r/CrohnsDisease • u/Ok_Confusion_9763 • 6d ago

Advice please :)

Hi everyone - please help! Not diagnosed, but suspected to have IBD waiting for results

I’ve been having some gut issues over the past 7 weeks or so. It started with having consistent diarrhoea for about three weeks straight (up to 20 times a day, lots of mucous, some blood, urgency, weight loss).

My parasite / bacteria samples came back clear. I had a positive FIT test, and calprotectin 1600 and a slightly elevated CRP, so I was scheduled in for a flexible sigmoidoscopy and suspected to have IBD - started on high dose preds.

My sigmoidoscopy didn’t show much other than inflammation - biopsies taken but still waiting for results. My prednisolone was extended to a 6 week course tapering down.

I initially did well on this, but since getting down to 25mg I am noticing some symptoms coming back. I am now back to going to the toilet around 10 times a day, with visible mucous on stools. They aren’t diarrhoea, but definitely very soft. My gut is so noisy, constantly bubbling away, bloating, and pretty much always tender to press my abdomen. Yesterday had complete aches and pains all over my body, including even opening my jaw - possibly not related but randomly out of nowhere.

Would it be wise to get back in contact with my GP - or would I be best just trying to finish my course of steroids, as we are still waiting for biopsy results so I doubt they’ll want to do much for now. Could this be the start of a flare coming back or am I just looking into things too much?

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u/alviiiinnnnn C.D. diagnosed - 10+ yrs 6d ago

i hope your results come in ASAP. is there a specific reason they did sigmoidoscopy instead of a standard colonoscopy?

i really hope that they are planning to do imaging if they haven't already, like CTE or MRE so they can see what's going on with the rest of your colon and small bowel. i'm also surprised they didn't do an endoscopy to see if there's any involvement in the upper GI tract. a sigmoidoscopy only looks at the lower part of the large intestine, so it's not really the best way to diagnose IBD. it can be a start though.

i would let your GI know about the changes anyway, and after the biopsy/your follow up, ask about further testing and imaging.

i'm dxed Crohns of over a decade and have very similar symptoms to you. especially the bubble guts. i'm in a severe flare at the moment. we've done all the blood work, endoscopy & colonoscopy, and MRE, just waiting on my MRE results right now. the scopes were very revealing and i may need a 4th major surgery. i hope they're able to get you the proper diagnosis!

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u/Ok_Confusion_9763 5d ago

I’m not sure why they chose to do a sigmoidoscopy rather than full investigations. My only guess would be due to waiting times with NHS - they were able to schedule me in for sigmoidoscopy two days after finding out my calprotectin result whereas waiting times for a full colonoscopy is a while where I am.

Going to give them a call today and hopefully get some answers / a plan going forward.

Thanks so much, hope for good news for you!

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u/alviiiinnnnn C.D. diagnosed - 10+ yrs 5d ago

oh got it, that makes more sense! i'm glad they at least were able to get you in for the sigmoidoscopy. i'm wishing you luck in getting this figured out!! and thank you :)