Five years ago, I had to make the same decision about my j pouch. Fortunately, I knew that there were two alternatives to an ileostomy since this was a procedure that I did not want to have.  I updated my knowledge about the k pouch and the BCIR on the internet and made contacts with surgeons to see if I was a candidate for it. These procedures are not suitable or the best choice for some people.  Fortunately, I was eligible and opted to get a BCIR.  This turned out to be the best decision for me.

Removal of a j pouch can be a very involved procedure.  In my case, my surgeon spent almost two hours lysing very dense adhesions that had developed after earlier surgeries.  Most people do not have as many as I did. He did a great job of sewing up my bottom, and it healed very quickly with no complications.  The remainder of the surgery went well and I was in the hospital for the customary 21 days before going home.  For a conventional ileostomy, the hospital stay is usually shorter. Three months after surgery, I was able to do most of the things that I enjoy.  Routine bloodwork showed that I had low iron and B-12 levels.  This has been corrected by daily oral supplements.  Otherwise, I am completely off of medications.

With the exception of the addition of an internal pouch, your surgery should be much like mine. Your life will be much improved after your problematic j pouch is gone.  I mention the k pouch and BCIR options for those reading this post who might not be aware of these procedures and who have significant concerns about getting a conventional ileostomy.  My choice of the BCIR has given me a very good quality of life and allowed me to avoid the issues I would have had with the bag.  I have no leakage or skin irritation problems and my annual supply cost is under $200.

I do not mean this post to be a “sales pitch” for the BCIR, but it may be helpful for those who may not be aware that these alternative procedures exist. I do know of people who have opted for a conventional ileostomy and are satisfied with the results.  Please send me a PM if you have any questions, and best of luck

Bill

Bill,

I can’t believe the BCIR is so successful! Good to hear. I’d guess that since you basically drain an internal stoma, that build up would happen and you would leak from the small external hole that you drain. 

Mite amazing what physicians can develop. It’s crazy because in 10+ years they will probably have procedures better than anything we’ve ever experienced, and people will say: “Can you believe they used do J-pouches and BCIR!”

Thanks Bill, I talked with Dr. Schiller in LA about the BCIR and while I am a candidate for the surgery - He feels will all the problem of  chronic pouchitis it could show up again and cause problems with either a K-pouch or BCIR and I could loose two more feet of bowel and have to have additional surgery.

I've decided in my case that the risk is too great, with my history. 

Thanks,

Carolyn

I had to make the same decision to have my j-pouch removed.  I wish I'd made it sooner.  I am off all medications I was taking except I still take hydrocodone for adhesion pain.  That is minimal compared to what I took before.

My surgeon too spent 5 hours lysing my internal adhesions during the 8 hour surgery.  The permanent ileo is on the left side whereas the temp ileo had been on the right.  I was in the hospital 5-6 days afterwards and the recovery was much easier than after colonectomy/j-pouch construction surgery.

Recovery from the BarbieButt took months but wasn't a big deal as I sat on a waffle like cushion.  I had one in my car and another with me at all times. 

It isn't easy getting use to and the care involved with an ileostomy but it wasn't as difficult as what I encountered with my temp ileo.  

The freedom I gained after the surgery was immense. 

If you have any questions please ask.

Good Luck!