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

--- In ileostomy@yahoogroups.com, "myrnaainslie" <mainslie@...> wrote:
>
> Just stumbled on your group and thought I might like to post with
> you.
>
> By way of introduction, I'm 46 and have had this Koch's
> pouch/continent ileostomy for 25 years, the result of raging
> ulcerative colitis. The surgeon had at first attempted a pull-down
> during the surgery to remove my colon but the rectum and anus were
> so badly diseased that he had to go for Plan B - the next best
> choice.
>
> After my initial "poor me" phase, I realized that this was not a
bad
> thing. Life was going to go on and I could choose to make it a good
> life or a miserable one so I opted for the good life. I was free of
> pain, bleeding and medications and could lead a normal lifestyle,
> although corn and mushrooms, peas and blueberries can cause "minor
> technical difficulties" clogging up my drainage catheter so I'm
> careful with my intake of those items. I had married only a year
> before I became ill and was so glad because I felt I wasn't
> very "marketable" - just didn't see myself as attractive. After
> several years my marriage ended - other issues, not the ostomy -
and
> I was reluctant to get into intimate relationships. However, I
have
> had two wonderful partners since then who have assured me that I am
> attractive and desireable to them.
>
> Early on I had attended an ostomy support group a few times but
> didn't really find anything there for me. For one, these were
> people with conventional ostomies and I have no history or
knowledge
> of living with appliances. Secondly, I felt that a lot of the
> people there had their ostomies as the central focus of their
lives -
> the ostomies were "managing" them rather than them managing the
> ostomies. I prefer not to let this be the focus of my life - I
> decided that quite early on. In fact, I have many friends and
> acquaintances who have no idea I am an ostomate - there's never
been
> any real need to tell them. The people I do tell are always
amazed,
> somehow, that I am healthy and normal. I have never met another
> person with a Koch's pouch and would love to compare notes with
> someone some day.
>
> The only real annoyance that I have lived with over the years was
> having an embarrassing wet patch or stain on my clothing over the
> stoma because I could never come up with a dressing that would
> absorb the tissue fluid and mucus from the stoma. It took many,
> many years to discover bladder/urinary incontinence pads - I just
> cut in two and place over gauze dressing on stoma and the
absorption
> is very good. There probably is something better, somewhere, and
> I'd love suggestions but this works.
>
> Guess I've gone on quite long enough. As a writer and storyteller,
> I tend to be a bit long. Just wanted to add encouragement to new
> people. It has been interesting to look back on 25 years as an
> ostomate.
>
> Myrna
>