Hi... I hope everyone is feeling well.
I wanted to introduce myself and get your thoughts. Admittedly I may be in a bit of denial, but I received a Crohn's diagnosis this week and it’s caught me kind of off guard. Reading your stories, while some of my symptoms are similar, maybe I'm fortunate in that I have not had what seems to be the life-altering changes some of you have described. Maybe they are coming… who knows.
History:
I am a 37 year-old male. I have no family history of IBD. In 2007 I had a colonoscopy for the typical lower right quadrant pain that may indicate Crohn's. Nothing was found, and the pain resolved on its own. Nothing has really bothered me there since, and still doesn't today.
Fast forward to January 2015. After coming back from a cruise to Belize and Cozumel, literally 7-8 days after we were in those places, I got a sharp pain in my upper left quadrant. The pain diminished pretty quickly, but has mostly come and gone as kind of a dull ache since. It's not noticeable at this point unless I go looking for it, if that makes sense. While I have some mental power over my perception of discomfort, "proof" something changed was in the toilet. I wouldn't call what started outright diarrhea, but things kind of became looser and greener, like everything was moving too fast. More undigested food would show up than what I'd consider "typical." There has been no blood at all.
I went to the GI at the end of January, and again in late February. She thought it was my stomach, but maybe I didn’t seem to be in that much discomfort so the approach was fiber, a PPI, and a probiotic. I probably should have left at that point. We did CBC and CRP blood work, all normal. CRP was 1, so nothing inflammatory was going on it seems. We did H. pylori breath test, negative. We did O&P stool tests, and a giardia antigen culture, all negative. Celiac was negative as well.
I figured out that dairy was an agitator, so I've cut it out. I've gone through gluten-free, low-FODMAP, and other dietary strategies without a ton of additional success. Dairy elimination solved most, but not all, of the problem.
Other than that, I had discomfort in my right elbow, but chalked that up to sleeping on it every night. Otherwise, I think I felt pretty good.
I then went to my primary doctor, who put me on a week of Cipro thinking I had a stomach infection. At least that seemed in line with what I thought was happening, but I don’t think that did much of anything.
I then went to a new GI. Given my strong suspicion of having brought something home from that trip given the timing of symptoms, the doctor was willing to treat me empirically for giardia with Flagyl. After two days on that, I got the worst back pain and discontinued it. My back still hurts to a lesser extent today. It's hard to tell if I felt better on the Flagyl from a GI perspective, maybe a little, but the back pain was (and continues to be) much worse than anything that had come from the GI issues. My elbow pain also got worse, and I seemed to get some neuropathy in my right hand. I also had neck stiffness that disappeared the day I discontinued the medicine, which made me feel like it caused something like aseptic meningitis. The FDA warns about Flagyl causing aseptic meningitis, peripheral neuropath, and a whole range of other side effects, so I attributed all of that to the medicine. All of that said, I don’t know if I was on Flagyl long enough for it to have mattered in combating a parasitic infection. Unlikely.
Prior to starting the Flagyl, we repeated the O&P test and did a stool culture, all negative again. The stool culture report did says that no enteric flora were present. That was kind of odd, but it had been about 3-4 weeks since I took the Cipro so maybe that killed everything off.
We then decided to do an endoscopy and colonoscopy earlier this month, which revealed a hiatal hernia, as well as inflammation in my stomach and ileum suggesting Crohn's. The ileum, of course, was where I had the pain eight years earlier that was investigated and found to be normal, and hasn’t bothered me since. While we waited for the biopsies, he asked me to do an IBD blood panel, which was positive for ASCA IgG and equivocal for ASCA IgA, also suggesting Crohn's. Everything else was negative. The doctor's office called on Wednesday and said the biopsies suggested Crohn's as well, so he wants me on Apriso or Pentasa to see if that helps.
I have a follow-up next week to discuss the biopsies and next steps in greater detail. I guess I'll take the Apriso until then, but I'm just kind of skeptical about the whole thing and just feel like something else is going on. Perhaps it’s the absence of severe pain, the coincidental timing after my trip, or gut feeling, but Crohn's just doesn't seem right to me. Then again, the ASCA and biopsy results seem to point there, and maybe the back and joint pain are manifestations of it. Maybe the timing of all of my pain onset happening after my trip and starting the medicine is a coincidence. I guess there are only so many times I can submit my stool and blood for examination until I should just accept that nothing is there. I’m prepared to deal with Crohn’s in my life, but want to make sure it is what I should be dealing with instead of something else mimicking Crohn's that we are missing.
In general, I feel more or less fine. This episode is probably more taxing mentally than physically, which is probably why I'm having trouble coming to grips with it.
