Hi everyone! It's been quite a while since I last posted to the forum, and a lot has happened since the last post, so let me provide a brief history of what has been going on!
I have been hospitalized for flares 3 times within 6 months over the past year, each time trying a new approach. Having been on steroids for somewhere around 2 years, we decided a different treatment method was necessary. During my most recent hospital visit, they did a CT scan of my gastrointestinal tract to check for any fistulas or other complications. The results showed that there wasn't much inflammation at all. This puzzled me because I was having pretty severe bleeding and terrible pains upon going to the bathroom. I was curious why the scan showed minimal inflammation (and no fistulas) when my symptoms were so bad. By the end of my stay, they decided adding Imuran and Humira together.
So basically, here are the different medicines I've tried:
-Prednisone (2 years, side effects too bad and drug too ineffective to continue)
-Remicade (allergic reaction to infusion)
-Mesalamine (overall ineffective)
-Mesalamine enemas (also ineffective)
-Humira (effective at first, then upped to 2 shots every two weeks in combination with Imuran. This has recently become ineffective)
- Imuran (effective at first, but appears to not be working anymore)
-Modified diet (semi-effective, but then not so much when symptoms began to reappear)
-I may be forgetting some but I feel like I've tried almost everything
Currently I am in my freshman year of college and things are not going well. Stress thus far is minimal, and I have plenty of access to the bathroom. However, the pain is almost unbearable. There are mornings where I can't even move after using the bathroom, because the pain lingers for hours. I end up taking up to 5 trips to the bathroom (during the morning, even more later in the day), and sometimes I will even see blood and mucus. The amount varies, but it is never usually a lot. I honestly am just at a loss for what to do or what to tell my doctors. I cannot handle this pain any more. I am in college, I want to enjoy my experience, not revolve around pain and pills. I have finally come to an acceptance of the disease, but I am still very concerned for myself. I can tell things still aren't quite right, and I don't know how to help this problem, seeing as the doctors didn't find any major inflammation or other complications in the CT scan. What should I do? Thank you all for your support and advice.
I have been hospitalized for flares 3 times within 6 months over the past year, each time trying a new approach. Having been on steroids for somewhere around 2 years, we decided a different treatment method was necessary. During my most recent hospital visit, they did a CT scan of my gastrointestinal tract to check for any fistulas or other complications. The results showed that there wasn't much inflammation at all. This puzzled me because I was having pretty severe bleeding and terrible pains upon going to the bathroom. I was curious why the scan showed minimal inflammation (and no fistulas) when my symptoms were so bad. By the end of my stay, they decided adding Imuran and Humira together.
So basically, here are the different medicines I've tried:
-Prednisone (2 years, side effects too bad and drug too ineffective to continue)
-Remicade (allergic reaction to infusion)
-Mesalamine (overall ineffective)
-Mesalamine enemas (also ineffective)
-Humira (effective at first, then upped to 2 shots every two weeks in combination with Imuran. This has recently become ineffective)
- Imuran (effective at first, but appears to not be working anymore)
-Modified diet (semi-effective, but then not so much when symptoms began to reappear)
-I may be forgetting some but I feel like I've tried almost everything
Currently I am in my freshman year of college and things are not going well. Stress thus far is minimal, and I have plenty of access to the bathroom. However, the pain is almost unbearable. There are mornings where I can't even move after using the bathroom, because the pain lingers for hours. I end up taking up to 5 trips to the bathroom (during the morning, even more later in the day), and sometimes I will even see blood and mucus. The amount varies, but it is never usually a lot. I honestly am just at a loss for what to do or what to tell my doctors. I cannot handle this pain any more. I am in college, I want to enjoy my experience, not revolve around pain and pills. I have finally come to an acceptance of the disease, but I am still very concerned for myself. I can tell things still aren't quite right, and I don't know how to help this problem, seeing as the doctors didn't find any major inflammation or other complications in the CT scan. What should I do? Thank you all for your support and advice.
