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04-23-2006, 06:32 PM   #1
hitrixie
 
My Story

Hi,
My name is Trish a.k.a. Trixie. I am 36 (37 next month) and was diagnosed at 12 although I'm sure I had it way before that. I was told I was anorexic, but my mom who also has Crohn's ( she was diagnosed at 30, just after I was born, my 2 older sisters are fine) asked about me having it and after a scope sure enough that's what it was. My first surgery was at 12 (also took out my appendix, 2fer deal!!) I have had 2-5 year remissions through out but since 1996 things took a turn for the worse. I spent 3 months at a time in the hospital in 1996, 1997, 1998. In 1997, 1998 I had 3 surgeries each time. In total I've had 13 surgeries, the last one was my gallbladder which somehow attached itself to my stomach ( another month in the hospital ) that was in Nov/03. I had an temp. ileostomy for a year in '97, but had nothing but problems with it. I got down to 85lbs ( I'm 5'7" and usually about 125lbs) and had to have the stoma redone 2 times. I really could write a book about mistakes done at the hospital. The city I live in only has 1 G.I. and he's not so good (or maybe just too busy). I finally found a G.I. specalist / researcher in a city 5 hrs north of here and he is wonderful, my last 2 surgeries were done up there with no problems. I have been on every medication out there, I am currently on Imuran (since 97) and have had about 5 infusions of Remicade in the past (which worked wonders). Unfortunatly in the last month things have been flaring again. My mom was diagnosed with Pulmonary Fybrosis, (Scar tissue builds up in your lungs, slowly sufficating you) about 8 years ago but this year has really gone down hill. She has been moved to the top of the lung transplant list a year ago and has been in and out of the hospital and i'm really worried about her. She's never smoked and this just seemed to come out of nowhere. (why do bad things happen to good people ?),so I've been a little stressed. On Monday I'm booking my next Remicade infusion. Hopefully that works. Spent Fri (Apr 21) in the ER on fluids and morphine most of the day they tried to admit me, but I was having none of that!!! I have colonoscopies done every 6 months - a year, for the strictures from the reversal of the ileostomy site. ( They do a balloon dilation to stretch the area). I also get B-12 injections every 2 weeks. I suffer from depression and am also on Prozac and Welllbutrin SR and MS IR (morphine) for pain. Also from being on Prednisone since I was 12 off and on, I now have osteoporosis, I had asked for a bone scan years ago and the GI said I was way to young. Then went to the other GI up north and he could not believe they had not done one on me, and sure enough I now have the bones of an 80 year old. ( no more skiing for me!!!) so I now take Didrocal and Cod Liver Oil capsules.

I have lost 3 jobs because of the damn disease and my marriage ended about 12 years ago ( not a very supportive husband ). I'm now living with a very supportive boyfriend for 4 years, I have no childern, just my dog Jake.

I have noticed a few teens on this site and I know what it's like trying to get through school. Even though I missed ALOT of junior and senior high, I was always in the hospital on TPN (It took me till I was 18 to finally hit 100lbs!!) somehow I managed to graduate !! I missed 2 of my final exams in grade 12, but they averaged my grades for the year and passed me. Thank God !!!

I'm sorry to go on and on, my only real advice for fellow crohnnies is to listen to your body no matter what. I don't know how many times I've tried to tell doctor's something (like I have an obstruction) and they just shrug it off. Don't ever let them tell you it's all in your head, IT'S NOT. I had one Dr. tell me I was being too sensitive and to go home and eat a bran muffin. A bran muffin!!!!! that's the last thing I needed. Anyways I went to emergency the next day and sure enough it was an obstruction.

Anyways thats my story or parts of it anyway. I'm glad that this site exsists, it's always nice to know that there are people out there that understand what we're going through. I wish they had a site like this 24 years ago!!!!

Thanks for listening. Wishing everyone good health and much happiness !!!
P.S. Thanks for the invite to this site.
Trish
04-23-2006, 06:39 PM   #2
mikeyarmo
Co-Founder
 
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Join Date: Feb 2006
Location: Toronto, Ontario
Thanks for sharing so much with us Trish. You definately have been through a lot and you are obviously very strong to have been through it all. You also gave some really good tips that I am sure we can all use.

I am so sorry to hear that things are a bit tough for you right now. I know you are worried about your mother, but the stress cannot be good for you either. We all just need to hope that things will work out and not worry about them too much.

I am glad that you are now seeing a better GI. I know it can get frustrating when others do not understand what you are going through but to think a doctor recommended a bran muffin? Good thing you decided to listen to your head over your doc though.
04-23-2006, 06:44 PM   #3
ReeRee
 
Hi Trish! Mike has already said everything I wanted to say, he's good at that Just want to say Welcome to the group and I can't wait to get to know you better. See ya around the forum!

04-23-2006, 06:51 PM   #4
jyarmo
 
Hey Trish, thanks for sharing! I like what you said about listening to your body...I'm a big believer in that too!
04-23-2006, 07:08 PM   #5
Judyc
 
Join Date: Apr 2006
Location: Rochester, New York
Welcome Trish, we all could write books on what we've been through. I, too, got it that young and was 75 pounds in high school, thus the anorexic misdxes. I too believe in listening to your body. One doctor told me "there is nothing I can do, nothing is showing up on the xrays"...I said "I want another opinion", he got me his colleague, a different place for the barium swallow. Got there at 7:30AM, I was there till 4:30PM when they closed, meaning 2 partial blockages so the barium never made it to the colon in all those hours! He called me when I got home and said "you need surgery NOW"...I wanted to say...."I thought you said there was nothing wrong with me??" Needless to say, I fired him after that....doctors!! .....at least now I have a great GI Specialist which makes all the difference in the world, plus she's a female GI doctor, over a bunch of men GI doctors!! I like that!....good luck Trish...you sure have been through a lot...Judyc
04-23-2006, 08:02 PM   #6
Jeff D.
Senior Member
 
Join Date: Apr 2006
Hi welcome to the forum. Feel better. Sorry I have a horrible headache right now so cannot talk to much.

Jeff
04-23-2006, 11:58 PM   #7
cookey
Mama Crohnie
 
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Join Date: Apr 2006
Hi Trish, truly inspiring story. I agree with what you said also, listen to what your body tells you, who knows better then us..what is really happening. If I hear one more doctor tell us it's all in our heads, I swear I'll scream. I think each and everyone of us has been told that, at some time or another. You're definitly on the right path Trish, I admire you actually...and I have been a Crohnie for near 30 yrs. Stay strong gal, always.
04-24-2006, 07:11 AM   #8
Karen
FRIEND 4 1 & ALL
 
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Join Date: Apr 2006
Location: Ohio

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Aboard Trish ... Everything you have gone through sounds like what my husband just went through so take care of yourself & see U around !!
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