Koch Pouch Question from General Board

[Lynne]

I have copied this post from the General Discussion Forum from Connie.

Lynne
CDN Chair


connie1961

Joined: 29 Mar 2007
Posts: 1

Posted: 2007-04-03 04:06:33 Post subject: Koch Pouch

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My son has a Koch Pouch. I am curious out there if anyone who has a Koch Pouch has stomach pain on a regular basis? He tells me his stomach pain in nonstop and he is really growing tired of the pain. They have done CT scans, they have done xrays and nothing shows up. There is nothing wrong with the actual pouch itself. My son tells me that it feel like a big bulge on one side of his stomach, it moves to the other side of his stomach and then feels like it pops. The Dr. who took over my son and his care after the original surgeon retired, tells my son that he does not chew his food well and that is the problem. but my son can go for two days on an all liquid diet and the pain is still there. He cannot exercise, he cannot eat healthy food and diet because all of the healthy food he cannot eat due to it not digesting. Fruits, vegetables, etc. He cannot eat salad. He does not go anywhere or do anything fun because of the Koch Pouch. He refuses to go to concerts because of having to drain the pouch and the odor. If he is out and about, he won't go far. He comes home to drain his pouch and then heads back out. It is like he is embarrassed and the Koch Pouch has taken over his life not allowing him to have any fun or do anything at all. Does anyone else out there who has a Koch Pouch ever experience this kind of pain or any pain at all in the stomach and if so, what is the cause? It really makes me wonder why the stomach would be in so much pain due to just having a Koch Pouch. Also, what kinds of gauze and patches does everyone use for the mucus drainage? thank you for allowing me to ramble. Just a very concerned mother who worries about her son. [/b]

[lesson]

Hi Connie
Sorry to hear your son is having such a problem. I have some questions if that's alright. How long has your son had the Kock and how long has he had the pain? Has he been tested for any food allergies that could cause such discomfort..like a wheat allergy? Were the x-rays an upper GI series? I suppose the pouch has been scoped.
I guess I'm wondering if the cause of his problems could be unrelated to the pouch.

For people with Jpouches and Kocks, when they run into a wall trying to find the source of a problem some turn to the Cleveland Clinic. Dr. Fazio is the best at Kocks. In addition he works side by side with the best GI doctors around so it's a great team.

As for him (how old is he?) not going anywhere...hmmmm. I had my Kock when I was 24 years old (I'm 52 now). It never stopped me from doing anything. I travel in the states often hiking, rafting and sight seeing. I went to Russia and just returned from Italy. I have emptied the pouch in airplane/airport restrooms, concert venues, store restrooms and wherever else I need to. The Kock isn't supposed to tie you down. I don't care what other people think when I'm in the bathroom...and most people have smelly poop
this is not unique to ostomates.

I use nursing pads. Some people use a sanitary napkin cut to size, others use AmPatch.

I rambled too But I hope I've helped a little.

[lesson]

I just wanted to add that I'm a mom of a teenager and two sons in their early twenties. I truly understand the concern you have for your son.
Could the pain be due to adhesions? random thought there