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7 replies

Jpouch Removal Surgery

CC colonless commodoreMember
I know there have been some discussions on this topic, but I would love to read some recent accounts if anyone has any experience with this.

A little background: I have Crohn's, and only had it in my large intestine so my surgeon was eager to try the jpouch on me. I was eager too, as I was about to begin grad school and was not too keen of the ileostomy at the time (2012). I had the first surgery and had the ileostomy for 6 months. Life was great. I had zero issues and did not mind the ileostomy at all. I had the takedown during winter break, and by January 13' I had developed Crohn's in the pouch. In March of 2013 we did a diverting ileostomy. However, this helped the pouch clear up but the ileum above the ileostomy became inflamed. All medicines and experimental treatments failed and I had a bowel resection in June, another one in September, December, January 14' and in March of this year. In March my surgeon said let's reattach the pouch to see if that helps to calm things down around the ileostomy. While it has and while I am still experimenting with TPN and other drugs, my pouch is now just as inflamed as before. So in October I will have the pouch removed, my bottom sewed up and the ileostomy made permanent. Any advice on this surgery (i.e recovery, hospital stay, success, etc.) would be helpful! I am trying to get into Medical School and I know my life will be much more conducive with the ileostomy in regards to bathroom trips, urgency, diet, etc.

Thank you!
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ElmerFuddElmerFuddMember
I am surprised no one has responded. There are several folks who have done this surgery and can help with advice and pointers. Most all say this is not an easy surgery and recovery.

BUMP!

Also, I am very surprised you had a known Crohn's disease (even if only in the colon) and your doctor was eager to do j-pouch surgery. My understanding is that an ileal pouch is contraindicated when you have a certain Crohn's diagnosis. I would be holding my doctor accountable for his / her poor judgment!

Steve
Scott FScott FMember
A J-pouch can be a reasonable choice for some folks with Crohn's disease. It depends on the symptoms and the patient's expectations, and not all surgeons or centers will do it. The failure rate is higher with Crohn's Disease than with UC.

My diagnosis was (roughly) "probable Crohn's" when I had my 1-step J-pouch surgery over ten years ago. It was a very difficult decision, and a couple of surgeons turned me down. It was also the best healthcare decision of my life. Heck, I just came back from a weekend of scuba diving!

Some J-pouches will fail, and it's miserable when they do. That doesn't mean that the attempt represents poor judgement, assuming everyone's clear on the risks.
J JillMMember
Just saw this and am on vacation with my family in Florida so can't do a long response now...feel free to pm me if you want more details, but here's the short story.

Jpouch in 1998 after 6 mths flare of UC (my first). 3 1\2 years chronic pouchitis and I had pouch disconnected. Developed new issues so had the pouch out 2003). Perfectly healthy and happy since. Though the surgery is a big one, my body was clearly much happier without the pouch and I pretty much sailed through it. I did use a mind body program prior to and during surgery and I do feel that helped.

Let me know if you have questions!
LHettiLHettiMember
I'm sorry for your struggles!

My story is in the ostomy section. I just had my jpouch out/barbie butt this April. Four months this week, in fact. I'm doing really well. This surgery was a tough one as (for me) it was a full abdominal incision AND bottom sutures that needed to heal. I was told 6-8 weeks recovery and I would recommend that. 5-7 days in the hospital, 4 weeks of pain/pain meds (no driving, no lifting)and on the couch, maybe by 6 weeks be up and about. By 8 weeks I was really ready to be back to normal life! I as healthy as I could be going in (3x a week at the gym, eating GAPS/SCD/no processed foods) and I think that only helped also. I had help during my recovery, too. I didn't shop or lift a grocery bag for 8 weeks! I was out walking each day, but wasn't back to the gym for almost 3 months. I ate a lot of protein to heal, too.

Best wishes on a big decision!
Laura
CC colonless commodoreMember
Thank you all for your replies so far! The surgery couldn't come soon enough, but I know it will be November before having it, as my surgeon and GI both want me as healthy as possible before having it. To those that have the barbie butt, have any of you been able to ride a bike. I am an avid cyclist and road bike often. Once this area heals, how does it feel riding a bike? Thanks again for all the feedback, thus far!
LHettiLHettiMember
I can't say that I've been back on a bike, but I can't imagine it hurting at all. I have zero pain/discomfort in my barbie butt since it healed. I used to not be able to sit comfortably because I had RV fistulas and Crohn's of the cuff (they stop calling it cuffitis in my case). Now I sit on anything and never think twice!

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