- Location
- Jacksonville, Florida
Hello, and thank you so much for giving my post your time. 
Here's the gist. I was diagnosed with Crohn's Disease on March 1st via colonoscopy. It appeared to be a mild case but given my symptoms (a history since birth of horrible stomach pain, diarrhea, and constipation, as well as mouth ulcers and difficult to treat Iritis) my GI was certain there was more present in my small intestines, more than likely in the moderate to severe range. One Flex Sig, CT scan, multiple X-rays, and an attempted small bowel follow through later my insurance decided they didn't want to approve the Pill Cam so my one way of knowing if my Crohn's is worse than originally thought has been cut. My GI decided to proceed with treatment regardless. What matters is not how bad my Crohn's is, but if we can get it under control. I was put on Asacol which only caused blood in my stool and lowered my white blood cell count. I have tried Proctofoam and Mesalamine enemas to lessen the discomfort. None of it has worked. My GI is very hesitant to put me on Prednisone because of my age (I only just turned eighteen). He's worried about complications with the drug. Instead he put me on Entocort and Bentyl, which have worked wonders for the past month. They have been miracle drugs and I thought for sure this was it. I've felt so awake, so energetic, and just overall healthy since I've started taking them. At the start of summer I flew to New York with my mother for my 18th birthday. We were there for ten days and it started off well but by the end of the ten days my stomach was severely distended, I felt bloated and very constipated. I thought it was just because I had been traveling and I was feeling well so I had been eating more than I usually did. I wasn't too worried about it. But it's like the second we arrived back home a switch was flipped inside of me. The stomach pain and diarrhea returned with a vengeance. I've dropped a good inch or two around my mid section and I haven't been able to eat much at all. I don't ever feel hungry and when I try to force myself to eat I can usually only take a few bites before I absolutely can't anymore. I don't know what's going on with me. I've never not been able to eat like this and I'm worried that it's a sign that I'm failing the Entocort and Bentyl. I don't know what I'll do if that's the case. My GI told me at our last visit that Remicade is the next step should I not do well with this new medicine, and given the side effects of Remicade I'm really worried about going on it. I was going to bring all of this up to my GI at our next appointment but it won't be for another several weeks and I really want to know what's going on now. What do you think is happening? Am I failing the Entocort and the Bentyl? Am I beginning to flare again?
Here's the gist. I was diagnosed with Crohn's Disease on March 1st via colonoscopy. It appeared to be a mild case but given my symptoms (a history since birth of horrible stomach pain, diarrhea, and constipation, as well as mouth ulcers and difficult to treat Iritis) my GI was certain there was more present in my small intestines, more than likely in the moderate to severe range. One Flex Sig, CT scan, multiple X-rays, and an attempted small bowel follow through later my insurance decided they didn't want to approve the Pill Cam so my one way of knowing if my Crohn's is worse than originally thought has been cut. My GI decided to proceed with treatment regardless. What matters is not how bad my Crohn's is, but if we can get it under control. I was put on Asacol which only caused blood in my stool and lowered my white blood cell count. I have tried Proctofoam and Mesalamine enemas to lessen the discomfort. None of it has worked. My GI is very hesitant to put me on Prednisone because of my age (I only just turned eighteen). He's worried about complications with the drug. Instead he put me on Entocort and Bentyl, which have worked wonders for the past month. They have been miracle drugs and I thought for sure this was it. I've felt so awake, so energetic, and just overall healthy since I've started taking them. At the start of summer I flew to New York with my mother for my 18th birthday. We were there for ten days and it started off well but by the end of the ten days my stomach was severely distended, I felt bloated and very constipated. I thought it was just because I had been traveling and I was feeling well so I had been eating more than I usually did. I wasn't too worried about it. But it's like the second we arrived back home a switch was flipped inside of me. The stomach pain and diarrhea returned with a vengeance. I've dropped a good inch or two around my mid section and I haven't been able to eat much at all. I don't ever feel hungry and when I try to force myself to eat I can usually only take a few bites before I absolutely can't anymore. I don't know what's going on with me. I've never not been able to eat like this and I'm worried that it's a sign that I'm failing the Entocort and Bentyl. I don't know what I'll do if that's the case. My GI told me at our last visit that Remicade is the next step should I not do well with this new medicine, and given the side effects of Remicade I'm really worried about going on it. I was going to bring all of this up to my GI at our next appointment but it won't be for another several weeks and I really want to know what's going on now. What do you think is happening? Am I failing the Entocort and the Bentyl? Am I beginning to flare again?
