask.
Ronda
Wow Rhonda,
Just when you think your life is bad, someone comes along and shows you that it isn't bad at all.
Thanks Lynn,
But don't give me too much credit for handling all this. LOL, I have no choice. I've got it, and I'm not ready to die, so I have no choice but to keep going. Just like everyone else here I'm sure. That, and I happen to be the daughter of one very stubborn man, and I'm a lot like him. I'm one of those, "I can handle it myself" kind of people. That's not so good sometimes, but it also helps sometimes.
I'm glad you got something out of all that mess I wrote,LOL. If you ever want to ask me anything, feel free. I may or may not know answers, but I never mind being asked.
:) I think I'm going to like this place.
Ronda
Hi Ronda - welcome to the board. I first discovered the message board a couple of years ago when I was found to have gallstones & was facing surgery to remove both the gallbladder & stones.
The ladies here have been a wealth of information and a wonderful source of support.
You certainly have a lot going on! I'm sure you know more than most interns do about internal medicine.
Thanks for all the info on 2 organs I know relataively little about,
Jo
Hi Jo,
Thanks for the welcome.
Pancreatitis is not rare, but not very common either. Most people don't really know anything about it unless they or someone they know have it. NASH is kind of the same way. If I say I have hepatitis, the first thing people say is, ..."C?", or they ask me if it's a, b, or c. I say neither, it's NASH, and then have to explain it. Or I have to let them know right away that it's a hepatitis that can't be spread from person to person. And I'm sure most people think I'm an alcoholic when they hear I have pancreatitis AND liver disease. LOL, not true. I've never been a real drinker.
Hope you are having a good day and thanks again for the welcome.
Ronda
Welcome
Thanks for the welcome. I may come to love this place too. So far, it's great.
Ronda