I need some help. My son (age20) just completed step 2 of a 3 step procedure. All along he has been treated for UC and since he had step 2 the biopsy is showing signs of chrons. what does this mean? The dr. said this means the success rate of the j pouch is jepordized. I did not get to go into the appointment with him so I don't have all the information. The dr says we go ahead with the j pouich and of course me son is all for that. He also goes back to university in the fall so I am totally worried and confused. He has handled all of this so well missing a term at university (tough) and being so sick that he was forced in to surgery but it was all with the understanding of going to a jpouch and will be healthy. Does this mean his small bowel can now become inflamed or does it mean chron's will develop in the pouch and you go back to a osotmy. Has anyone had anything similar with this? Thank you anyone that will take the time to reply. I also have been one those people that read posts constantly and find great comfort. Thanks in advance for any info.

Joan,

Your assumptions about the implications of the biopsy are accurate. But, as discussed on this board, suspicions of Crohns is sometimes inaccurate - both ways. I think it is more common with people here to be diagnosed with UC or indeterminate UC and then have a subsequent Crohns diagnosis. Do a Find on 'Crohns' and see what posts come up. There are quite a few discussions about this.

And as for the long-term, there are people on the board living successfully with a pouch (and usually medication) while having Crohns. Other Crohns patients here have had to end up with a permanent ileostomy.

I can certainly understand your concern. In the case of Crohn's disease, the j-pouch is not used as a method of treatment because of it's failure rate in Crohn's patients--Jan could probably advise a better estimate, but I believe it's somewhere in the 40-50% range. However, it's important to note that it sounds like the doctor said your son has some signs of Crohns. Many times there is a very gray area between UC and Crohns (with a name all its own -indeterminate colitis). Even when testing is done to check specifically for Crohns, false positives are not uncommon, and you will find more than a few people on these boards who have been through that. I'm assuming if the doctor still wants to go ahead with the takedown, he's not arrived at a definitive diagnosis yet. This information certainly is cause for some concern, but it does not mean that in your son's case, the pouch will fail. It may be a good idea to call and speak to the doctor (if your son has given permission for you do do so) so that you can get some more information for yourself. It sounds like some further testing might be a good idea.

The bottom line is that regardless of whether Crohn's is suspected or confirmed, the j-pouch is there and will be utilized. The Crohn's diagnosis is not a reason to defer takedown or to remove the pouch. All it means is that your son is at a much increased risk for chronic pouch issues and possibly failure. This can be more than 50% in confirmed Crohn's. You may as well presume that he will fall into the percentage that has a well functioning pouch. The main thing is that it doesn't matter what the percentages are, his pouch will function according to its plan.

The potential Crohn's diagnosis is just a head's up to not be too surprised if he develops chronic pouchitis, other small bowel disease, or perianal disease. If they happen, you just deal with it as it comes up. It may mean going on maintenance medication to control the disease. Worst case scenario is pouch removal.

Even without the Crohn's diagnosis, there is no guarantee that you won't have chronic pouch problems. Crohn's just increases the odds. Just like UC, Crohn's has a variable and unpredictable course, characterized by relapse and remission.

Jan

I have had a J-pouch for 10 years and two years ago biopsies positively indentified it as Crohns. I'm getting along just as well and haven't changed my meds, lifestyle, or anything. I recognize someday I may lose my pouch but at this point, don't even think about it. I would suggest you (your son) do as I do and move on and don't look for trouble.
Dave D

My mom was in your situation, very upset and confused. I'll never forget the day my surgeon told us that I had Crohn's. Of course, as time goes on you just accept it and pull up your boot straps and do the very best you can.
As others have stated, theres a 50/50 chance for pouch success. I'd definitely go forward with the plan you have. Take it as it goes. He may very well have no problems, or he may need a medication or two. I prepare myself with the thought that I may lose my pouch one day but I definitely don't fret over it.
I'm in school too. It CAN be done.
Good luck