My name is Dee and I have read some of the stories on
your web page and have noticed that a lot of the people were older than I
was when they found out about this disease so I thought I would let u all
know that somebody out there has had their intestines removed at an early
age(1 wk old to be precise).
Anyway I was born in 1969 in Riverside, Calf. and I was brought home
and brought back to the hospital a week after I was born I was vomiting up
feces and losing a lot of weight so when I got to the hospital they found
out that my small intestines were backwards so they turned them the
right way and gangrene set in so they took all but 17cm of my small and
some of my large.
I was in the hospital for 3 yrs straight then in and out for 3 more
because I was failing to eat and when I did eat it all went right through
me .I just recently received my medical records from 1969-1972 and I
noticed the weight I lost was unbelievable I was 6 pounds 0 ounces when I
was born and by the time my mom brought me in a week later I had lost4
ounces that may not seem like much, but after reading the charts more I
seen that I had lost even more during my visits at home. Anyway I
guess they didn't have transplants back then I was also told that in 1969
there were only 6 cases plus mine in the US. now today
I am 34 yrs old I am 4'8 and 76-80 pounds and I have never hit 100
pounds. I am in the restroom a lot I have stomach problems, and I get
accused of being anorexic which really hurts sometimes. I just recently
had a surgery done to get rid of some of the scar tissue out of my stomach
and also in my reproductive organs, the doctors seem to think I was nut's
getting pregnant because of the scar tissue and that also could have been
the reason why my back hurt. I do know that scar tissues grow back so I
might have to get it done in 5 or 6 yrs, but so far the only problems I
have that will not go away is stomach pain and the embarrassment of using
the restroom
Anyway I am writing this in hopes that someone knows or has heard of
another case like mine there are still 5 of us left I think, so if anyone
knows someone who has gotten their small intestines out in the 1960's
please let me know, I am so thankful for this website I thought I was the
only one in the world feeling like this.
Thank You again,
Dee