20 years, 13 surgeries and now I think it's time for a permanent ostomy. I've had a good run...I had surgery two years ago to remove adhesions but they are back and rather than waiting till emergency surgery is my only option, I am trying to get in Mayo or Cleveland. Pro's Cons? I heard Cleveland is all semi-private rooms...is that true? Maybe that shouldn't be a big concern but if I'm going to pay that much and travel that far I'd sure like a private room for recovery...
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Hi there - it sounds like you are peace with your decision and that is what matters (as well as the surgical input). When I was at the Cleveland Clinic for my surgeries, I was in a semi-private room, yes. Sometimes I had a roommate, sometimes I didn't. The Digestive Disease Institute is wonderful and the Stoma nurses are fantastic. I think the Clinic is a great option. I don't know about Mayo, but I know they are #1 with Digestive Diseases (Clinic is #2 I believe) so I think you are in good hands either way. All the best to you and your surgery.
A permanent ileostomy can solve a variety of issues, but it won't do a darn thing for adhesions. I hope you've got some other reason to do it.
Hi Olive Oil,
I’m sorry to hear about the problems you have been having with your pouch. I don’t know about the current room accommodations at either Mayo or Cleveland, but the main consideration is the level of care you get there.
Three years ago, I had to have my j pouch removed and I strongly wanted to avoid having an ileostomy. I was fortunate to find Dr. Ernest Rhenke in St. Petersburg, FL who gave me a BCIR, a procedure that does not require having an external bag with its associated issues. Dr. Rhenke practices at the Palms of Pasadena Hospital and all the rooms in the BCIR unit are private and there is a pull-out bed for a friend or relative to stay with you during your hospital stay. The nursing care there is excellent. In my case, my j pouch had been in place for 30 years and I had numerous adhesions (that had not caused any problems) that extended the length of my surgery by a couple of hours. Everything turned out well and I now enjoy an excellent quality of life.
I would encourage you to thoroughly research your options on the internet. Dr. Rehnke has an excellent website (www.bcir.com) on the BCIR. Another similar option is the k pouch which is performed at the Cleveland Clinic and a few other locations.
Bill
I have Crohn's and chronic problems with my pouch so it's the a two for one. I will have adhesions removed and have an ostomy at the same time.
The end is really not as bad.... in fact. Let me put it this way. It's all good. The one thing everyone tries to avoid I have. And it's pretty good compared.... and I can compare...to suffering with no end in sight.
Good luck. You sound prepared. I hope you have it as good as I did when you get over to this side. It can be wonderful.
Just another way to poop.
Richard.