Lonely SBS
From: Traci (genz@co.dane.wi.us)
Tue Apr 2 09:03:34 2002
I have had the SBS since 8/00 and live in Wisconsin. I feel like I'm
the only one that has SBS in Wisconsin. I would love to have a pen pal
that I could share my frustrations, problems, etc....I do have great
support of my medical staff but sometimes I want to talk to a person
that already has SBS.
All these adhesion problems occured when I had lapscopy (spell?) in 1993
to remove my uterus. Then I developed a bowel obstruction. That was a
piece of cake surgery. Then in 1999 I developed a tumor on my ovary and
they removed both and saw alot of adhesions and hoped they wouldn't give
me trouble. A week later I had 5 resections, 9 hours long surgery and 6
weeks of hospitalization and plus 3 other short stays in 1999. I was
still in pain & vomiting the surgeon I had at that time basically told
me there isn't anything wrong w/me, etc...After one & half years living
w/that, I saw someone else for a 2nd opinion and this surgeon couldn't
believe what she saw. The adhesions was from the upper colon to the
rectum. I lost my ileum and only have 4.5 feet of small intestine left.
The surgery was a 10.5 marathon. My parents were told I may not survive
this surgery. The surgeon told my parents that if I would have would
waited another week, I would have died. AFter one week of ICU & 5 weeks
of hospitalization, I went home w/TPN, tube feeding, etc...I was on TPN
and tube feeding for 5 months.
The diet was the hardest thing I had to go through. I have always hated
dieting and it was a hard adjustment to it. It took me 6-8 months
before I got the hand of it and I had to learn to cook too. I was able
to eat cheeseburgers, fries, pizza and everything else I got sick and
had this surgery.
I used to be very active, going out w/friends, biking, jogging,
traveling. I still go out w/friends but as far as exercises, it has
been zipped! I tried jogging but I always ended up running home to the
bathroom! I'm afraid to be around places that don't have access to the
bathroom. I'm having trouble w/my iron and already had two blood
transfusions to get up iron up to level.
Anyway, it would be nice to talk to someone and share stories or swap
ideas/suggestions. Love to hear from you.
--
Traci