- Joined
- Apr 10, 2011
- Messages
- 265
Greetings everyone. This is my first post after lurking on this site for many many months. This forum has been a great source of comfort, information and insight since I discovered it after my diagnosis in late 2009. I'm glad it's around and filled with such wonderful people.
My reason for coming out of hiding today is to ask your opinion on my prescription situation. [Disclaimer: I'm fully aware that none of us are trained gastroenterologists (or maybe some are, who knows), but I feel like many of us have done so much research that we can offer each other useful insight and advice.]
A bit of history first:
I was diagnosed with Crohn's in late 2009 (symptoms started in 2007) and have been struggling with active disease daily. My symptoms are mainly severe abdominal pain – mostly in the left-side - bloating and nausea. Tests have shown that a foot long piece of my small intestine in the jejunum section is narrowed (no stricture or fistulas) and I have ulceration in several areas of the colon. I have active inflammation and active symptoms.
The first drug I tried was Pentasa, which I was on for several months and which didn't work. Then I tried another mesalamine drug, Apriso, which worked only to the extent that it stabilized my bowel movements (I only had diarrhea occasionally, but when I take Apriso I only get it rarely, which is the only reason I continue it). In Fall of 2010, we added the steroid Entocort, which seemed to work a little bit in lessening the inflammation (worked after a month or so), but then stopped working. I've lost about 20% of my body weight in the past year and a half. I am emaciated and continue to shed weight. The inflammation and pain continues. These past few weeks have been the worst of my life - very frequent severe abdominal pain and a lot of nausea. I am grateful that diarrhea and vomiting have not been symptoms of my disease (really I am amazed at how differently Crohn's presents itself from one person to the next), but the pain is so strong that sometimes I think I would rather die than suffer another second.
Here is where I would like your opinion: my GI recommends that I start Remicade - since the other meds have not been effective in controlling the inflammation. Naturally, I am very anxious about taking such a strong drug. But I am also desperate to get the pain under control. I feel like most GI's would recommend Remicade as well, but that's just me speculating. I am considering getting an opinion from another GI. What would you do in my situation?
My reason for coming out of hiding today is to ask your opinion on my prescription situation. [Disclaimer: I'm fully aware that none of us are trained gastroenterologists (or maybe some are, who knows), but I feel like many of us have done so much research that we can offer each other useful insight and advice.]
A bit of history first:
I was diagnosed with Crohn's in late 2009 (symptoms started in 2007) and have been struggling with active disease daily. My symptoms are mainly severe abdominal pain – mostly in the left-side - bloating and nausea. Tests have shown that a foot long piece of my small intestine in the jejunum section is narrowed (no stricture or fistulas) and I have ulceration in several areas of the colon. I have active inflammation and active symptoms.
The first drug I tried was Pentasa, which I was on for several months and which didn't work. Then I tried another mesalamine drug, Apriso, which worked only to the extent that it stabilized my bowel movements (I only had diarrhea occasionally, but when I take Apriso I only get it rarely, which is the only reason I continue it). In Fall of 2010, we added the steroid Entocort, which seemed to work a little bit in lessening the inflammation (worked after a month or so), but then stopped working. I've lost about 20% of my body weight in the past year and a half. I am emaciated and continue to shed weight. The inflammation and pain continues. These past few weeks have been the worst of my life - very frequent severe abdominal pain and a lot of nausea. I am grateful that diarrhea and vomiting have not been symptoms of my disease (really I am amazed at how differently Crohn's presents itself from one person to the next), but the pain is so strong that sometimes I think I would rather die than suffer another second.
Here is where I would like your opinion: my GI recommends that I start Remicade - since the other meds have not been effective in controlling the inflammation. Naturally, I am very anxious about taking such a strong drug. But I am also desperate to get the pain under control. I feel like most GI's would recommend Remicade as well, but that's just me speculating. I am considering getting an opinion from another GI. What would you do in my situation?
Last edited:
