J-pouch removal due to multiple health issues

I don't know if they're connected or not and neither do my doctors, but I've had 3 bouts of pulmonary emboli occurring in both lungs. No long airplane flights before the PE's and no clots in my legs. I think that Jan Dollar mentioned that UC and PE's could possibly be linked. So it's blood thinners for me now.

If you are talking about lung problems that cause coughing, I experienced that once too. They couldn't find a cause and it finally went away - after a long, long time. But we had been putting down a layer of redwood mulch in the garden and redwood is notoriously irritating and the coughing started a short while after that. So it may have been environmental and not UC related.

kathy

I have been diagnoses with Bronchiectasis. I cough and produce mucus constantly. It is very difficult to breath. My lungs are only functioning at 82%. My pulmo Dr says reflux and/or UC may be causing this. Surgeon will not consider reflux surgery because he says it will negatively effect my j-pouch. I am so confused and upset. I have two young children and they have never seen me when I was well.

A friend of mine had UC, and now has the bronchiectasis too. Maggie Mae, sorry you're going through this - it sounds miserable.

It is miserable but I have hope. Can anyone tell me the pros and cons related to having the j-pouch removed and going to a perm ostomy?

I had a perm ileo done at age 30 and pouch out at 31. For me it was the best decision ever. Cleared up all kinds of issues - mostly neurological- that I was having. Had two babies after pouch removal. Living normal wonderful life with ileo.

As for the pros and cons - it is major big deal surgery. Not sure how your lung function would come into play. The surgery is actually bigger than the pouch creation because blood vessels and capillaries attach to the pouch making extraction tricky. However, I recovered faster from this surgery than any other because I believe the pouch was making me sick - once it came out my body bounced back.

All that said, not a decision to make lightly. You would need to find out how your breathing would be managed and what possible issues there would be. You could also consider just disconnecting the pouch - much less surgery - more like take down - and see if that helps. Works foursome people but did not work for me.

Feel free to ask questions - I know how hard it is to make this choice.

The primary question I would have is whether pouch removal would have any serious impact on your respiratory disease. I have read that these sorts of things can have an independent course, unrelated to bowel disease activity, like ankylosing spondylitis. So, be sure to get that question answered. But, if your pouch is causing you constant grief, then removal is worth it on that alone.

Jan

Thanks for all the info. I also believe my pouch is making me sick. I cannot prove or explain it. Just a gut feeling.

It very well could be making you sick. You certainly would not be the first one with a failed pouch or a pouch that causes too many other problems. It is rare, but not unheard of. Unfortunately, it is difficult to know for sure. In the long run, I think your gut instincts are probably true.

Jan

I gave up my j-pouch in '09 and went to an end ileo...I have asthema and chronic bronchitis...never had any docs tell me they were related...