Hi all, I found this forum a few months ago, but seem to be reading it daily over the last couple of months. I have a long history of GI problems, but was just (definitively) diagnosed with Crohn's in March after I was hospitalized with an obstructed small bowel. During my hospital stay, I was treated with Pentasa, IV steroids, antibiotics, and pain meds. I was released with Pentasa, 40 mg Prednisone, and a couple of different antibiotics. After a week, the doc lowered my Prednisone by half. At 2 weeks, I started on 50 mg of Azathioprine and continued on the Pentasa for another 3 weeks. My last visit, he halfed my Prednisone again (now on 10 mg for 30 days) and stopped the Pentasa. He also took some more blood, I think to check my serum lipase, liver function and not sure what else. I'm supposed to go back in 8 weeks for another check. I'm still having some pain in my lower right abdomen and seem to need more rest than usual. Also feeling depressed...don't know if it's the Prednisone or the diagnosis. I take a small dose of Wellbutrin, which I've been on for several years.
Before I ended up in the hospital, I had had a number of "episodes" over the last couple of years where I would have severe pain in my lower right abdomen, which would continue to get worse until I finally threw up repeatedly which would reduce the pain by a lot. I would then feel punky for a day or two but really just thought it was a virus. After about the 5th time this happened, I went to my GI doc (I have hep C) and he did a CT scan which showed a "real finding" of bowel wall thickening in the TI. He followed up with a colonoscopy which showed "focal activie ileitis". He gave me the options of trying a gluten free diet for 3 months, starting steroid treatment, or doing a pill cam for further diagnosis. At that time, it wasn't clear to me that I definitely had Crohn's. He seemed to think the gluten free diet was worth a try, so that's what I did. I knew I didn't want to take steroids if I didn't have to. All went well for several months with no more pain/puking episodes. Then suddenly, it happened again and I ended up in the hospital. Now, I guess, I'm clear on the Crohn's diagnosis.
I guess my biggest worry is not knowing if any of this is working, since the obstruction episode happened without warning. I asked him if we were going to do any more scopes to see where things stand and he said, "oh we can do all the scopes you want...my wife can find plenty of ways to spend the money." I took this to mean that another colonoscopy would be a waste of his time and my money. Also, after reading all the side effects of Azathioprine, I thought he would be doing blood work more often than every 8 weeks. He has me on a fairly low dose because I've had acute pancreatitis (following an ERCP) in the past.
Am I just freaked out because I am trying to get my brain around this? And maybe it's not as serious in reality as it seems in my mind. I've always been relatively healthy, other than the GI issues, and try to take good care of myself. It would be nice if I had a little more control over life--haha.
Anyway, it has helped a lot to read this forum (although it does scare me sometimes) and know that there are so many people out there living with the same thing and finding ways to cope and live normally.
Before I ended up in the hospital, I had had a number of "episodes" over the last couple of years where I would have severe pain in my lower right abdomen, which would continue to get worse until I finally threw up repeatedly which would reduce the pain by a lot. I would then feel punky for a day or two but really just thought it was a virus. After about the 5th time this happened, I went to my GI doc (I have hep C) and he did a CT scan which showed a "real finding" of bowel wall thickening in the TI. He followed up with a colonoscopy which showed "focal activie ileitis". He gave me the options of trying a gluten free diet for 3 months, starting steroid treatment, or doing a pill cam for further diagnosis. At that time, it wasn't clear to me that I definitely had Crohn's. He seemed to think the gluten free diet was worth a try, so that's what I did. I knew I didn't want to take steroids if I didn't have to. All went well for several months with no more pain/puking episodes. Then suddenly, it happened again and I ended up in the hospital. Now, I guess, I'm clear on the Crohn's diagnosis.
I guess my biggest worry is not knowing if any of this is working, since the obstruction episode happened without warning. I asked him if we were going to do any more scopes to see where things stand and he said, "oh we can do all the scopes you want...my wife can find plenty of ways to spend the money." I took this to mean that another colonoscopy would be a waste of his time and my money. Also, after reading all the side effects of Azathioprine, I thought he would be doing blood work more often than every 8 weeks. He has me on a fairly low dose because I've had acute pancreatitis (following an ERCP) in the past.
Am I just freaked out because I am trying to get my brain around this? And maybe it's not as serious in reality as it seems in my mind. I've always been relatively healthy, other than the GI issues, and try to take good care of myself. It would be nice if I had a little more control over life--haha.
Anyway, it has helped a lot to read this forum (although it does scare me sometimes) and know that there are so many people out there living with the same thing and finding ways to cope and live normally.