Hi Everyone,
So if you look at my previous posts, you'll be able to see my previous history of mishaps.

Brief version:
Colon perforated during colonoscopy. Emergency surgery 7/97 - temp ileostomy.
12/97 - takedown/j-pouch
J-pouch prolapsed, lived with prolapse for about 11 years, had "corrective" surgery 2/09
Worked for about a month, then J-pouch prolaped once again; surgery = failure

Now, I'm at a point where my j-pouch and prolapse is getting worse and worse. The prolapse itself is now probably 4-6 inches long (it's very long), and I HAVE to strain beyond belief to empty. Sometimes my pouch prolapses so far that it won't go back up, and I have to manually push it up with my hand.

I consulted my surgeon and had another "corrective" surgery planned for 12/09, but after a MRI Defecography, it showed that I had damage to my pelvic floor muscles, and my surgeon wasn't sure a correction would fix me.

Now, due to my severe straining, I need to thrust myself down repeatedly on the toilet bowl, which has caused severe back pain. I'm sure if this continues, it will result in a messed up back for the future. I've been currently seeing a chiropractor for the back pain.

Now I'm at a point where something should probably be done ASAP. I want to here ALL other options EXCEPT for a permanent ileo.

I'm very interested in K-pouches, BCIR, etc. What is the difference between them, who is the best to get them done by, what would people recommend for me, etc. Also, which is easier to empty in public? Which has more complications? ANY and ALL info on other options and recommendations would be greatly appreciated.

As you can tell, I've never been happy with anything I've ever had, as nothing has every gone smoothly/worked out. Please help!!!

-Mike

Mike....hopefully I did this correctly and here you have a fairly current list of surgeons. Dr. Launer has retired.
The best way to gain info is to read through this forum. There is so much good info. You will hear about some of the issues we have as well.
But PLEASE remember, we are a very small sampling of continent ostomates. There are so many more who are having so much fun (we are too )that they do not have the time or are not inclined to visit here.
Living in Ct there are a few excellent surgeons in NY and Cleveland Clinic isn't that far.The surgeon you choose will tell you what the best options are for you. BCIR/Kock/Tpouch empty the same way.You get used to emptying in public.You will always have to carry a catheter/syringe/lube/pads (at least I do). Some foods will be fine, some won't...just like a jpouch.

Anyway, read and ask


http://j-pouch.org/eve/forums/...531006091/m/23110816

Thanks a lot. I heard about Dr. Launer It's weird - a few months back I was looking into going to see him in CA.

All of my previous operations have been out of Mt. Sinai hospital in NYC. They were supposed to be the best, but had not worked for me. Not ruling out going back, as maybe it's just the j-pouch that's not right for me, but definitely looking into going elsewhere.

Hi...Dr Launer has an associate Dr Worsey who has been doing Kpouches independently for some time now. He was trained by Dr Launer and worked very closely on cases with him.

His information is in the forum listed in surgeons...

Filled out an appointment form on the Cleveland Clinic's website today!

The Cleveland Clinic is one of the best for a Kock Pouch. I don't know about the T-pouch, do they do that type?

Good luck, sounds like a continent pouch (I have a Kock Pouch) would be a good choice for you.

If I was going to have a Kock Pouch created, I would go to the Cleveland Clinic. My Kock Pouch was done at the Mayo Clinic but they no longer create new Kock Pouches. They only do repairs on the ones they've done in the past. They do the J-pouch there now.

I'm going to have to read up on this T-pouch, I heard about it years ago but I didn't think it went anywhere. I was surprised to see it mentioned again.

Good luck with your appointment.

I do believe they do Kock Pouches in New York.

Diet can help with the prolapse , but still have issues.

Also please check your environment- my prolapse gets worse when my immune system is being attacked by allergies/ sensitivities- smells/ mold. My body seems to fight to get ride of what's inside. Pouchitis. OLd CArpets/

Eat healthier food. Pea soup and pumkin soup help me alot along with yogurt- (homemade SCD) and fruit. So much work.

Question- does a prolapses cause cancer?

Hi Tomy,

Diet doesn't help my prolapse - it's pretty severe. Comes out about 4-5 inches EVERY TIME I go to the bathroom.

I'm actually having my 2nd attempt to correct it a week from today at the Cleveland Clinic by Dr. Remzi. Hopefully all goes well this time, as I'm risking a lot again.

I don't think prolapses cause cancer... I was never told that they do.