I was dx with Crohn's at age 19, was sick 7 years, 3 surgeries resulting in ileostomy. No disease for 34 years. Pain began in June, gastro Dr. did small bowel study and MRI and told me there was nothing there and he gave me pain meds. Told me there was nothing more he could do. ER 1 week later, MRI showed multiple sites of CD, fistula, and thickening mucosa. Lost 25 lbs., stoma sunk in and convex flanges are not helping. So thin belt won't hold convex in place. Any advice from anyone?
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34 years remission - dx AGAIN
- Thread starter ddbauder
- Start date
Hi there and welcome to the forum!
You have come to a wonderful place for advice and support.
34 years is the longest remission i have ever heard of! I do not have any experience with a sunken stoma, but I have read other members talk about this, so hopefully they will be along soon to advise and share.
Were you taking any meds during your remission, and what are you taking now to get everything under control?
You have come to a wonderful place for advice and support.
34 years is the longest remission i have ever heard of! I do not have any experience with a sunken stoma, but I have read other members talk about this, so hopefully they will be along soon to advise and share.
Were you taking any meds during your remission, and what are you taking now to get everything under control?
I never questioned the "remission" until it came back in July of this year. I took NOTHING for 34 years. I had a fairly normal life, with the exception of partial obstruction when I did something stupid like eating a bowl of popcorn. Right no I am on Remicade, Azo, and Endecort. Seems to be working, but I can only eat small tablespoons of baby food, liquids, etc. Hoping the Remicade does the trick.
SarahBear
Moderator
- Location
- Charleston,
Welcome to the forum, ddbauder!
For the questions about your stoma, you might want to have a look around the Stoma Subforum. Feel free to post your own thread about it, if you'd like.
I hope the medications get you back in remission soon! How long have you been taking them?
For the questions about your stoma, you might want to have a look around the Stoma Subforum. Feel free to post your own thread about it, if you'd like.
I hope the medications get you back in remission soon! How long have you been taking them?