Crohn's Disease and J-Pouch

My daughter was diagnosed with crohn's colitis by what I feel is an incompetent doctor. We fired him and went to another GI whom we love. Based on her symptoms and the diagnosis the doctor kept the diagnosis but now after viewing her MRE he is saying he would have called UC instead. It is also very upsetting that she is requiring surgery now to completely remove her colon. Is there a chance to have a jpouch or because of the CD diagnosis they won't do it?
Original Post
Hi GrumpyMama,
I am so sorry for your daughter.
When you have UC (and not Crohns) they often offer a j pouch. They can do it in either 1, 2 or 3 steps depending on the surgeon and on her condition pre surgery.
Basically they remove the sick colon and then with a healthy piece of intestine they sew together a pouch that they attach to a piece of rectum that they retained (usually just a few inches of it).
Most often they divert the small intestine to an outside stoma (a loop ileostomy) until the pouch heals and can be hooked up to the small intestine. This usually is done in 3-9 months but times vary. Some surgeons do it all at once while others like to take their time.
It usually takes the body about a full year to get accustomed to its new plumbing and requires an adaptation period or about 3months where she will learn how her bowels function and what she can and cannot eat while she is healing.
Once healed she can usually have a pretty normal life with some mild dietary restrictions.
When there is a diagnosis of Crohns they often refuse to do the pouch because Crohns engages the small intestine too and can cause further complications with a j pouch.
I hope this helps you
Don't hesitate to ask any other questions that you may have
Sharon
My son had been given different diagnoses over the years - when it came time for the colon to go and the most recent GI said Crohn's, my son insisted that they leave some of the rectum "just in case". Two years later he went to Cleveland Clinic and they reviewed all history, path reports, slides, etc and changed his diagnosis to "indeterminate" and J-pouch surgery followed.

The son of a friend had also been given different diagnoses by different doctors in Texas. He went up to Mayo Clinic for a week and they concluded it was UC and recommended a surgeon in his home town.

So if there is any doubt, you may want to take her to a hospital that specializes in this for a tie-breaker.

Best of Luck.
Our GI clinic at Children's Mercy in Kansas City maintains that diagnosing IBD in children is tricky and often unreliable. They tell stories of kids being diagnosed with UC, and then a couple years later being diagnosed with CD. Apparently, as kids with IBD grow, the disease can apparently present itself in different ways. They like to be as sure as possible of a diagnosis with kids before proceeding with j-pouch surgery.

I was always diagnosed as a kid with atypical IBD - they would always tell me it wasn't CD, but that it didn't present as typical UC either. I didn't really understand at the time. For my daughter, they ran every test they could to give them a level of confidence that she had UC. So far, so good for her and her 3 1/2 year old j-pouch Smiler

Steve

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