Unconvinced, but maybe I should be.

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.

Welcome to the forum. I've never had pain with my Crohn's, except when I had an abscess. None. Not even with my fistulas. So a lack of pain doesn't mean it's not Crohn's. I don't bleed much either. What would convince you that you have it? The sooner you start treatment, I think the better the outcome will be in the long run. You may go through the stages of grief: denial, anger, bargaining, depression, acceptance. Not necessarily in that order. And after acceptance, you can go through them again. It's a lot to take in all at once. Hang in there, it gets better.

Thanks for the reply. I'm just suspicious of the timing. I guess I came back from a trip and spent months thinking I just ate something that disagreed with me and we'd ultimately figure out how to deal with it, but it isn't really that at all. Or maybe I did and something happened with the gut bacteria to reach this point. Who knows. It just came out of left field, so there's a bit of shock.

The tests say what they say. I guess I like causes and effects, perhaps wrongly looking at Crohn's as an effect of some other cause that needs to be identified. Of course, now I'm just trying to figure out what else is going on with my body that is attributable to Crohn's and what isn't. I'm a bit of a hypochondriac, so this diagnosis isn't helping.

Hi dg19

The timing could have just been a coincidence. My daughters symptoms started after eating take away (KFC) and up until this day she is still convinced it was the cause of her crohn's.

Good luck with your appointment and let us know what happens.

I actually blame the whole thing on vanilla frozen yogurt in Belize, so I understand completely!

My six year old daughter (who also ate said frozen yogurt) was complaining off and on of stomach issues for weeks after we got home, but has stopped. She never really complained of stomach distress before that trip. That's kind of why I was hung up on there being an intruder, like we ate the same thing and both got sick. She got over it, I didn't. Now four months later, my other daughter has been complaining that her stomach hurts. She's three, never complained about stomach issues before. It's just hard to see all of this happening independently, but maybe it's just one of life's great mysteries or coincidences.

That's ultimately why the Crohn's diagnosis is suspicious to me, and leaves me wondering whether a biopsy would reveal other things like intestinal TB (which can present similarly to Crohn's) or another infection if they aren't looking for it.

I may still be in denial, but I'm taking my meds... just trying to make sure I'm taking the right ones!

Perhaps you had Crohn's all along but it never gave you any issues and this episode gave them cause to diagnose it?

I hope you continue to feel well from now on and that both your daughters are free from GI issues too

Very possible that something triggered a Crohn's response and it was there all along. It's also possible that the "something" is still an active infection in my gut, and I can't really shake that feeling. Both can certainly co-exist.

Granted it's only been a week, but I don't think this Apriso I'm on is doing anything at all. I'll tell the GI that on Friday. Maybe he'll want to try Pentasa. Maybe we move on to something stronger like prednisone, which seems to be immune-suppressive. If I have an infection and I start that stuff, things likely will be much, much worse. That's my fear, if I am right. The goal is not to end up in the hospital.

Thank you all again for reading and your feedback! This is a very supportive community.

If your doctor wants to try a stronger treatment then I would recommend trying exclusive enteral nutrition (EEN) over steroids. I think this is often a much better choice since you avoid the side effects of steroids and it's better for mucosal healing but you may feel even more motivated since you have concerns about a potential infection.

There's lots of advice about EEN on the forum but if you'd like to know more, let me know!

So, I'm back from the doctor and I'm pretty sure something was lost in translation when the nurse called me with the biopsy results last week, or perhaps I wasn't given the full story.

I have inflammation in my ileum. However, the biopsy results were inconclusive. It might be Crohn's, it might be "pre-Crohn's" and be something more in a few years, or it might not be Crohn's at all. Since my ASCA IgG was positive, the thought was that it was worth starting me on Apriso to see if that helped. Helped what, I don't know, as I wasn't experiencing any discomfort there at all. Frankly, since starting Apriso I have had new discomfort in my lower right quadrant. So, that's being discontinued.

Separately there is gastritis, but that is apparently due to acid.

So, he isn't convinced I have Crohn's. He thinks I have IBS, possibly triggered by an infection, and it will resolve in time. He's happy to keep ordering tests if I want, but he didn't think it was necessary unless I needed "peace of mind." Who knows.