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My story



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: LilLacey5@aol.com (same sn).



Thanks a lot for sharing that with us Lacey. It certainly seems like you definately have been through a lot. I hope things continue to go along smoothly for you, and it is great to hear that you are such a fighter. I hope you come around the board more often, as we would all love to get to know you better.


Hey Lacey,

Welcome to our world honey! You sound determined, positive, focussed and above all else - nice and friendly! In other words, an absolute dead cert to fit in on these boards!

Good to have you here - hope to hear lots more from you in time, and likewise, if you ever fancy a chat, I'm @ the end of a keyboard!

Take Care x :cool:


Hey Lacy

Welcome to the site. You have seemed to have had to tough and am glad things have settled for you.

All the best hun

Ps do you have MSN?



I am sure that you will find plenty of new friends here that are willing to give you help when your needing it or if you just need a shoulder to lean on ... we are all here for you. There is plenty to see and plenty to do so jump right in & have fun !! There are lots of fun games to be a part of too !! So, see you all around the board !! :eek:
Hey Lacey, I thought I was young to be diagnosed at fourteen but you beat me by a long while.

Hope you feel better



Hiya Lacey, nearly freaked out when saw your post, I have a friend called Lacey I know it's not that common a name I thought she was stalking me!!

It';s great that you got your ostomy reversed and I hope things continue to go well for you!