Hi Animal Lover,

I am assuming that by “reversal”, you mean removal of your j pouch and going to an ileostomy. Once this is done, there’s no going back. You may want to get a second opinion, especially if something can be done to return your pouch to an acceptable level of performance. The Cleveland Clinic has doctors who specialize in dealing with difficult pouch problems.

If it turns out that your j pouch must go, you may want to consider the k pouch or closely related BCIR as alternatives to a conventional ileostomy. Both of these options avoid the need for an external bag with its associated issues. There is a significant amount of information for both of these procedures on the internet, and both have a high percentage of patient satisfaction. Selection of an option is a personal decision and is best made after doing your research and asking questions of your doctor(s). I selected the BCIR option and the surgery to remove my j pouch and create the BCIR was complex, but I had a full recovery and am very pleased with the results. I can do any activity I want, eat most foods, have no pain and sleep all night. I empty the pouch about 4 times a day at my convenience with a small plastic catheter. Best of luck to you!

Bill

I had my pouch removed a month ago and am wearing a bag. 

No regrets.  All the problems and pain I had is gone. 

As for the other two procedures.  Me I personally skipped them.  I didn't want my pouch in any form or be sticking a catheter in myself to empty.  I just wanted to be done with it. 

It was the right decision for me.  

Now this is my opinion.  My results.  I am 60...almost 60....and need to get on with my life now.  Not be trying this or that for the next couple years knowing deep down it wouldn't work. 

Like my pouch didn't.  Deep down I know  it wouldn't work right.  So I got rid of it.  And like I said.  All my problems vanished from day one after surgery.  I feel good now.  I feel my strength coming back.  I don't hurt... No burn... Not chained to a toilet and I sleep all night.  

Good luck. 

Richard. 

Hi Bill. So you have no issues with your BCIR? I had a j-pouch, now have had the BCIR for about 16 years, with all of it's issues....chronic pouchitis and pain, severe anemia and vitamin deficiencies and now a lot of pain for which they can find no source after many tests. I'm seriously considering the ileostomy.

Teresa

Hi Richard.

I'm 48 and I also want my life back. At first I had a j-pouch which didn't function well at all. Now I've had the BCIR and I just want my life back with no more inflammation. Are you having any issues with the ileostomy?

Teresa

Teresa, I’m sorry to hear about the problems you are having with your BCIR and that you are not in the majority who have had good outcomes. I see that you are new to this group and encourage you to sort through posts of others on this forum for suggestions that might improve your situation short of having more surgery. Some of the j pouch posts might be helpful, too. Other than pouchitis shortly after surgery (while pouch was expanding to its full size) and two minor blockages unrelated to the pouch itself, I have had no problems with my BCIR for almost three years that I have had it. Have you contacted the surgeon who did your BCIR for suggestions? Who did your surgery? Another thought is to get a complete workup at Cleveland Clinic or Mayo Clinic who deal with complex medical issues. If it were me, I would do everything possible to keep my pouch and consider an ileostomy as a last resort.

Your pain might not relate entirely to your BCIR, in which case going to an ileostomy would not eliminate this problem. Pouchitis is usually helped by antibiotics, probiotics and diet changes. If oral iron supplements are not helping your anemia, periodic IV infusions by your doctor should be considered. Iron and vitamin deficiencies will not be corrected by having an ileostomy.

Bill

Hi Bill.

I didn't explain myself very well. While I do have the anemia and vitamin issues, I can deal with that stuff. I've been getting shots and infusions for years. I'm not looking for a cure for that. As far as the pain, I just had a scope exam and the pouch looks pretty good except for a couple of ulcers. I've had years of pouchitis and know what that feels like too and can deal with that. This pain is different and so so much worse. I live in NJ close to NYC so I may see if I can find a different doc in there.

Thanks so much for your reply. I don't care about the appliance as much as getting rid of this pain and the chronic pouchitis. 

I'm glad yours is working well and hope your success continues.

Teresa