ulcerative colitis , colectomy j-pouch surgery

Tomorrow will be my four year anniversary of kicking my colon to the the curb. I had the J pouch procedure and it was the best decision I made in regards to dealing with my UC.

The procedure is done in steps...2 or 3 depending on the surgeon and the health of the patient. (sometimes it's done in 1 step but that's usually reserved for cancer or FAP patients with no history of IBD and even then not a lot of surgeons like doing it in one step).

I had a two step procedure done laparoscopically. The first step was the removal of my colon and rectum and the temporary loop ileostomy made. Then I had four months to heal. After that time I had the takedown surgery (reversal of the ileostomy) and began using my new plumbing. It's a rough, intense surgery....I won't lie. I questioned myself a few times during that healing period! But it's truly been a God send. The pain from the surgery was always manageable. They do a great job in the hospital to make sure you are comfortable. So recovery time from start to finish for me was about 4.5 months. I was still able to do things in between the two steps but I didn't feel my best until after the second step was over.

I used the bathroom and average of 4-6x a day.(it's much different than going to the bathroom with a colon diseased or healthy....it's quick like urinating....just sit and empty) There is no urgency and I can hold it for quite a while if need be. I can eat what I want again. I have no diet restrictions. Some foods may bother my pouch more but nothing that would keep me from eating them. And I am off all medications. I love that one!

I was really sick before the surgery. I had severe pancolitis that didn't respond to meds. I really had no choice left but to do this. I fought it though for about two years. Glad I came around when I did because after the surgery my surgeon said my colon was on the verge of perforation. It was totally worn out and thin in spots.

Please let me know if you have any specific questions...I will be happy to try and help.

I've had my pouch for over 20 years and have to agree with suebear and ByeByeUC: no regrets. The decision was made without my consent (I was a minor) after all meds failed and I feel very strongly that it was the right one. The improvement in quality of life was noticeable almost immediately and still surprises me even now.

I'm getting reconnected tomorrow. So far I've been really happy with surgery, I feel better than I have in years...actually since I was dx'd with UC and even when I was in remission I still didn't feel as good as I feel now.

I wish I had surgery when I was first dx'd but I waited and tried all the meds and in the end I needed surgery anyways....I always knew that I should have surgery but I was too scared to have it but after having surgery I can say that I wish that I did it sooner. And surgery wasn't as bad as I expected but it is tough but well worth it.

Not all GIs will recommend surgery, I actually had my GI pushing me to have it for years, once he even sent a surgeon into my hospital room to discuss surgery with me. You don't need a GI's approval to have surgery but it is always nice to have.

There are also other medications that you can try like Cyclosporine or Vedolizumab but to me when I was on medication I never felt as good as I feel now without my colon.

Post Edited (ks1905) : 6/24/2014 8:29:53 AM (GMT-6)

I'd at least go for a consult with a surgeon, see who your GI recommends for J-pouch surgery in your area. The consult might be able to tell you if you'd need 2 or 3 steps and what to expect. I am happy that I had 3-steps, I was so sick that I don't know if I could have handled 2-steps.

thank you , i will do just that! im actuallly excited!!