L
Lacey
Guest
my story
I was diagnosed with Crohn's during the summer of 1989, it was right after my 5th birthday. I spend about 6 weeks in the hospital, doctors didn't know what the hell was wrong with me. Once they diagnosed me and started me on prednisone and I don't remember what else, they got thigns under control for a lil while and sent me home.
For the next year - year 1/2, I was in and out of the hospital with lots of med changes. I finally had a broviac (type of central line) placed and was on TPN for 6 months with thought that maybe my intestines would heal if there was no food passing through. Well, I went through 2 broviacs bc one got a staff infection and one literally fell out. After the second one, my doctor suggested an ileostomy, which is what my parents and i decided to go for.
July 1991, had my ostomy surgery, and everything pretty much calmed down after that. Until I started to develop large ulcers in my mouth and esophagus. These oral ulcers became my big problem, I was always ending up in the hospital because of dehydration. My main meds at that time were prednisone and 6mp.
After years of this, in 1996-97 I was sent to a specialist to seek any other options. He suggested thalidimide (used in the 50s, caused severe birth defects, and is now an experimental drug). AFter about a year of taking the thalidimide, I was able to come completely off of the prednisone (first time in 8 years). I did pretty well for the next couple years, with only a few MAJOR flareups that required hospitalization and short doses of prednisone.
In 2000 I began to have testing to see how my intestines were looking to have my ostomy reversed. The colonoscopy ended up perforating my colon, landing me in the ICU for a week. March of 2001 I finally had my ostomy reversed, got my intestines all hooked up.
Today, I'm doing pretty good. Every time I get a stomach ache I freak out that my crohn's is flaring up, and that I'm going to go back to the days before I had my ostomy. I still get many oral ulcers, but the stubborn person I am, I just deal with them and not take any extra meds. I even stopped takign my thalidimide, so now its just 6mp and vitamins for me.
I know this has been long, and I left out alot of details, but 17 years is along time to be living with this so I tried to just include the major points. Email/IM me if anyone wants to talk: [email protected] (same sn).
-Lacey
I was diagnosed with Crohn's during the summer of 1989, it was right after my 5th birthday. I spend about 6 weeks in the hospital, doctors didn't know what the hell was wrong with me. Once they diagnosed me and started me on prednisone and I don't remember what else, they got thigns under control for a lil while and sent me home.
For the next year - year 1/2, I was in and out of the hospital with lots of med changes. I finally had a broviac (type of central line) placed and was on TPN for 6 months with thought that maybe my intestines would heal if there was no food passing through. Well, I went through 2 broviacs bc one got a staff infection and one literally fell out. After the second one, my doctor suggested an ileostomy, which is what my parents and i decided to go for.
July 1991, had my ostomy surgery, and everything pretty much calmed down after that. Until I started to develop large ulcers in my mouth and esophagus. These oral ulcers became my big problem, I was always ending up in the hospital because of dehydration. My main meds at that time were prednisone and 6mp.
After years of this, in 1996-97 I was sent to a specialist to seek any other options. He suggested thalidimide (used in the 50s, caused severe birth defects, and is now an experimental drug). AFter about a year of taking the thalidimide, I was able to come completely off of the prednisone (first time in 8 years). I did pretty well for the next couple years, with only a few MAJOR flareups that required hospitalization and short doses of prednisone.
In 2000 I began to have testing to see how my intestines were looking to have my ostomy reversed. The colonoscopy ended up perforating my colon, landing me in the ICU for a week. March of 2001 I finally had my ostomy reversed, got my intestines all hooked up.
Today, I'm doing pretty good. Every time I get a stomach ache I freak out that my crohn's is flaring up, and that I'm going to go back to the days before I had my ostomy. I still get many oral ulcers, but the stubborn person I am, I just deal with them and not take any extra meds. I even stopped takign my thalidimide, so now its just 6mp and vitamins for me.
I know this has been long, and I left out alot of details, but 17 years is along time to be living with this so I tried to just include the major points. Email/IM me if anyone wants to talk: [email protected] (same sn).
-Lacey
