Crohn's Disease Forum » Your Story » CD since 15 yrs old heres my story


06-24-2010, 09:31 AM   #1
Jao
 
Join Date: Jun 2010
CD since 15 yrs old heres my story

I was diagnosed with CD when i was 15 yrs old. It was right after my best friend past away, some think that is the reason why i have CD. It took about 5 month to diagnose it and then the Dr i was seeing at the time tryed for about 3 more months to calm it down. I went from 185lbs to 135 during that time. She was unsucessfull and i had my first hospitalization. I was in the hospital for a total of 5 weeks during that time they tryed heavy doses of prednisone to calm it down finally they tried this new drug at the time call remicade. I had one infusion and my symtoms seemed to leel out and after 5 weeks i was released. I left the hospital at 121lbs. After that i was put on 6mp and for about 2 yrs i good.
Then all the fun started. When i was 18 i started to get extremly sick again. I was in extreme pain and constintly throwing up and having diahrea. The doctor iw as seeing at the time just tried calming it down with more prednisone and it was not working. I then decided to seek a new doctor. I found this man out of warren OH that just lives for CD. After about 3 more months of him trying to get it into remission with the uses of prednisone, pantasa and immurane he addmitted me to the hospital again. I was hoapitalized for about another 5 weeks and finaly the inflamtion went down enough to where i could be released by this time i had lost another 50 plus lbs.
My new doctor at the time decided to give immurane a try again. He said maybe since i was int he middle of a flare up that, that it why it was unable to work. Well not even 8 month later i had another flare up. i am 19yrs old now, so my doctor tried increasing my immurane along with giving my the prednisone still did not work. So after i lost another 30 or so lbs and i could not take the pain anymore i was hospitalized again. This time i was in there about a month. And when the innflamtion calmed down enough i was released. My doctors plan when i was released was to keep me on prednisone for a while till i was completely healthy.

Now i am 20 about another 6 to 8 months after my last hospitalization i had another flare up. Same symtoms; terible pain, internal bleeding throwing up all that good stuff. So my doctor tryed remicade. Now since i was given one infusion when i was 15 i was at the risk on being allergic to it because your body will build up antibodies once you stop the medicine. Well just my luck i was and my throat started sweeling up and my face got real warm, it was very scary. Had to stop the infusion and he tol dme that i can still take it they just have to prep me with some meds before the next infusion. So i had to wait 2 weeks, mean while i am suffering from the pain and weight loss. I go to get my next infusion and the same thing happen now this time my body went into convulsions, and i was rushed to the ER by ambulance. I ended up staying int he hospital and i had my first bowel resection. They removed about 14in on the small intestines. I was released after the surgery and not even a month later i get a fistula conected to an abssess on my anus. I had to go back in and have that surgically removed. And this ment my CD was back and active, so i started on Humaria.

I was on the humaria for almost a year with no problems everything seemed fine. Until one day i started seeing this rash coming up on my body. Went to the dermotologist and she said it was psoriasis. Mean while i never had it before. So i tryed the creams and they did not work and it kept getting worse. Finally they did i biopsy of it and the results said i was having a reatioce tot he humaria. So i stopped the humaria but i guess it takes a long time to get out of your system. Well my entire body ended up being cover in the gross rash. I was covered from heard to toe. I had to be seend my specialist at clevend clinic to treat the rash. It took them a year to get it to calm down and almost a year and a half to fully get the rash to go away.

Now about 3 months after the rash i started having some issues with my stomatch again. Turned out my i had a stricture (which means part on my intenstines shrivled up and died).I had to have surgery to remove the that part. I had several complications with the healing process. I had to had parts of the insision reopend and they had the heal from the inside out. I had to pack it with all this stuff for months till it finally healed. Then when it did heal i started seeing the raises spotf on the insision. It turned out to be the stitches coming up through the insision. I had to then go back under the knife and the insision reopened and have it heal from the inside out again. And that leads us to present day. My doctor said there are two meds out there that i have not tryed one is cimzia which is in the same family as humaria and remicade (which i had a reaction to both) and there is some infusion i can not remember the name of it. I go see him tomorrow to discuss what our next step is.
And thats my story i am sure i missed some stuff but covered the majors so let me know what you think.

Last edited by Jao; 06-24-2010 at 01:14 PM.
06-24-2010, 02:17 PM   #2
Crohn's 35
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Join Date: Oct 2009
HI Jao, welcome to the forum!!! My you have had a journey no would want to try and figure out. My doctor has no hair left because he has been scratching his head. Like you I ended up in ER over a reaction to Remicade and a year later tried the Humira, I didnt have a reaction but it just was not working. Went back on high doses of Pred, been hospitalized two or 3 times in the last year, nothing worked and we dont have Cimzia here but my Gi says it probably wont work.

I was on Methotexate, an old drug being used again but I was getting sick from it and still having flares. So now....all that is left is surgery..number 3. Our surgery list is long so in the meantime I need to switch Gi's because the one I have is retiring. Gonna just keep rotating the drugs I have that are mild and try natural stuff.

Try not to let the disease get you down too much, it is hard and you have to

Lots of people here to help you and welcome you. Glad you have joined us, hope you get relief soon, keep us updated!
06-24-2010, 02:29 PM   #3
Astra
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Join Date: Jan 2010
Location: St Helens, Merseyside, United Kingdom

My Support Groups:
Hi Jao
and welcome

Wow, that's some story, what do we think? I think you deserve a medal!!
hope you stick around, lots of support here for you, glad you found us
lotsa luv
Joan xxx
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Joan

Dx Crohn's in TI 2005 symptoms for 15 years prior

BEEN ON -Azathioprine, 6MP, Prednisolone, Pentasa, Budesonide, Metronidazole, Humira, Methotrexate,

NOW ON -Amitriptyline 25mg
21/02/14 Right hemicolectomy surgery




http://www.facebook.com/#!/profile.p...4208290&ref=ts

No-one should make you feel inferior without your consent!

06-24-2010, 05:19 PM   #4
DustyKat
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Join Date: May 2010
Location: New South Wales, Australia
Hi Jao and

I agree with Joan, you really do deserve a medal! So glad you could join us and I hope you find something to give you relief real soon.

Take care,
Dusty
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Mum of 2 kids with Crohn's.
06-24-2010, 06:19 PM   #5
belle1999
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Join Date: Feb 2010
Welcome Jao!
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Diagnosed December 30, 2009
Current Meds: Humira, iron, vitamin d, vitamin c, b12, multivitamin
Also have anemia and anxiety disorder

http://www.facebook.com/sarahbelle99
06-28-2010, 09:20 AM   #6
Regular Joe
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Join Date: Sep 2009
Location: Cleveland, Ohio
Welcome Jao,

Sorry you've had such a rough time. Your symptoms sound severe, and it must be difficult and painful for you. I hope you're finding good specialists at the Cleveland Clinic. I have an excellent GI at the main campus. If you'd like, we can PM with specialist names, and I can let you know who's been most helpful to me and my girlfriend at the clinic.

Having Crohn's is not easy, and if there's anything I can do to help you, just let me know. We are all here for you, and there are many others that will also be glad to help.

Joseph
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"When I change the way I look at things, the things I look at change."

Crohn's Disease: November 2002
2G Sulfasalazine
60mg Bentyl (dicyclomine)
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