J pouch versus permanent ileostomy

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sss111858
Posts: 36
Joined: 2013-06-05 09:08:38

Re: J pouch versus permanent ileostomy

Post by sss111858 »

I know I am late to this party as this thread was so long ago, but I wonder how things turned out! Lori...your story is so similar to mine that it is scary!
roadshow
Posts: 10
Joined: 2013-08-12 13:17:02

Re: J pouch versus permanent ileostomy

Post by roadshow »

I am in a similar place. I had my temporary Ileostomy done this last December. I had many complications, including an Ileus as well as 2 abscesses. I was in the hospital almost a month, and out of work for another two months. My J-Pouch has not been playing very nice, so I still have no reversal scheduled. I have had ulcers and bleeding and mucous from the pouch, and My doctor says it looks like Crohns-Colitis. But all of the test she has done are saying I tested negative. I have been through Cat-Scans, Pouch Studies, and and Oscopy tests. I am being treated with Prednisone (I thought I was done with that), and VSL#3. I'm not sure it's helping much. The rest of my intestine seems okay except for the pouch. Doctor says it doesn't look like Pouchitis or any known infection. So, I'm not sure what's going on. I also have high output and use a high-output pouch. I wonder if the J-Pouch will be right for me with all of the issues?
In two weeks I am going for another Oscopy to see if I am healed enough to schedule surgery.

I have also had issues with my loop ileostomy. I have to wear a convex wafer because it's a shorty. I had some pressure ulcers and a fungal infection. It is getting better since I switched wafers and used a product called Medi-Honey (amazing stuff) to heal the ulcers.

Ideally, I would like the doctor to tell me that the J-Pouch looks good and to schedule surgery, but I am preparing myself for the possibility that it isn't viable. If it can't be done, I will be disappointed. But, if I have to get a permanent Ileostomy, I would definitely want it made longer, so that I could wear a flat wafer, and have it lowered about an inch. Right now its right where a belt would cover it when wearing dress pants.

Does anyone have any advice?
sonhascolitis
Posts: 1
Joined: 2016-07-24 16:43:42

Re: J pouch versus permanent ileostomy

Post by sonhascolitis »

My son is lying in a hospital bed trying to research j pouch vs ostomy... This is such a horrible thing for a 20 year old, active boy. :( He's considering ostomy because he wants as best chance for not having complications and being once and for all done with UC.... Would you all agree that if that is his goal, he's on the right track? Also, what if he did get the pouch, and it failed... How hard to change to ostomy and what are the complications? Sorry, i am his dad and have a million questions!
BillV
Posts: 120
Joined: 2013-11-11 21:24:03

Re: J pouch versus permanent ileostomy

Post by BillV »

I’m sorry to learn what your son is facing at such a young age. Decision time for me came when I was 35 and I was fortunate to learn that the J pouch and k pouch were options that did not require an external bag. My surgeon at Mayo Clinic recommended the j pouch and I became one of the first to get it in 1983. Although I had a high frequency for bathroom use and anal irritation, I felt that adaptation to these problems was better than going on the bag. In the 30 years I had the j pouch, I went alpine skiing in the Rockies, participated in equestrian competitions, traveled internationally, had a full-time job and had an excellent love life. Three years ago, I had to have the pouch removed due to recurrent high grade dysplasia in the rectal cuff and opted to get a BCIR (similar to a k pouch) since I did not want an ileostomy with its associated issues. The surgery went very well and I now have a quality of life close to what I had before my first surgery.

In my honest opinion, I would opt for the j pouch since it had a high success rate and preserves the use of the anal sphincter. I would encourage you to visit the J Pouch Group forum (www.j-pouch.org) to view many informative posts and also to post yourself with any questions you have about any of the available surgical options. This forum also has a section entitled “K Pouch Korner” for posts on the k pouch and BCIR. Please keep in mind that people with well-functioning procedures do not visit these forums often and their purpose is to help people who are having medical problems. If your son opts for a j pouch, he can convert to an end ileostomy, k pouch or a BCIR if the j pouch does not work out for him. Best of luck with whatever option your son elects.
Bill
Gin3737
Posts: 1
Joined: 2017-05-11 13:49:10

J pouch removal

Post by Gin3737 »

Hello, I just registered and am new to the UOAA forum but not new at all to IBD issues. I was diagnosed with UC at age 19, had my entire colon removed with a j-pouch at age 28. What followed after the total abdominal colectomy with j-pouch surgery, was being opened 6 months later for peritonitis, and them one month later for a small bowel obstruction. I was very sick and needless to say the surgery didn't go as we'd planned and the j-pouch has never behaved as it should. I've had chronic pouchits now for 20 years and been on all kinds of medications. Remicaide induced Lupus which has now resolved. Humira did nothing and now I am on Entyvio. Like many stories I've read, my GI doctor thinks it's been Crohn's all along but apparently it's very difficult to differentiate pouchitis and Crohn's. The aphthous ulcers never clear up out of the pouch and it empties 10 -15 times a day.

Since the very first surgery didn't go all that great I'd always say I'd never have surgery again unless I was dying BUT I have been thinking of having the j-pouch removed and an end ileostomy now for a solid 4 years and my GI doctor wants me to have out as well. I've had some many other issues now linked to IBD, such as arthritis, anemia of chronic disease, malnutrition which has led to severe weight loss at times resulting in a spontaneous pneumothorax.

Having an ileostomy doesn't bother me as much as just having surgery again, but I feel like for me the j-pouch has really robbed me of joy and living my life these last 4 years. I'm so tired. I just had a couple of units of blood a few weeks ago and have to see a hematologist for an iron infusion.

As I type this I can't believe I've lived this long with the j-pouch. Guess i would like others to share about the actual surgery, recovery time, and getting use to life with an end ileostomy. I realize this is a very personal journey because even tthose of us with IBD have the same disease it can present so differently but I would appreciate any information anyone can share.

Ginny
pzzzzs
Posts: 3
Joined: 2020-04-14 18:50:42

Re: J-Pouch versus Permanent Ileostomy

Post by pzzzzs »

Hello Everyone. I am a 60 year-old male and after approximately 3 years of severe chronic ulcerative colitis and failing on 6 or 7 different drugs, my entire colon was removed. I am now three months post-surgery with my ileostomy which is apparently Stage 1 of a three stage procedure called a "Total Proctocolectomy with J-Pouch Reconstruction". I am concerned about the future 2 stages, and I was hoping to talk to someone who has been through the 3 stages of the procedure and can tell me what I might expect. Particularly, anyone who has been living with the results for any period of time. I'm hoping to hear experiences or get answers to questions such as:

How many bowel movements a day do you have? Has it decreased over time? Can you control them (ie. get the sensation with enough time to find a toilet)? Or do you have to wear adult diapers? Has that improved over time? Do you feel like your quality of life has improved measurably beyond life with an ileostomy? Things like that.
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