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:
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: