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Hello there!

Hey everyone, I've been poking around the forums reading a lot and posting a little for the last week or so. I thought it was time maybe I officially introduce myself. :redface:

I was diagnosed in 1998 (age 18) after 9 months of symptoms. I was actually diagnosed pretty quickly after I finally admitted to myself that there WERE symptoms and I should be talking to my doctor about it. I had always been a chunky monkey growing up and one of my biggest symptoms was weight loss and lack of appetite. I lost around 90 lbs and had never received so many compliments in my life before. Even when I was in pain and knew deep down something was very wrong, it was incredibly disappointing to realize it wasn't me just growing out of baby fat.

Anyways, my GP did a couple tests, if I remember right it was a barium enema and maybe some blood work. She sent me to a GI who wanted a colonoscopy done to confirm it. He prescribed me prednisone and asacol. I don't remember what dosage anymore.

My disease was relatively stable for awhile. I had a very hard time emotionally and mentally recognizing and accepting that I had Crohn's disease. I did not make any follow up appointments with this GI. I took the asacol until I was 23 or 24 (2003ish) when I decided there was no point taking them because I could see them still whole when I took a BM. It was probably one of the dumbest decisions of my life.

I was off medications for about 4 years. I remember just wanting to be normal. Not be the ' sick one' of the family. Obviously that did not play out very well for my health.

By 2007 my health was going downhill fast. I had severe pain, cramping, gurgling, Diarrhea every day, loss of appetite (peanut butter was the only thing I was eating) weight loss (100lbs), no energy or motivation, nausea and vomiting. I was severely depressed cos I knew it was the Crohn's but I didn't want to deal with it again. I ignored it until I woke up one morning with a lemon sized lump sticking out from just below my ribcage.

I went to the ER and they thought maybe it was just a hernia as a result of past abdominal surgeries (not related to crohns). They did an ultrasounds and 'confirmed' a hernia but because I had so much old scar tissue from other surgeries they wanted me to have a CT scanso they had a better idea before going into surgery. The CT scan showed that it was actually a huge abscess of infection in my small intestine due to the Crohn's. I had emergency surgery to remove the abscess. I spent 2 months in the hospital trying to recover and they scheduled me for a second surgery 3 months after the first to resect the rest of the small intestine that was beyond repair.

I went back for that second surgery. While I was recovering that evening,the resected areas leaked and I became septic. I was taken right back to the OR for emergency surgery. This one went nominally better from the doctors viewpoint. I woke up to an ostomy bag on my side. And I freaked out. I had to stay in the hospital for about a month afterwards since my body wasn't adjusting to the bag. My disease is very 'high' in my small intestine so the ostomy had to be even higher.

They sent me home even though I was still having constant diarrhea. My new GI had prescribed imuran to me. He had mentioned remicade but said it was very expensive, that was all he said about it. I was home a week with the bag and the imuran when I went from feeling just sorta shitty into completely terrible. Turned out it was a combination of being allergic to the imuran which was incredibly painful in my joints ...plus being severely dehydrated from the nonstop diarrhea. I black outed and luckily for me my mom and brother were there to take me to the ER.

I was readdmitted to the hospital. The GI took me off the imuran and put me on salofalk. I was in the hospital for another month to monitor and try to manage the diarrhea. It never stopped and by the end of the Month, the doctors decided to reverse the ostomy. That surgery went well and I spent another month in the hospital recovering from that.

About 6months later I went to book a follow up appointment with that GI and was told I'd waited to long and was no longer one of his patients and I'd need a new referral. Since we didn't really get along so well during my hospital stay, I figured if I needed to get a new referral I might as well get a new GI. I moved on to my current GI and after an initial colonoscopy, she decided we should put me on remicade.

I think I just had my 14th or 15 th remicade infusion last month. It's been going well. I've been having some joint pain, so she recently changed my dosage from every 8 weeks to every 4 weeks. Fingers crossed that's the answer.

:redface:
 
No need to worry...I really didn't think it was that long! I was diagnosed in 1996 aged 17 and I think if I wrote down everything then it would be super long.

Sorry things have been so tough for you. I think a lot of us will make some questionable treatment decisions at some point so know that you are not alone in that.

I think it helps a lot to have so much information on the internet now and active forums where we can read about other people's experiences. I think it would have helped a lot with dealing with Crohn's when I was first diagnosed.

Anyway I have disease in the small bowel too - stricturing jejunoileitis. I'm glad you have a GI who is doing more for you and I hope you continue to respond really well to Remicade :thumright:
 
Hi there

You have been through a rough time, how are you feeling now (mentally and physically)? You have been robbed of your early adult years, how do you feel about the future? That is a personal question, you don't have to answer: I am always interested to know how people deal with a chronic disease once (if they are not fighting for survival).
 
Wow. thanks for sharing. I am glad to see Remicade is working well for you. I hope it keeps working for a long time. I wonder similarly to Kickstart g of Orange. I constantly worry about that for my kid who has been robbed of her pre-teen & teen years so far. Anything you'd go back and say to yourself back then if you could?
 
No need to worry...I really didn't think it was that long! I was diagnosed in 1996 aged 17 and I think if I wrote down everything then it would be super long.

Sorry things have been so tough for you. I think a lot of us will make some questionable treatment decisions at some point so know that you are not alone in that.

I think it helps a lot to have so much information on the internet now and active forums where we can read about other people's experiences. I think it would have helped a lot with dealing with Crohn's when I was first diagnosed.

Anyway I have disease in the small bowel too - stricturing jejunoileitis. I'm glad you have a GI who is doing more for you and I hope you continue to respond really well to Remicade :thumright:
You're right, it would have been so helpful to have had information available back then like it is now. I would have been all for a support forum when I was first diagnosed..It would have been the baby steps to accepting things that I needed.
 
Hi there

You have been through a rough time, how are you feeling now (mentally and physically)? You have been robbed of your early adult years, how do you feel about the future? That is a personal question, you don't have to answer: I am always interested to know how people deal with a chronic disease once (if they are not fighting for survival).
Physically I'm doing pretty decently. I'm having more joint pain in the last year or so that's been pretty excruciating and debilitating at times. I did make one appointment with a rheumatologist who wanted me to go on methotrexate. But I've heard a few horror stories about that and brought those concerns to my GI. ..that's why we decided to double the remicade prescription for now and see how things go from there.

I'm still learning to accept it. I still don't like talking to people directly about it. This kind of environment is much easier for me to discuss it. I really do feel like I've missed out on a lot...just from being tired in general, let alone the time I ve been in the hospital for.

I dunno, I do think it can skew your outlook on life when your diagnosed young. It's hard to overcome that...its a work in progress
 
Wow. thanks for sharing. I am glad to see Remicade is working well for you. I hope it keeps working for a long time. I wonder similarly to Kickstart g of Orange. I constantly worry about that for my kid who has been robbed of her pre-teen & teen years so far. Anything you'd go back and say to yourself back then if you could?
I really don't know what I could have heard back then that I would have listened to. I really internalized everything.
 
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