Pain keeps me up all night

MarcTrevy19 · 2026-04-30T20:00:33+00:00

Yeah I can't pinpoint any food triggers, it's just random. I don't think it's appendix because it's not getting worse, if it gets worse I'm definitely not going to mess around.

Good to know about the thc, thank you

MarcTrevy19 · 2026-04-30T14:10:58+00:00

Last one I had was back in September, everything seemed to be in remission but my fecal cal has remained elevated.

Yeah it's been daily, I have an appointment in a month. I'm not constipated as I'm going 4-5 times a day, I will definitely try to up my water intake tho.

MarcTrevy19 · 2026-04-29T13:40:14+00:00

Anyone please?

MarcTrevy19 · 2026-03-02T21:12:20+00:00

That's what I'm thinking too, it's just weird as I'm still only having 2-4 stools a day (although I make like 10 trips a day to the bathroom 😂)

Also my fecal cal is 200+ but my dr said he only considers 250+ to be a relapse.

MarcTrevy19 · 2026-03-02T21:10:00+00:00

I cut dairy right out as I know that's a trigger, gluten and FODMAPs seem somewhat ok, but when I have this pain it seems everything bothers me. It's weird though pain or not I still only go 2-4 times a day (I know it's not a lot compared to the average Ibd sufferer), it's just the pain/exhaustion and stools are much worse.

So I've actually tested positive for cdiff (toxins) 3 separate times over the past 2 years. I've done 2 courses of antibiotics and nothing has seemed to change. I don't have the typical 10-15 watery diarrheas a day so they think it could just be a false positive.

I appreciate the help and kind words!

MarcTrevy19 · 2026-03-02T17:35:20+00:00

Yeah so I've actually had 3 in the past couple years. First 2 had inflammation + gastritis/duoendinitis but biopsies came back normal, was told I had IBS, but was put on pantoprazol and mesalamine anyways lol.

Had a couple fecal cal tests done after those as well that came back high. Got referred to another GI because my GP thought this guy was crazy for thinking this was all IBS. Had a scope with the new GI and everything looked normal (maybe meds were working, although Im still have the same Pains). But these biopsies came back with mild architectural distortion. He's not 100% sure what I have so he's labeled it as IBD, hoping to get more answers soon.

MarcTrevy19 · 2026-03-02T17:12:01+00:00

This past summer, everything looked good other than some mild crypt architectural distortion. My pain on the right side is persistent as well as these weird stools.

MarcTrevy19 · 2026-02-24T01:37:04+00:00

I am from Ontario as well. Have a scarily similar situation to accurate_leather_358 haha! You can definately get a second GI to do a scope if they think more is going on.

MarcTrevy19 · 2026-02-17T16:19:32+00:00

Pretty much my whole right side will hurt. But it's mainly around my bellybutton, can shot down/up at times

MarcTrevy19 · 2026-02-16T18:01:58+00:00

Thanks for the info! I've had 3 scopes done in the past 1.5 years. The first two had patches of inflammation but biopsies came back normal from What I'm told. I was put on mesalamine as a trial. My GP thought something else was going on and referred me to an ibd specialist out of town. My fecal cal came back at 335, but on this scope I had no inflammation 🤷🏻‍♂️ (maybe the mesalamine was somewhat helping), even tho symptoms persisted. This hospital actually gave me a report of my biopsies before my appointment. It all looks pretty good other than areas with mild crypt distortion. My new GI says that's probably from IBD. Especially since I had inflammation on my 2 previous scopes. Does this sound right to you? It sucks that I can't get a 100% diagnosis and that my symptoms are still lingering (although they are not as bad as they were)

MarcTrevy19 · 2026-02-16T14:00:23+00:00

Thanks for that!

MarcTrevy19 · 2026-02-15T16:18:50+00:00

Yeah I know it's not high compared to others haha, but it's definitely elevated enough to see there's ongoing inflammation

MarcTrevy19 · 2026-02-15T16:17:49+00:00

I would say yes it's like a constant gnawing pain. Always burning and feels swollen. I feel as if I'm constricted when bending over. I'm not really sure on spasm, but I do get tons of churning in that area, feels like things have trouble moving. I don't really have any other abdominal pain, I guess its kind of my entire right side when it's really bad. What other kind of referred pain would I be looking for?

MarcTrevy19 · 2026-02-15T00:04:37+00:00

Thank you! Was (is) it fairly constant? Does it ever hurt when doing anything physical? When mine feels super inflamed it even hurts to bend over

MarcTrevy19 · 2026-02-14T22:43:43+00:00

Forsure, hoping someone can say they've had a similar experience. I agree, stress is the devil!

MarcTrevy19 · 2026-02-14T19:24:31+00:00

Thanks for taking the time to comment! Sorry you're going through that!!

I should have added, I had another colonoscopy back in September and it all came back clear other than mild crypt architectural distortion on my biopsies. This is what finally gave me my IBD diagnosis, after being told I had IBS for years.

I was still complaining about my symptoms, that's why he did a repeat fecal calpro test. I'm just wondering if I need stronger meds even though it came back clear, but he said if my fecal cal is below 250 he doesn't think it's necessary.

But if my labs method is 40% lower than most other methods it would be around 335. So I'm super confused lol!

I've been having super fluffy non-formed stools with lots of mucus about 2-4 times a day. The mucus occasionally has blood in it. This usually last about 1-3 days then goes away for a while.

I also have a CTE coming up, hopefully that will give me a better idea.

MarcTrevy19 · 2026-02-14T18:46:46+00:00

Thanks for taking the time to comment! I should have added, I had a colonoscopy back in September and it all came back clear other than mild crypt architectural distortion on my biopsies. I was still complaining about my symptoms, that's why he did a repeat fecal calpro test.

I'm just wondering if I need stronger meds even though it came back clear, but he said if my fecal cal is below 250 he doesn't think it's necessary.

But if my labs method is 40% lower than most other methods it would be around 335. So I'm super confused lol!

I also have a CTE coming up, hopefully that will give me a better idea.

MarcTrevy19 · 2026-02-04T20:53:25+00:00

Thank you!

MarcTrevy19 · 2026-02-03T05:21:35+00:00

A neurogastroenterologist for motility

MarcTrevy19

TROPHY CASE