Hi there! I'm finally joining this forum after using it as sort of a personal crohns google for quite a while now!
overview of my story: diagnosed in 2010 at age 17 after having bowel problems for a while that docs were struggling to figure out. Lots of testing for lactose intolerance, etc. Eventually got so sick that I had rheumatoid arthritis so bad I could hardly walk in the morning, large bumps all over my body, mouth sores, and just general misery. So finally they admitted me to the hospital for testing and I was finally diagnosed with Crohns that was affecting pretty much everything from mouth to anus. Started Prednisone, imuran, asacol, Prilosec, and then eventually remicade around this time. Remicade worked amazing for me for about 4 years and then I developed antibodies and things haven't been stable since. I had stopped taking all the pills after a couple years. After Remicade I tried Humira. It never really put me in remission but probably helped a little bit. I was still having a lot of problems especially in the rectum and sigmoid colon though, even after doubling the dose of Humira, so my doc recently decided to switch me to Entyvio, a new drug that he seems really optimistic. The only big negative is that it can take a really long time to be effective. I started in the end of May. This waiting period has been killer. I am sicker than I have ever been since diagnosis, the joint pain is back, constant rectal bleeding, major fatigue and anemia problems, just horrible. To help bridge the gap I'm back on Imuran and am now trying Budesonide as well (started 1 week ago).
It seems like nothing is really working. It's majorly affecting my quality of life at this point and is one of the major reasons I'm probably going to have to move back in with my parents.
I would love any advice people may have for rectal pain, which I suffer from a lot at the moment. I've tried Preparation H suppositories, but they don't seem to do much. I would definitely be interested in trying other pain relieving suppositories if there are any, as the pain feels like it is just right there on the inside.
I'd also appreciate advice from people who deal with joint pain from crohns. I just take a lot of Tylenol for it now but I feel like that's not a great thing to do in general.
overview of my story: diagnosed in 2010 at age 17 after having bowel problems for a while that docs were struggling to figure out. Lots of testing for lactose intolerance, etc. Eventually got so sick that I had rheumatoid arthritis so bad I could hardly walk in the morning, large bumps all over my body, mouth sores, and just general misery. So finally they admitted me to the hospital for testing and I was finally diagnosed with Crohns that was affecting pretty much everything from mouth to anus. Started Prednisone, imuran, asacol, Prilosec, and then eventually remicade around this time. Remicade worked amazing for me for about 4 years and then I developed antibodies and things haven't been stable since. I had stopped taking all the pills after a couple years. After Remicade I tried Humira. It never really put me in remission but probably helped a little bit. I was still having a lot of problems especially in the rectum and sigmoid colon though, even after doubling the dose of Humira, so my doc recently decided to switch me to Entyvio, a new drug that he seems really optimistic. The only big negative is that it can take a really long time to be effective. I started in the end of May. This waiting period has been killer. I am sicker than I have ever been since diagnosis, the joint pain is back, constant rectal bleeding, major fatigue and anemia problems, just horrible. To help bridge the gap I'm back on Imuran and am now trying Budesonide as well (started 1 week ago).
It seems like nothing is really working. It's majorly affecting my quality of life at this point and is one of the major reasons I'm probably going to have to move back in with my parents.
I would love any advice people may have for rectal pain, which I suffer from a lot at the moment. I've tried Preparation H suppositories, but they don't seem to do much. I would definitely be interested in trying other pain relieving suppositories if there are any, as the pain feels like it is just right there on the inside.
I'd also appreciate advice from people who deal with joint pain from crohns. I just take a lot of Tylenol for it now but I feel like that's not a great thing to do in general.