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14 replies

Crohn's with J-pouch after UC

B BlmBlpMember
Hi. I've been posting in Pouchitis because that is what I thought my problem was. Turns out I have a new diagnosis of Crohn's. I was hospitalized last week for several days after a terrible bout of diarrhea, abdominal pain and fever. Thought I had either picked up a bug during my vacation in Turkey or had a bad case of pouchitis, though I had never had a fever in the past with pouchitis. I was scoped under anesthesia in the hospital, had a CT with contrast and dozens of blood and stool tests. Today I saw my doctor to review results and it looks like I have Crohn's now. All other tests were negative, including Cdiff. I think I have seen posts by other members who have had a j-pouch for UC then developed Crohn's. I would appreciate any suggestions. I'm worried about my pouch, my small intestine and future health concerns. I've had my pouch since 2004 after 10 years of UC. Also had one mechanical obstruction requiring surgical intervention and a few cases of pouchitis. Currently on double antibiotics. Why is Crohn's treated with antibiotics? Sorry this is so long. Thanks for your help.
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SubskySubskyMember
I'm going through almost the same situation right now. I was diagnosed with UC in '04 and had my colon out by the end of the year. I've had my j-pouch for over 6 years, and like you have had pouchitis a few times since then. I was hospitalized a few weeks ago and the ct scan showed that my pouch was inflamed and that the right bowel wall looked a bit thickened. They had taken biopsies from my pouch and the bowel above it, both came back negative for crohns. I had a scope of my stomach on monday and he said it looked good, and he went a bit into the upper bowel and said it didn't look too bad but had some spots of inflammation. They took biopsies but I don't know the results yet, think I'm gunna call my clinic tomorrow and see if they can print off the results for me, since my appointment isn't until like July 5th. So I might also have crohn's, but it's not for sure.
SubskySubskyMember
I'm not taking a double dose, but I'm taking both cipro and flagyl (250mg each) twice a day for 14 days, the last day being tomorrow. Also on 35mg of prednisone which I'm decreasing 5mg a week. So the next two-three weeks are gunna be very important to see if I stay on the mend or if all the inflammation/pain comes shooting right back. I hope that's not the case, as I've totally changed my lifestyle in a hope to keep any problems away. All I can do is wait and see what happens.
Jan DollarJan DollarModerator, RN, retired
For whatever reason, some cases of Crohn's disease, and UC too, respond to antibiotics. So, it will either work for you or it will not. The idea is that there is an immune response to the bacteria in the gut, causing the inflammation. Altering the bacteria can reduce the inflammation.

You were probably on vancomycin due to a suspected case of C. difficile, since that is what it is usually used for, but apparently that was ruled out.

Basically, the meds for UC and Crohn's are essentially the same, but there are more biologics approved for use in Crohn's than UC, and antibiotics seem to be more effective for long term use in Crohn's than UC. Even though UC and Crohn's are related diseases, both being IBD, they are not exactly the same.

http://www.ccfa.org/what-are-c...ohns-medication.html

Jan Smiler
KangaRoeKangaRoeMember
Hi Barbara,

I got my pouch 20 years ago and I had a diagnosis of UC also. I have had problems for years with bleeding, bloating and pain. The docs keep diagnosing me with pouchitis and I was always put on antibiotics. I have had operations/procedures along the way for adhesions and obstructions etc.

I was finally diagnosed with Crohn's last year and was put on Pentasa. This past year has been almost free of bleeding for me. I have not felt this good in 20 years. The doctor was telling me there are a lot of pouchers like us who are being diagnosed with Crohn's after years.

You might want to see someone who specializes in Crohn's Disease.

Good Luck with finding a doc and getting relief. Now that you know things will get better.

KangaRoe
B BlmBlpMember
Hi KangaRoe,

Thank you for the positive feedback. I have been a bit depressed with the new diagnosis. I called my old GI today and she recommended a specialist in Crohn's Disease. I will be setting up an appointment with him soon (and he is a preferred provider!).

I am glad that you are doing so well---to feel better than you have in 20 years is wonderful.

Take care and thanks again!
KarbearKarbearMember
It looks like I may be falling in the same boat. I had my surgeries 2 years ago because of UC. Since then I have had abscesses, cuffitis, chronic pouchitis, and now a fistula with more abscesses. My diagnosis hasn't officially changed yet, but Crohn's is suspected.

For cuffitis I was treated with hydrocoritisone suppositories that cleared it up pretty quickly with only a few flares since.

Both the abscesses and chronic pouchitis were treated with antibiotics. I have been on long term Cipro because I don't tolerate Flagyl well. After months of inflammation I was put on Entocort which helped significantly with the pouchitis. Entorcort is a steriod that mostly stays in the gut so you have less side effects than Prednisone.

I see the surgeon next week about the fistula, so I'm in a holding pattern on where things will go next.

The Crohn's diagnosis isn't the end of the world. I have heard and know many people with Crohn's and a j-pouch who are doing great.

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