Idiopathic Pancreatitis

[MomInMI]

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

[TazLady]

Hi,
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

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[MomInMI]

Hey! I am a Texas Lady, Tx is just the abbreviation for it. And yes I am on enzymes,I take Creon two with every meal and snack. Plus I'm on acid blockers (Prevacid) to help with the fact that I over produce acids.
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

[MomInMI]

In regards to tests I've had done, in the world of ERCPs, I've had (I think) every duct cut and opened because they were all under tremendous pressure thinking that would help. I've had my Sphincter of Oddi worked on (twice) and stints put in the second time. I was talked to about having an MRCP, I'll have to look up that link from the one gal that posted the link for it. Thanks for that, by the way. I'm thinking of going back to another pain clinic to get some more blockers done, something that's supposed to be stronger and (unfortunatly) more evasive.
Bye again!

[Nanny]

I'm not a tax lady, but I do have chronic pancreatitis, and I, like Baseball Mom, take enzyme supplements and they do help a lot.  I take Pancrelipase, highest dosage, 2 with every meal and snack.  I can't see why they would want to continue to do ERCP's on you unless they are putting in stents or doing surgical work on your ducts.  You have CP, and it appears it's caused by your CF gene, so why do more?  I know many people who have had the blocks done and just been back in pain weeks or months later.  

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

[Nanny]

I'm not a tax lady, but I do have chronic pancreatitis, and I, like Baseball Mom, take enzyme supplements and they do help a lot.  I take Pancrelipase, highest dosage, 2 with every meal and snack.  I can't see why they would want to continue to do ERCP's on you unless they are putting in stents or doing surgical work on your ducts.  You have CP, and it appears it's caused by your CF gene, so why do more?  I know many people who have had the blocks done and just been back in pain weeks or months later.  

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

[eprice]

I just read about a new test called mrcp that is none invasive like the ercp. If your interested the address is
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.

[Nanny]

LOL....silly me!

[Baseball_Mom]

We are not tax ladies either.  I assumed that she was from Texas and so am I and that is why her ID said TXLADYINMI.  Just thought I would straighten that up.  Have a GREAT day!

[Baseball_Mom]

Hi - I'm actually a TX Lady in Va.  I don't know much about your problem other than the fact that I continued to have problems after having my gallbladder removed in April of last year.  After having an ERCP with Sphincterotomy and ending up with pancreatitis the Gastro doctor put me on digestive enzymes.  I take 3 tablets before every meal and they work wonders.  Perhaps you can ask your doctor about this.  There are several types of digestive enzymes and not all of them work the same on everybody.  The kind I'm on is Panakose.  Hope this information helps.  Take care and please keep us posted on how you are doing.  Have a GREAT day!