Surgery fears - questioning my decision - pouch removal

My thoughts are to make sure that there is no “reasonable” chance that your j pouch could function in an acceptable way before deciding to have it removed.  Once it’s gone, there is no turning back.  In my case, significant medical conditions made pouch removal necessary.  I was advised to get an end ileostomy, which I did not want due to its quality of life issues.

I knew that there were two alternatives to an ileostomy available in the USA.  I updated my knowledge about the k pouch and the BCIR on the internet.  If you think one of these procedures might be an option for you, be sure to mention it when you meet with your surgeon.  You should also discuss your fears of possible worse outcomes from surgery, which you did not describe in your post. It is my understanding that there is at least one surgeon in Australia who does k pouches, but no one there does the BCIR. 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 option 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.  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 hope things work out well with whatever you decide to do.

Bill

I had mine removed a couple years ago and now have what they call a permanent ileostomy 

But. My surgeon left my rear end intact in the event I wanted to try another pouch. So removal and permanent is really not turning back is not true. As long as the rear end is kept intact.  

I'm happy with what I have and could try for another pouch.  But I am not going to. Removal of my pouch was the easiest of all my surgeries. I had thoughts like you and fought in my mind to the last minute.  We all do that have it done. 

Bring up leaving the rectum there and intact.  (rectal cuff too) Mine is and it causes no problems.   

Good luck. 

Richard  

I was first diverted to a permanent ileostomy and 6 months later had the surgery to remove my j-pouch and everything else leaving me with a barbie butt.  I don't regret having the surgeries.  I had no thoughts of every trying a j-pouch again.  My pouch failed for many reasons.  I am better with the ileo.  

Like Bill I had an abdomen full of adhesions from my earlier open surgeries.  Between these 2 surgeries discussed above my surgeon spent 8 hours lysing adhesions.  I had an open hysterectomy 14 years before the 2 open j-pouch/colonectomy surgeries. That is a surgery that i think you are also contemplating.  (Excuse me if I have you mixed up with someone else.) 

In my case the removal surgery was a life saver.  I was having so many problems with my j-pouch I was practically home bound. 

I found the healing better than the first j-pouch/colonectomy.  It took months for the "back door" to feel normal but it wasn't a big deal.  I had waffle like cushions that I sat on for months.  If I didn't have a nice cushioned chair to sit on I sat on one cheek   It was much easier to deal with than my butt burn.

Please let us know what you decide or if you have any other questions.  

Good Luck 

HI all for your kind support, Yes Bill there is no chance I would risk going back to a jpouch - I had such a bad quality of life with it, and now that it looks like I have crohns, that's probably why (pouchitis, fistulas, abcess, stricture). So I wouldn't be bothered trying to go back. 

I've also had an end ileo. like you Richard for 8 years now so I am well used to managing that side of it. Partly why i don't think i could be bothered to learn the ropes of another kind of pouch. But I really hadn't thought of that option to leave the rectum / bottom in tact - they must have to sew it up at some point - just higher up? 

Thanks Marie - yes that's me - my surgeon also recommends me doing a hysterectomy simultaneously as my adhesions are so bad like most of us - he doesn't want me to risk needing any more surgery. I have a bunch of gyno issues so in some ways i makes sense. I'm just nervous about surgical menopause. Id rather no have to deal with that - but maybe he can salvage an ovary. 

Yes. They sew it from the inside. So you still have the short canal and everything in place. And skipping that part of removal makes recovery quick. I was back to work in 8 weeks. Could have gone back I  6 weeks easily but I took extra time.

Richard  

P. S. 

I didn't know she was going to leave it in place. But I'm ok with her decision of doing so. And no. I won't be trying for any kind of pouch.  The end was a new beginning.  I'm comfortable with it.

I'll be 62 I  a few months. Vanity has left me behind. As long as I have my health back. 

Thanks Richard, yes  new beginning sounds very good indeed! 

I thought if they removed the j-pouch they had to remove the anal stump as well.  Still learning.

Yep. Me too! 

Just chiming in as your symptoms for the removal of your pouch sound a lot like mine...

If cuffitis is a significant problem (me too) it will likely be recommended that you have that removed as well. It makes no sense to keep the tissue with issues. Likewise, even the remaining diverted pouch can still be an unnecessary site to leave intact for inflammation.

Given your experience with arthritis.... if it’s rheumatoid (like mine) and related to systemic auto-immune inflammation, then that is also a good reason to have everything removed. I was included in a study at CC several years ago when trying to make the decision to fix or excise. Dr Shen and a geneticist there were working together on identifing poor j pouch candidates (as they see an over abundance of failure/removal cases there.) I ended up having the same markers as others whom they identified as being part of this problematic subgroup. They had also mentioned that chronic pouchitis and cuffitis as well as inflammation outside the intestines (including fistulas) were the other clues as to possibly being a part of this subgroup.

Of course, I, and I think everyone here, can totally understand your hesitance — it’s still a big decision and it’s diffucult to “volunteer” for surgery no matter how much it is recommended! But I never regret it for a minute as life post-jpouch is so much better than it was with it. Just keep in mind you may still experience the arthritis or other extra-intestinal inflammation.

THanks JenJen, did you have your pouch removed?  Do you still have arthritis now?