Hi everybody,
This is my first time ever being on a forum but I feel like I need to find others going through the same things as me. I was diagnosed with Crohn's disease when I was 16 (about 8 years ago now) with the disease being in my ileum which had me pretty narrow so with all my colonoscopies the were never able to get the scope through that point. The pediatric gastroenterologist tried plenty of different pill medications (pentasa, azathioprine etc.) but he said that I needed to be moved up to an adult gastro because he believed remicade infusions was the route I needed to take. And the remicade did work wonders (minus a couple small flares handled by prednisone) for about 5 years but then my scar tissue began narrowing even more and I was unable to eat any solid food without being in extreme pain. My doctor sent me to a colorectal surgeon asap and I had my resection 2 years ago this month. They removed 6 inches and I felt great...for 3 months. My disease came back in the exact spot so my doctor tested my antibodies levels and found I grew immune to the remicade. Next medicine attempted was 6mp but I had an awful reaction so we moved on to humira which had zero effect on me. My doctor felt he was running out of options at this point so luckily for me Boston Medical Center is close by so he sent me to see a doctor there who only deals with IBD. I began weekly methotrexate injections a couple of months ago combined with entyvio infusions. However I'm currently having extreme pains when I eat and use the bathroom now. It seems anything moving through the lower intestine (feels like anything between my hip bones) causes pain. I've lost 17 pounds in the last month because the pain just kills my appetite. I begged my doctor for prednisone again which he luckily gave me even though my bone density really suggests I shouldn't be on it. I'm currently taking pain meds in order to eat because the prednisone just doesn't seem to be working as quickly as it always has for me. My doctor is sending me back to Boston because he thinks I've pretty much exhausted all main stream medicine options and my last option is entering a clinical trial for experimental medicine. I'm praying there's someone on here who's in the same position because I'm honestly very scared. How can I have blown through all those medicine options without results? And the sound of experimental medicine makes me so nervous because who know the potential side effects of them. I'm sorry this post is so long but thank you for reading it if you do.
-Cailin
This is my first time ever being on a forum but I feel like I need to find others going through the same things as me. I was diagnosed with Crohn's disease when I was 16 (about 8 years ago now) with the disease being in my ileum which had me pretty narrow so with all my colonoscopies the were never able to get the scope through that point. The pediatric gastroenterologist tried plenty of different pill medications (pentasa, azathioprine etc.) but he said that I needed to be moved up to an adult gastro because he believed remicade infusions was the route I needed to take. And the remicade did work wonders (minus a couple small flares handled by prednisone) for about 5 years but then my scar tissue began narrowing even more and I was unable to eat any solid food without being in extreme pain. My doctor sent me to a colorectal surgeon asap and I had my resection 2 years ago this month. They removed 6 inches and I felt great...for 3 months. My disease came back in the exact spot so my doctor tested my antibodies levels and found I grew immune to the remicade. Next medicine attempted was 6mp but I had an awful reaction so we moved on to humira which had zero effect on me. My doctor felt he was running out of options at this point so luckily for me Boston Medical Center is close by so he sent me to see a doctor there who only deals with IBD. I began weekly methotrexate injections a couple of months ago combined with entyvio infusions. However I'm currently having extreme pains when I eat and use the bathroom now. It seems anything moving through the lower intestine (feels like anything between my hip bones) causes pain. I've lost 17 pounds in the last month because the pain just kills my appetite. I begged my doctor for prednisone again which he luckily gave me even though my bone density really suggests I shouldn't be on it. I'm currently taking pain meds in order to eat because the prednisone just doesn't seem to be working as quickly as it always has for me. My doctor is sending me back to Boston because he thinks I've pretty much exhausted all main stream medicine options and my last option is entering a clinical trial for experimental medicine. I'm praying there's someone on here who's in the same position because I'm honestly very scared. How can I have blown through all those medicine options without results? And the sound of experimental medicine makes me so nervous because who know the potential side effects of them. I'm sorry this post is so long but thank you for reading it if you do.
-Cailin
