I am a 42 year old guy who had my jpouch surgeries five years ago. For the past two years, I have been having pouchitis, treat it with antibiotics, feel better and start the process all over again. The surgeon did a sigmoid a couple of months ago and found a fistula and an abscess that formed along the staple line at the base of the pouch leading to the rectum. It wasn't there two years ago according to the CT scan I had in the ER when I was treated for dehydration. I am scheduled for surgery on June 9th for a temporary ostomy while they drain the abscess and put in a fibron plug. I am thinking that even if this heals, and that is a 50/50 shot, that I will still be facing chronic pouchitis. Does it seem drastic to consider getting it permanent? Is there ways of dealing with it when doing things like taking my son swimming? What is it like living with this adjustment?

I had chronic pouchitis for 3 1/2 years and opted to return to an ostomy rather than continue to take antibiotics, restrict my diet and limit my life activities.

I live a MUCH fuller life with my ostomy. Swimming is an absolute non issue, I do it every chance I get, including taking my 3 year old to lessons at the Y. Also use hot tubs any chance I get.

I was 30 when I chose the perm ostomy and 31 1/2 when I had my pouch removed making hte ostomy REALLY permanent! COuldn't be happier and I have carried two babies since the pouch removal. Perfectly healthy, take no meds, eat everything, swim, kayak, hike, play wiht my kids, anything I want.

The adjustment was fairly easy for me because it was my choice, I healed quickly from my surgery (pouch removal one) and without complications. I felt great the minute the pouch came out so it was easy to adjust to feeling great!

Since you are having a temp ostomy done but thinking you might keep it, make sure you get an end ileo. They are much easier to care for, have lower output and work better for the long term.

Let me know if you have questions.

I'm 25 and had J-pouch surgery almost 2 years ago. I have not been reconnected yet because of fistula and a pouch defect. I am hoping to get a permanent ostomy myself. I think it would be worth it for you too. Once I got past the year of post-surgery infections and things, I have felt great. No worries. Of course the bag isn't the most attractive sight but it has provided me with the ability to return to "normal." good luck!

I just had my j-pouch disconnected 4 weeks ago. I feel fabulous! I had pouchitis almost from day one. Then developed fistulas and was rediagnosed with Crohn's. What a huge difference having my ostomy back. I feel like I got my life back. I can't think of anything I would think twice about doing. I had a rough time with the surgery. But it was worth not taking a million antibiotics everyday. The only drug I'm still on is Humira once every two weeks, to keep the Crohn's from flaring. I have had no side effects from the Humira.
Best of luck with whatever you decide to do!

I'm also going to add my name to the list of happy campers. Getting rid of my j-pouch was the best decision I've ever made. Ok, I know I still get occasional problems, but I am now rid of all those horrible "butt" problems. No more perianal ulcers, abcesses, fissure or pouchitis. No more feeling so exhausted that every little task was an effort. Life with Wee Willie is 100% better than it ever was with the j-pouch.

Good luck with whatever decision you make.

Take care.

Shell

I just got back from being in florida for 3 weeks and, with Jill's encouragement, I swam with my 3 and 5 year old without any problem! It was by far my biggest fear regarding the ostomy, but I did it and I'll do it again this summer. Being male you should have an easier time finding a swim suit too!

I'm bagging it permanently now. I had all the issues before with the J-Pouch and I have my life back now. I eat and do what I want now. I have not ventured into the water yet, but suspect I will soon. Good luck with your decision!

quote:

Orville

Orville,
My story is very similar to JillM's story.

I got my permanent ileostomy 1 year ago this past March, and it's a night and day difference.

I developed Crohn's disease in the pouch, after suffering for 3 years with that miserable thing (j-pouch)- sleepless nights, accidents almost EVERY night, emergency stops on the side of the road, butt-burn from hell, etc.

Also, I second the suggestion to make sure you get an end ileostomy, whether or not it's a temp or permanent- MUCH easier to manage!

//Todd

Adding myself to this list to let you know I had my jpouch disconnected last July and it's the best thing I could have done...I had daily accidents and was mainly housebound..
I do however have a loop ileostomy instead of the end...which really gives me no problems-I find it just as easy to manage with only emptying 3 or 4 times a day!
My surgeon was not one for giving an end ileostomy when leaving the jpouch in...He gave his reasons,and I didn't question them-just wanted relief from the jpouch and didn't care if it was end' or loop'-
The adjustment for me was pretty easy because I knew it's what I needed to do!
Good Luck in your decision Orville!
Char.....

I want to thank everyone for the replies I have gotten. I am new to this forum and I haven't met many people in my situation. You have all given me plenty to thank about. I had a ostomy for about 8 weeks before my takedown when I first got my pouch. I wasn't happy about it then, but I also thought the jpouch was the answer to my misery. Seeing that people live with ostomies everyday helps me in my decision.