complicated surgery needed... Dr Deitz

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LisaTX USA

Hi,
I have had about 12 surgeries.. partial colectomy, total, j Pouch, fistula and sphincter repair, temp ileo, BCIR with J pouch removal, BCIR removal, fustula repair....
I had my latest surgery last year to try remove the last few feet of intestine, and fistulae and create a new iloe.... failed due to a frozen abdomen. My surgeon could not tell intestine from scar tissue; managed to remove one fistula, tried to remove the other, but could not. He says that I WILL NOT have any more surgeries due to a frozen abdomen. Now, nearly a year later, I still have 2 ostomy bags, intestinal bacteria overgrowth and low iron, I want to try again. My file has been sent to the Cleveland CLinic where Dr Dietz has suggested a Koch Pouch...? Dont think that is really an option. He is willing to create a new ileostomy. He doesn't think that the frozen abdomen, due to numerous surgeries and scar tissue, is a problem. I am delighted with his optimism, but concerned he is not being realistic. I do not want to end up worse than I am now. I heard he was conservative and worried that he has not reviewed my file fully.
I am wondering if anyone else has had complications in the past and if he was successful in treating them?
Thanks, Lisa

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Jan DollarModerator, RN, retired

I never heard of a frozen abdomen, and I do quite a bit of reading. But, from what you describe, it sounds like your abdominal organs are all "tied up" from adhesions. So much so, further surgery could damage your remaining organs when they try to release all those adhesions.

This sort of surgery would require the skill of someone quite experienced with complex adhesion release. My understanding is that the surgeons at the Cleveland Clinic colorectal department have pretty vast experience with all sorts of j-pouch complications. Surgeons who do not shy away from complicated cases are not fools, but are willing to do their best to find a solution for their patients. Yes, sometimes the results are not perfect and complications can occur, but they are experienced enough to know if it is worth attempting.

I would think that an in person consult, at least, would make sense.

Good luck!

Jan

6/22/1211:59 AM

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liz11Member

I might suggest you invest in a trip to Cleveland to meet Dr. Dietz in person and to review your situation. My surgeon at CC (who is not Dr. Dietz) is very conservative but also extremely experienced. He is frank about the pros and cons of each and every situation he has dealt with with me. I suspect these characteristics are common with many of the CC surgeons. Many of the CC colorectal surgeons deal with very complicated IBD and jpouch issues from araound that world that other doctors have given up on. I believe it would be well worth your time and money to spend a few days in Cleveland getting things investigated more before you make a decision.

6/22/124:09 PM

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vanessavyMember

If you had a BCIR then had it removed, I am not sure why you did though? Then the kpouch is pretty much the same thing... I believe you have to have at least 12 feet of small bowel left to make a continent ileo. CC is the best though so go and see. I have had surgeons tell me they could not do this and that when I was consulting. then I went to one that was similar to perhaps yours you are considering, suggested he could do certain surgeries and that he didn't take the word of anyone so he looked for himself. Glad he did, I actually had cancer and nobody else caught it, just said I had FAP. If I didn't have cancer though he would have been able to do the IRA like he thought when everyone else said I couldn't have it. So put some trust in the GOOD doctors but stay realistic.

6/22/124:35 PM

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