Hi all,
I'm writing on behalf of my boyfriend who went into the hospital on Friday night with a fever and lower abdominal pain. He just recently (two weeks ago) had a scope and small bowel series, both of which showed little more than slight irritation. In the hospital they gave him a CT scan and found a few absesses in the pouch, and inflamation in his small intestine which they though may indicate Crohn's. His surgeon mentioned the possibility of his pouch being removed and as a result, my boyfriend is absolutely terrified and depressed and miserable. Can anyone offer any advice? Has anyone had a similar initial diagnosis and kept their pouch? I'm relatively new to all this (1.5 years) and just feel terribly helpless and constantly uninformed. Any suggestions would be so so helpful. Thanks so much.

You might want to do a search here on Crohn's and j-pouch. We have a number of CD/JP people and they are doing fine with their pouches.

Also, if your boyfriend (and you) are up to it, you should pop into chat in the evenings. There is usually someone there around 9pm eastern time.

I'm sorry you and your boyfriend are going through this.

kathy

I have Crohns and I have a J-pouch. I know the chances of keeping the pouch are not high, maybe 30-40%. In november I was on 200mg Imuran, plus 6mg of Entocort, and 9 Immodiums per day and just barely holding. I was out of options so I started 4 1/2mg Naltrexone. Today, I'm on 4 Imodium tablets per day, period.
I know, it's not yet FDA approved and I sound like an old record but I know what I would do.
Dave D.

Thanks so much for getting back to me. My boyfriend will be having some tests to determine if his pouch is leaking, and we'll take it from there. And I had no idea about the chat - I will definitely check that out!

I will just say once again...there have been too many posts on this!! I have CD and a pouch too. Doing pretty well. I'm determined to keep this thing(the pouch)! You just have to stay on top of it. Good docs, find meds that work, etc. This place is a great resource. I'm on Entocort, Xifaxan, Canasa supporitories, B12 shots, take Forvia multivitiman. Entocort is a non-systemic steriod, which means it doesn't give the bad prednisone side effects b/c it doesn't get into your blood stream. Xifaxan is an antibiotic, also non-systemic. Good drugs, no side effects for me other than a little gas I think you just have to find what works for you. I totally understand him not wanting to give up on the pouch. If ya'll need someone to talk to, feel free to PM me. Also, good advice to do a "FIND" for Crohn's on here. Plenty of posts, unfortunately.

Good luck,

Liz

I guess i'm very lucky- I never realized that having Crohn's can result in losing your pouch. I have crohn's and a pouch, and I'm currently on no meds. I do have occasional "issues" but for the most part, I'm good!

It takes time. I was very sick right after the pouch, for about 2 years. Now, 6 years later, I'm feeling great!

Thanks so much everyone, for the helpful advice and input. It's so so wonderful to have this forum as a resource, I'm sure I'll be using it all the time!

Hi,

Did they do any biopsy's and what was the results. I once had a scare with having inflammation past my pouch in my small intestine and told it could be Crohns because the way it looked but it was pouchitis that spead and didnot clear with my previous bout/treatment.

Best of luck
Jessica

I'm in the same boat. My two Docs, both want to keep the pouch, even with Crohns.They did a dilation to open the obstruction. Biopsies next week. They think there is a 50% chance either way. Today I'm sore but there is output! Has not been like that in two years. I'm happy, it is scary and I take nothing for granted. Someone said stay on top of it. Good advice. My Crohns Doc is upset that they missed the Crohns blood test, that if positive, they could have started a different regimen of meds. Could this have stopped the obstruction? Even if I have the big C, Doc will still fight for the pouch, and Chemo if caught early! is sucessfull! My best to the both of you. Arthur