Thanks for your time and advice.
I wanted to introduce myself and get your thoughts. Admittedly I may be in a bit of denial, but I received a Crohn's diagnosis this week and it’s caught me kind of off guard. Reading your stories, while some of my symptoms are similar, maybe I'm fortunate in that I have not had what seems to be the life-altering changes some of you have described. Maybe they are coming… who knows.
History:
I am a 37 year-old male. I have no family history of IBD. In 2007 I had a colonoscopy for the typical lower right quadrant pain that may indicate Crohn's. Nothing was found, and the pain resolved on its own. Nothing has really bothered me there since, and still doesn't today.
Fast forward to January 2015. After coming back from a cruise to Belize and Cozumel, literally 7-8 days after we were in those places, I got a sharp pain in my upper left quadrant. The pain diminished pretty quickly, but has mostly come and gone as kind of a dull ache since. It's not noticeable at this point unless I go looking for it, if that makes sense. While I have some mental power over my perception of discomfort, "proof" something changed was in the toilet. I wouldn't call what started outright diarrhea, but things kind of became looser and greener, like everything was moving too fast. More undigested food would show up than what I'd consider "typical." There has been no blood at all.
I went to the GI at the end of January, and again in late February. She thought it was my stomach, but maybe I didn’t seem to be in that much discomfort so the approach was fiber, a PPI, and a probiotic. I probably should have left at that point. We did CBC and CRP blood work, all normal. CRP was 1, so nothing inflammatory was going on it seems. We did H. pylori breath test, negative. We did O&P stool tests, and a giardia antigen culture, all negative. Celiac was negative as well.
I figured out that dairy was an agitator, so I've cut it out. I've gone through gluten-free, low-FODMAP, and other dietary strategies without a ton of additional success. Dairy elimination solved most, but not all, of the problem.
Other than that, I had discomfort in my right elbow, but chalked that up to sleeping on it every night. Otherwise, I think I felt pretty good.
I then went to my primary doctor, who put me on a week of Cipro thinking I had a stomach infection. At least that seemed in line with what I thought was happening, but I don’t think that did much of anything.
I then went to a new GI. Given my strong suspicion of having brought something home from that trip given the timing of symptoms, the doctor was willing to treat me empirically for giardia with Flagyl. After two days on that, I got the worst back pain and discontinued it. My back still hurts to a lesser extent today. It's hard to tell if I felt better on the Flagyl from a GI perspective, maybe a little, but the back pain was (and continues to be) much worse than anything that had come from the GI issues. My elbow pain also got worse, and I seemed to get some neuropathy in my right hand. I also had neck stiffness that disappeared the day I discontinued the medicine, which made me feel like it caused something like aseptic meningitis. The FDA warns about Flagyl causing aseptic meningitis, peripheral neuropath, and a whole range of other side effects, so I attributed all of that to the medicine. All of that said, I don’t know if I was on Flagyl long enough for it to have mattered in combating a parasitic infection. Unlikely.
Prior to starting the Flagyl, we repeated the O&P test and did a stool culture, all negative again. The stool culture report did says that no enteric flora were present. That was kind of odd, but it had been about 3-4 weeks since I took the Cipro so maybe that killed everything off.
We then decided to do an endoscopy and colonoscopy earlier this month, which revealed a hiatal hernia, as well as inflammation in my stomach and ileum suggesting Crohn's. The ileum, of course, was where I had the pain eight years earlier that was investigated and found to be normal, and hasn’t bothered me since. While we waited for the biopsies, he asked me to do an IBD blood panel, which was positive for ASCA IgG and equivocal for ASCA IgA, also suggesting Crohn's. Everything else was negative. The doctor's office called on Wednesday and said the biopsies suggested Crohn's as well, so he wants me on Apriso or Pentasa to see if that helps.
I have a follow-up next week to discuss the biopsies and next steps in greater detail. I guess I'll take the Apriso until then, but I'm just kind of skeptical about the whole thing and just feel like something else is going on. Perhaps it’s the absence of severe pain, the coincidental timing after my trip, or gut feeling, but Crohn's just doesn't seem right to me. Then again, the ASCA and biopsy results seem to point there, and maybe the back and joint pain are manifestations of it. Maybe the timing of all of my pain onset happening after my trip and starting the medicine is a coincidence. I guess there are only so many times I can submit my stool and blood for examination until I should just accept that nothing is there. I’m prepared to deal with Crohn’s in my life, but want to make sure it is what I should be dealing with instead of something else mimicking Crohn's that we are missing.
In general, I feel more or less fine. This episode is probably more taxing mentally than physically, which is probably why I'm having trouble coming to grips with it.
Thanks for your time and advice.