Not sure If I'm supposed to post an introduction, but just in case...
Hello,
My name is Erica, I'm 30 years old, and I live in San Diego County,
CA. I've been married 31/2 years and I have a 15 month old
daughter. I had a total colectomy with ileostomy last week, on
January 24. I've had UC for 8 years and have been through the usual
in-and-out-of-the-hospital, prednisone, asacol, Immuran, killer
antibiotics routine. We were hoping I could get a bit healthier and
have this (seemingly inevitable) surgery on an elective basis, but I
just kept getting worse. After 13 days of rotting in a hospital bed,
I made the decision for surgery, the decision of my life!
I decided to not have my rectum removed at this time to prevent the
potential infertility risks from having surgery in the lower pelvic
region. The plan is for us to conceive 1 more child, then I'll
decide if I want to have two more surgeries to get a J-pouch or stick
with a permanent ileostomy (in which case, I would have to have the
rectum removed eventually to prevent cancer). I am going to join the
local UOAA group and try to get as much information as I can about
the two options from as many people as possible.
At any rate, for at least the next 5 years, and maybe forever, I will
be an ileostomate. So far, I'm dealing okay. My husband, family and
friens have all been supportive. I'm scared about what it will be
like to face the outside world (I've pretty much been recovering at
home in PJs- with the exception of 1 doctor's visit). Every time I
go to the bathroom, I see the pouch and I get a little sad. I keep
looking for specialized clothing (bathing suits, underwear, pouch
covers) on the web and nothing seems like it's made for my age-
group. I don't want people to feel sorry for me, or for people to
think I'm weird or abnormal, or worse yet- gross. I really don't
want to be "that poor lady who had to have an ostomy."
Anyway, I know I can deal with this, but sometimes it's not easy.
Hopefully I can find some support here.
Erica