I believe that I have (had) ulcerative colitis. I have a J-Pouch now, but some recent events have led to the possibility that I may have Crohn's instead of UC.

Quite a while back, my GI surgeon made a comment that if I have Crohn's, I may lose my J-Pouch. Is this true?

I suspect and hope that there are many Crohn's sufferers out there who have J-Pouches and are doing well. Can someone confirm this for me and make me feel better?

Thanks!

It's about 50/50, so there is a higher possibility of failure. With the aid of many of the newer drugs available, I am hopeful that my pouch & I will be able to "coexist" as long as possible.

Hi, I was diagnosed with UC about 18 yrs ago. about 12 yrs ago Drs at mount saini, NY , removed my colon and made me a J pouch. I was very happy for abouy 10 yrs except for pouchitis here and then. about 2 yrs ago, i got very sick with abdominal pain and very frequent bowl movements. after many tests, the drs are now saying that I had Crohns and not UC. I now have a stricture right above the pouch and about 7 inches of deseased small bowl right above the poch. They are recomending removal the 7 inches and reconecting the pouch to the small bowl. But they also say that there is a big chance this can just come back again. what do you think I should do? thanks, Danny

Appreciate any additional suggestions/thoughts that others are willing to share.

Thanks Shelby. I wish you the best of luck.

Danny... I, unfortunately, don't have any great suggestions for you. The scenario that you are presenting is exactly what I would like to avoid. As I'm unfamiliar with Crohn's, how it can be treated, and what to do when a J-Pouch is involved, I hesitate to suggest anything. Perhaps you should start a new thread posing this question?

Hey guys,
Been there done that. I've had a J-pouch for 10 years. Then in 2004 my G.I. gave me a capsule endoscopy that suggested Crohns. In 2005 I had several severe blockages and xrays indicated that the capsule was still in there so I had to have surgery to remove it plus a stricture above the pouch. I wanted to keep the pouch so I had discussions with the surgeon in advance to see what his attitude was towards keeping the pouch. He had no problem with that so I chose him for the surgery. Some surgeons will refuse and just take the pouch.
He removed the camera which was hung up on an old stoma site; straightened up the stoma site; and removed the stricture. BTW, biopsies then confirmed Crohns.
I know the chances of keeping the pouch are less that 50% but it has not caused me any problems since. Knock on wood.
Dave D

I was just diagnosed with Crohn's after 20 successful years with the pouch. My doctor gives a pretty grim scenario and says my only option is Remicade. My insuance, CIGNA, refuses to pay and it is $8000 per dose. My questions are has anyone out there had success with Remicade in this situation and has anyone been able to have insurance pay for it. Thanks for being there. I was starting to feel like I was the only one with this problem

I know of people on a Crohns forum whose insurance paid for Remicade. Is it because they would prefer to remove the J-pouch instead? That won't necessarily fix Crohns:
http://www.healingwell.com/sitesearch.aspx?cx=010904608...e&cof=FORID%3A9#1118
You may have to copy and paste.
Dave D

Insurance won't pay because they are applying rules of coverage that apply to people with an intact GI system but don't consider that I have a pouch. They want me to try other medicines first and see if they will work, but my doctor says it is a waste of time because only Remicade will work, at least temporarily with Crohn's and a pouch. He says I need the Remicade right away to stop progress of the disease. Has anyone tried Remicade?

I have and it closed my fistula. I go every 8 weeks for maintenenance Remicade treatments. I am also on 6MP which helps absorb the Remicade. I was originally diagnosed with UC, had the jpouch but now they think it could be Chrohns. My insurance does pay, I pay a copayment for each visit. I hope this helps. Has your dr talked to the insurance company and explain the situation? It will cost them a lot more money to try a bunch of meds that won't work. Insurance companies can be so frustrating. I hope everything works out for you.

Thanks for the reply. How long have you been on it? How do you feel? I have not heard of combining Remicade and 6mp.

Looks like I am also in the situation that you are. Just this past week I had a follow up visit and they told me that it looked like I had crohns just above my pouch. Now here is the next weird twist to the story.

I also was diagnosed with Celiacs disease (wheat/gluten allergy). The doctor that I saw regarding this diagnosis told me that sometimes celiacs disease can be confused with crohns or UC. I am on a strict gluten diet for the next 3 months and then will go back for an upper and lower enoscopy. If it is crohn's, my doctor told me that 80% of people are able to keep their pouch. He is suggesting that I go on Imuran/Azatheiapran.

Wow, that is an interesting twist. I will have to ask my gastroenterologist about that possiblity for me. I would hope that he would have considered that. Do you have any ulcerations above the pouch? I have 2 small ones and a narrowing but the pathology report was not conclusive for Crohn's. I had my first REmicade dose yesterday.

Hi! I had a j-pouch for UC with pouchitis problems. When I switched to a k-pouch CC said I had Crohn's instead of long-standing UC diagnosis.

I take 6-mp and have not had to try Remicade because the 6-mp has worked for me for over 4 years to prevent any flare. Maybe your insurance will cover 6-mp which has a generic variety. I'm unclear on the details, but have been told that the company that had the original patent on 6-mp was sold or something so actually there is no longer the original medicine, so one might as well use the generic. Both have worked equally well for me. Maybe your dr. might consider it.

I am currently in that exact situtation.I am currently scheduling the take down of my pouch. I believe it is my best option. I did get an indpendent second opinion and they agree.

Tom, are you going straight from Crohn's diagnosis to surgery? Didn't you want to try Remicade or has your pouch been severely affected? I had my first Remicade infusion last week and it seems to be helping already.