Hello. I am a lurker here, but finally decided to register and say hi. I was diagnosed with Crohn's when I was 16 and I am 31 now. When I first got diagnosed it took them a long time to figure out what was wrong with me. I ended up so sick I had a fistula, was malnourished, my feet swelled up and I had open sores all over my shins and knees. I had to be carried to the hospital because I could no longer walk. I recovered rather quickly with Prednisone and Asacol. I later went on a 6-MP and Asacpol and one short cycle of Remicade. I stayed on Asacol and 6-MP for about seven years without a flare up.
Being a bit of a rock and roll kid I lived by the live fast die young principle in my early to mid 20's with a lot of booze and partying, eating and drinking anything I wanted.
At about 29 I started to feel sick again and started with Remicade on an 8 week cycle, and the Asacol and 6-MP. At 30 my insurance changed and I started to see a new doctor (supposedly one of the best gastros in San Diego). Since seeing him I have only been on Remicade, now every 4 weeks and a double dose. Unfortunately, I am not really responding anymore and my CRP blood tests are not improving. I have had two colonoscopies this year. I have a family history of colon cancer so I really stay on top of getting checked. Really if it was not for pain I would be OK. I can deal with the rumbling intestines and diarrhea. 15 years of that it is old hat now. They recently gave my some Hydrocodone to the pain, but really it does not do much, so I will probably be seeing a pain management specialist. I am staying at the 4 week dose of Remicade until February when I will have another colonoscopy to see if there has been any improvement.
My doctor is also referring me to the IBD Clinic at UCLA to have a second opinion and see what my surgical options are. There has been talk of removing my colon but I am not to keen on having an irreversible procedure done at 31 years of age.
I am also running the Las Vegas Marathon in December for the Crohns and Colitis foundation (not asking for donations, already reach my goal).
One thing I have learned through all of this is that you just can't get to bogged down with all of the tests, hospitals, Dr.'s, lousy insurance companies, etc. I always say there is people out there that have life worse off than me, and I should be thankful for what I do have, not harp on anything else. Getting down about Crohn's is no help to yourself.
Cheers!
Chris
Being a bit of a rock and roll kid I lived by the live fast die young principle in my early to mid 20's with a lot of booze and partying, eating and drinking anything I wanted.
At about 29 I started to feel sick again and started with Remicade on an 8 week cycle, and the Asacol and 6-MP. At 30 my insurance changed and I started to see a new doctor (supposedly one of the best gastros in San Diego). Since seeing him I have only been on Remicade, now every 4 weeks and a double dose. Unfortunately, I am not really responding anymore and my CRP blood tests are not improving. I have had two colonoscopies this year. I have a family history of colon cancer so I really stay on top of getting checked. Really if it was not for pain I would be OK. I can deal with the rumbling intestines and diarrhea. 15 years of that it is old hat now. They recently gave my some Hydrocodone to the pain, but really it does not do much, so I will probably be seeing a pain management specialist. I am staying at the 4 week dose of Remicade until February when I will have another colonoscopy to see if there has been any improvement.
My doctor is also referring me to the IBD Clinic at UCLA to have a second opinion and see what my surgical options are. There has been talk of removing my colon but I am not to keen on having an irreversible procedure done at 31 years of age.
I am also running the Las Vegas Marathon in December for the Crohns and Colitis foundation (not asking for donations, already reach my goal).
One thing I have learned through all of this is that you just can't get to bogged down with all of the tests, hospitals, Dr.'s, lousy insurance companies, etc. I always say there is people out there that have life worse off than me, and I should be thankful for what I do have, not harp on anything else. Getting down about Crohn's is no help to yourself.
Cheers!
Chris