Thanks to everyone who has been sending me their experiences and comments about the website. It's really nice to know that lots of people are getting some good use from it. Here's a sample of the mail I've received. Some letters have been edited for space. If you want your e-mail address displayed by your comments, be sure to let me know. Otherwise, I won't put it up. After all, we all value our privacy! Several people have a nasty habit of not fully typing their e-mail address, especially on the forms. "RCadeDelayz" is not a complete address. I must also have the "@wherever. com" to send you a reply. So please, send all of the information for an accurate response. One more thing: I get so much mail everyday that sometimes I accidentally overlook a letter or two. If you don't get a response in a few days or so, e-mail me again and remind me, please! Thanks for you help, and your mail!
I just wanted to say that this morning I am going to have the surgery and
thought that I would pass some of the time while I was waiting by searching the
web. I was diagnosed about 2 months ago with Crohn's and was feeling sick
at school for about a month before. I first found out that I had the
Crohn's through a urologist because I have a fistula from my small intestine to
my bladder. I haven't eaten anything in about 10 weeks and have been on
the IV through a central line. The first month I was on it for 24 hours at
home and I almost went stir crazy. After that they got me on it only at
night. Since the IV I have gained back about 30 pounds and most find that
amazing. As soon as I got on the IV it was a night and day difference.
No food in my system to make me feel sick. Like I said, I am going to go
and have the surgery now so I will check back in in a few days and post those
results. They said that they are going to make the cut up my stomach and
remove some of my small intestine, the surgery is mainly to fix the fistula.
I got lucky in that the Crohn's only affected my small intestine. This is
a great site
and was amazed to read the other stories similar to mine. This disease
sure is a fun one to explain to others. Well, I am off so I will
check in later all of you. Anyone that wants, write me and we can talk
about the fun of Crohn's.
I ran into your web page for teenagers with Crohn's Disease.
I'm almost old enough to be your grandmother, and I was diagnosed with Crohn's
(actually they thought it was ulcerative colitis originally) back in 1964 when I
was 20. It was only a few weeks after I was married. I spent almost
an entire year in the hospital, on and off, and had a couple of rounds of
surgery ending in an ileostomy. Like most people, I'd had symptoms for a
few years that no one quite identified--and that I didn't want to talk about.
The medications available back then were limited, and my case
became life-threatening very fast, so the surgery was essential--although I
probably refused to admit that for a while. Having a support group would
have been wonderful. It's terrific that you are providing one. I
guess I just want to reassure you--and through you, your readers--that an
illness like Crohn's Disease and even an ileostomy eventually becomes just a
part of your life, even a relatively minor part. I've been married and
divorced, raised two sons, have four cats, worked for large companies and small
ones, traveled on business and pleasure in the US and Europe, and probably only
a handful of people even know that I'm missing significant parts of my anatomy.
Fortunately, I haven't had too many problems over the years. One good
thing about losing most of your gastrointestinal tract is that there just isn't
much left to flare up.
Of course, I too felt for a long time that it wasn't fair for
something so terrible to happen to me when I was so young. But now that
I'm a middle-aged woman, I've had friends die in automobile accidents or
struggle with diabetes and breast cancer, and I'm healthier than most people I
know! Ironic, isn't it? Anyway, I just want to tell you not to be
discouraged. A lot of good experiences are yet to come.
All the best.
My diagnosis day came in January 1999. After experiencing cramping,
bleeding, diarrhea, blotting, and all that other great stuff us Crohn's and
Colitis patients deal with for about a month my doctors finally pinpointed the
problem. They claimed I had Crohn's disease, and what a relief it was to
know they had found the problem. I figured it was not a big deal because
they claimed they could treat the disease with medication. Boy was I right
and wrong at the same! Sure things could have been worse, but this was no
bag of beans either. However in the time I have spent with this disease, I
have learned a lot and have lots of advice for others in the same predicament.
I'm now 18 and have been dealing Crohn's for over a year and a half. Feel
free to e-mail me for any advice or if you just need a fellow Crohn's patient to
talk to.
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