UC to J-Pouch Story

Most FAQs: J-Pouch or Perm Ileo

Posted by Megan on June 20, 2008

People often ask how did Mark decide to have a J-pouch or Permanent Ileostomy?  And people often ask this question because we are told there is a high risk of complications, long recovery time, etc…But what we think is that this is a really complex question because there are so many factors weighing in, so obviously your surgeon is the best one to talk with about this.  Nonetheless, if you look over Mark’s journal you’ll see he didn’t miss that much work, we document all his timelines of when he got back to work etc.  And he had no real complications.  Where on the flipside there are some people who have a really rough recovery.  You must do your research and understand the good and the bad 100%.  People have complications, and we learned that looking and getting support in this process at www.jpouch.org.  It is so important that you understand Mark’s journey is only 1 way the surgery and recovery can go, so here are some resources to get you started making a fully educated choice:


(1) Here is what Patients and family say about the choice:  Jpouch vs Ileostomy 

(2) Here is the Medical Reasoning from CCFA  by — Linda Wasmer Andrews, Dec 2005:

“Which is Better: IPAA or Ileostomy?

Today, an IPAA is the procedure of choice for many ulcerative colitis patients who need a proctocolectomy. The big advantage of an IPAA is that it allows people to keep having bowel movements through the anus. Typically, they defecate about six times a day, and the stool has a soft, putty-like texture. On the downside, problems sometimes develop with the pouch. One possible complication is pouchitis, an inflammation of the pouch that can cause diarrhea and abdominal cramps as well as whole-body symptoms, such as fever, dehydration, and joint pain. The inflammation is treated with antibiotics.

Another potential complication of an IPAA is bowel obstruction, or blockage, which leads to crampy abdominal pain with nausea and vomiting. This problem can usually be treated with bowel rest and intravenous fluids. However, about one-third of people who develop a bowel obstruction need surgery to correct it. Also, in 8% to 10% of people who get an IPAA, the pouch doesn’t function properly and has to be removed. When this happens, surgical conversion to an ileostomy is necessary.

An IPAA isn’t right for everyone. A permanent ileostomy may be the best choice right from the outset for some people with ulcerative colitis, such as those who have low rectal cancer or an anal muscle that doesn’t work. It turns out to be the only option for people with Crohn’s disease who have their colon removed. In such cases, it’s good to know that people can lead long, active, fulfilling lives with an ileostomy, too. “It’s the difference between sitting down to have a bowel movement and standing up to have one,” says Dr. Rafferty. That’s no trivial distinction when you’ve been having bowel movements the same way all your life, but many people who have been through it say that the initial adjustment wasn’t as tough as they had feared.

Here is a Video that is really well done that talks about making the decision for surgery, and her two step surgery is shown and discussed.  Technical and emotional are both addressed.  Really Recommend to Watch!


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