Hi Sarah,

I'm glad to hear you're doing well. As I said before, much had to do
with willpower and choice. After having watched so many sick and
miserable people, I am thankful for my health everyday.

I'd be glad to tell you about my Koch's pouch but I'm not sure what
you want to know. When I became sick - and it happened hard and fast
- at 21, I had never heard of UC and the idea of ostomy surgery broke
my heart. I happened to be in the particular hospital with the only
surgeon in that area doing the Koch's pouch at the time. This was
1981. Apparently I was his first "original model"as he did mine
right at the original operation; the others he had done were
conversions from conventional ileostomies. The only other person
I've ever spoken to with a Koch's pouch was a patient he sent to meet
me - she was having a conventional one converted and wanted info. I
think the conversion was hard for her because she went into surgery
healthy and strong and then had to recover all over again. I was
just so sick that anything was an improvement and recovery seemed
like a piece of cake.

The pouch, at the beginning, is quite small. He had me emptying it
with the catheter every few hours and following a soft diet. Had to
use stool softeners for a while. I can't remember everything but it
probably took a few months to get a feel for it and a sense of my
body. I usually have to drain with the catheter about twice a day -
morning and late afternoon/early evening depending how I have been
eating during the day. Sometimes more often if I've been overeating
or having gas producing foods. Foods with tough membranes which do
not digest can block the catheter but that's only a minor
inconvenience - I just try not to eat those foods when the
inconvenience would be a bigger problem but I can't say I've
eliminated anything totally from my diet. Everything was trial and
error at first. On occasion, I have to flush the pouch with sterile
water if contents will not move through the catheter.

I used to worry that this would wear out or "break down". The
surgeon told me that some people have had to have the "nipple" valve
(or whatever it is called) repaired or replaced, but I've been doing
fine for 25 years. I think I would go to the ends of the earth to
have a repair/replacement done if needed. I have no experience with
appliances and conventional ostomies but this is what works for me
and the only way I would want it. One of the doctors I've seen since
I've moved to a different province is always on the lookout for
Crohn's - he believes some people were misdiagnosed years ago. I let
him upset me once but refuse to think about it now. I don't think
they will do the pouch on people with Crohn's as it can become diseased.

The only other problem I've had was finding some sort of dressing
that would protect the stoma and be absorbent enough for the tissue
fluid and at the moment, bladder/urinary incont. pads like Depends
or Tena are great for protecting my clothes. The surgeon once told
me that he had made my stoma protrude so that, if I had to go to a
conventional, it would work but that it could be made more flush with
my abdomen if I wished. I've never followed up on that - it has
never been an issue for me.

I've rambled on enough for now. Please feel free to ask anything -
if I can answer, I will.

Take care

Myrna

At 03:20 PM 8/9/2006, you wrote:

>Hi Myrna,
>
>Welcome and thanks for sharing your story! I'm 28 years old and have
>had an end ileostomy for 1 year. I had emergency surgery for acute UC
>but I'm happy to say that I'm doing very well these days. I agree. I
>was miserable at first, but I think you do have a choice, and I
>decided that I wasn't going to let this interfere with my life. After
>all, I'm no longer sick, and besides avoiding a few foods, I'm living
>about as normally as anyone else.
>
>I'm interested to hear more about your Koch ileostomy. I have heard
>of them, but have spoken to very few people with firsthand
>experience. I was originally contemplating J-pouch surgery, but with
>all the complications associated with that and the fact that I do
>have an active lifestyle, I decided against it. However, a Koch
>ileostomy did come up once in surgical discussions, so I'm interested
>to hear more.
>
>Once again, welcome and thanks for sharing!
>
>Sarah
>
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