Any advice for gastro symptoms which respond to steroids, but no diagnosis? Does normal colonoscopy cover the small bowel?

[Megaloo]

hi all,

I hope it's ok to post here - I don't have a diagnosis of crohn's or colitis but am looking for information.

I'm diagnosed coeliac (6+ years ago) and autoimmune hypothyroid, with ongoing and increasing gastro symptoms - the main problem being that I feel extremely unwell like I've got flu when the diarrhoea happens. This is now regular (so I'm probably feeling pretty poorly for about a third of the time). I don't get bleeding or pain (some discomfort maybe).

I've had 3 colonoscopies (including one specifically looking for microscopic colitis which was clear) and endoscopies which show that my villi recovery from coeliac is really good so assuming this isn't glutening.

Alongside the inevitable loperamide (and FODMAP etc etc), I've had treatment using Bile Acid Malabsorption drugs (not tested with sehcat), and Ondansetron (assuming some fairly extreme form of IBS). This last has been great for a year, but is increasingly ineffective. The main symptom is that I feel just very very unwell during flares, and these are coming along more and more regularly.

I've recently taken steroids (a 5 day high dose course of prednisone) and the impact on diarrhoea and feeling very unwell was unbelievable. Almost immediately it all went away, and has so far stayed away (day 7). The only time I've felt this good was on the previous time I took steroids (approx 1.5 years ago). I'm not taking any loperamide or any of the prescription drugs and feel great. I'm assuming this will wear off once the effects of the steroids is out of my system.

My main question (apart from if any insights anyone might have) is – do people know if the small bowel is inspected during a normal colonoscopy? Is there any point in my going back and asking for a capsule endoscopy to inspect it in the vague hope there might some answer there? Or any other sort of investigation? I can't find any of my notes from the last investigations so not quite sure what colonoscopy covered.

(EDIT TO ADD - hmm is the small bowel covered during the coeliac scope (ie from the mouth)? Sorry, I really should know better about what's been examined 🙄)

Any other suggestions?

Thanks in advance, and for reading this far.

[jackdup]

there is a valve between the large and small intestine that can prevent inspection of the small bowel during a colonoscopy. If they can get by the valve then they can see at least the end section of the small bowel which is often, but not always, where Crohns may be located. Also I believe the endoscopy (down the throat) will go part way into the small bowel but certainly not all of it. When I was diagnosed with Crohns it was with a barium swallow with follow through but I haven’t had one of those for probably 15 years. The last few years I have had either an MRI or ultrasound to check the status of my Crohns so assume that is the new procedure used to inspect the small bowel.

[Valbaty54]

A pillcam is the only way to inspect the small bowel properly as the other scopes can't reach. As jackdup explains, scans are often used. Have you had blood tests or a stool test to check for inflammation?

[Frasina]

Pillcam is best; the only way because it photographs the entire tract. Colonoscopy is for the entire large bowel but may well miss Crohn's although likely to pick up UC. A lot depends on your circumstances in terms of what tests are offered as they will also look for high markers through stool tests/bloods etc... that said, some people do not present with high markers so it is only found through the pillcam. Good luck.

[Viklou]

Pill Cam is the only thing that visualised my small bowel. Several ulcers and stricture where identified. Nothing showed on Colonoscopy and just a hiatus hernia on endoscopy

[Megaloo]

Thanks so much all. Helpful to know. My inflammation levels have been occasionally raised (during annual thyroid bloods I got a recall once or twice I think) but are generally ok. I got slightly raised ANA once I think but not sure if that’s relevant here.

Would it make any difference if these tests were done when symptomatic rather than when well? I tend to feel so lousy when I’m ill and i probably wait to make the regular appts when I’m feeling well (if that makes sense).

thanks again much appreciated

EDITED TO ADD: would an MRI or CT be helpful or would the colonoscopies I’ve had shown more than these scans would?

[MyStar86 in reply to Megaloo]

You can have a small bowel MRI this would show up problems and it’s not a bad test except it still have to drink a version of bowel prep whilst sitting waiting for your scan and once finished drinking they will get you in for imaging with a contrast infusion. They usually do this before a pill cam but the mri does show up all of the small intestine so it’s worth asking for it if you haven’t already had it. Hope that helps a little

[Megaloo in reply to MyStar86]

Thank you

[penny777]

Hi my colonoscopy was stopped half way through due to severe inflammation an looping i had biopsys done and ct scans with contrast i was diagnosed with divercular disease an crohns im on azathioprine an infliximab never had a pill cam

[Megaloo]

Thanks for your previous helpful replies - my consultant has agreed that my marked improvement response to steroids (amazingly still ongoing, after 5 weeks) must mean something has been missed and has suggested re-doing all scopes and also a capsule endoscopy. Though wants to wait til I'm symptomatic again (sadly probably inevitable - though I can live in hope!)

Huge thanks all.