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Gastroenterology (Expert Forum)
Idiopathic Pancreatitis
This forum is for questions regarding Gastroenterology issues such as Acid Reflux (GERD), Barretts Esophagus, Colitis, Colon/Bowel Disorders, Crohn's Disease, Diverticulitis/ Diverticulosis, Digestive Disorders, IBS, Stomach Pain.
Idiopathic Pancreatitis
by MomInMI, Feb 25, 2002 12:00AM
I'm new to the board, so forgive me if this is reduntant. I'm a 28 year old mom of 2 young children, and have had Idiopathic Pancreatitis for 5 years now. I have, 2 years ago,discovered that I do have a mutated CF gene that could possibly be causing this problem. Does anyone know of any new treatments for this other than ERCPs? I've had that procedure numerous times and each time it leaves me with a "rip roaring" case of pancreatitis. This is getting old. I'm living on pain killers (trying to keep them minimal, but can't get through the day without them), my husband and children are frustrated, but no more so than I am. I've tried to beta blockers for chronic pain. They worked for about a week, but left me with severe back pains for 3 weeks.
Also, are there any really good support groups out there any of you might know about? I've tried others, and came away feeling really crappy. Most of the people in them would rather tell you how terrible they have it rather than "encourage" or "support" you in your own difficult times.
Well, thanks so much.
Angie
Also, are there any really good support groups out there any of you might know about? I've tried others, and came away feeling really crappy. Most of the people in them would rather tell you how terrible they have it rather than "encourage" or "support" you in your own difficult times.
Well, thanks so much.
Angie
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I joined a support group that has really helped me keep my sanity and provided me with a lot of information and support. It's called the Pancreatitis Association International and its message board is ***@****, but you have to join Yahoo to see all the messages, and you can join the group by going to Yahoo and joining through YahooGroups. I don't know if you've looked there, they have research material, a chat room, and a very active message board. Post again if you want any more information.
Nanny
I joined a support group that has really helped me keep my sanity and provided me with a lot of information and support. It's called the Pancreatitis Association International and its message board is ***@****, but you have to join Yahoo to see all the messages, and you can join the group by going to Yahoo and joining through YahooGroups. I don't know if you've looked there, they have research material, a chat room, and a very active message board. Post again if you want any more information.
Nanny
www.borland-groover.com/mrcpvs.ercp.htm
I read something else on the mrcp earlier today but don't remember what site. I typed in medical test risks and gallbladder test in my search engine. I hope this info helps.
Just thought I'd add my two cents in here too. I have severe chronic pancreatitis. I go for another ERCP next week to cut the pancreatic duct, bile duct, insert stents and also cut the Oddi Spincter again. I am also on pancrealipase pills. I don't think 2 is a high dose. I take 5 at each meal now and was told I would probably be moving that up to 9 each meal. I found that they did help in the first 2 months, but after that, well....the pain just gets increasinly worse. And you learn to live with that pain. They have no idea what caused mine as I do not drink or use drugs. I just hope it doesn't progress to anything worse.
This is a great forum to talk to other people that have what you have.
Thanks for listening.
TazLady
Thanks for the advice and comments. Hopefully I'll see some of you on a message board again. And thanks for the welcome!
See y'all!
Angela
Bye again!