Desiree:

Jon's advice is spot on. I underwent my colestomy 31 July 2006. I am
here to tell you that it significantly affects your life. I struggle
to cope with this every day and there are times when I want to give
up. My wife has been awesome and if it weren't for her, I'm afraid of
what the affects might have been. Mine is supposedly reversible, but
I'm concerned that there might be complications that will prevent
them from reversing it; that leads to increased anxiety and
depression. It can be debilitating for me.

Your fiance will need your support. You have to be strong for him. He
will have a difficult time with intimacy, as Jon mentioned. I can't
even consider it despite my wife's overtures.

Intimacy is the least of my concern, I barely have an appetite and
have lost about 25 pounds since the operation. My energy levels are
way down, so I always feel fatigued. I just nibble on foods that I
know won't bother me and it's a very, very short list. I'm afraid to
eat too much because I know what the results will be.

Managing the bag (as I like to call it) can pose significant
challenges, like getting the hole around the stoma cut to the right
size so that there is no pancaking, and ensuring that the wafer
adheres completely to the skin around the stoma to avoid leakage,
which has happened to me twice now. The odor is unbearable and when
you are around colleagues when it happens, well, let's just say that
it is a very unpleasant ordeal.

There is no positive way to spin this other than being alive is
better than being dead, I suppose. I'm not so sure that's the case
right now.... I don't know your fiance, but I hope he has a strong
will and a strong desire to overcome this. I let it beat me initially
so it's been an uphill battle for me. All that I can tell you is that
your support is going to be crucial to his recovery. You have a lot
of folks out here who are on your side, so take advantage of us.

Finally, be sure that he gets the right colestomy bags/kits. I use a
two piece with flex adhesive. My stoma is rather small now (it
changes size and shape), so it works pretty good. The location is at
my belt line, so as Jon said, it changes the clothes you wear. I wear
jeans with a shirt outside to cover the bag. If I had to wear formal
business attire (which I did pre-colostomy), it would cause
significant problems because the belt line would essentially cover
the stoma. I work for good people who understand, but we're not all
that lucky.

Good luck to you and your fiance. For what it's worth, this
experience has brought me closer to my wife emotionally, but more
importantly, it has renewed my faith in God. I hope this very
personal story will give you some insights to what your fiance may
experience. We are all different and we all react differently to
personal crisis.

Cheers,
Kevin

--- In colostomy@yahoogroups.com, "Desiree" <desid21775@...> wrote:
>
> Hi everyone!
> I am really looking for some assistance. To be honest, I am not the
> one that will have the colostomy done. My fiance will have the
> colostomy surgery at the end of October. He has a disease called
> Hidradenitis Suppurativa, which attacked the muscles/tissues
> surrounding his colon. This caused them to become severly diseased.
> He has the top Colo-Rectal Surgeon in the SF Bay Area.
>
> I have a lot of questions and am unsure of where to start. So I'll
> start with the basics. Was the colostomy used as a last resort? Why
> did you have the colostomy done? How has your life changed, and has
> it changed for the better or worse. What can I, as a significant
> other expect?
>
> I do understand that this is a group for people with Colostomy's so
> if I don't belong here, I completely understand.
>
> Thank you!!!
> Desiree
>
> California State Contact/Owner
> http://groups.yahoo.com/group/california_hs
> california_hs@yahoogroups.com
>
> HS_Spouses Group Owner
> http://groups.yahoo.com/group/hs_spouses
> hs_spouses@yahoogroups.com
>
> To learn more about Hidradenitis Suppurativa please visit:
> www.hs-usa.org
>