lurking inflammation

Hi. I'm a new member here who has read these posts for a few months.

I was DXed with UC in 2010 but thankfully with Asacol and 6mp I have been in remission since 2012. Over the last year I have had a multitude of small but annoying health issues; sinus issues, fatigue, joint issues, mouth ulcers, left blank pain, bloating to name but a few. I had a suspicion that when my 2-yearly scope happened in September last year that active UC would be found but it came back clean and the biopsy was clear. Yet I continue to have these vague issues which remind me so much of my UC bad days but without the diaherra, blood and mucus. My CRP is also low and my other bloods test out fine.

My suspicion remains that my ongoing mild but vague issues may still be IBD related but the lack of lower GI symptoms and a clean scope and low CRP refute this. I have been wondering is it possible that my inflammation may have moved from my colon into my upper GI and been crohns all along...maybe upper terminal ileum or elsewhere in the small intestine. I have not had a CT scan nor a pill cam but am considering asking my GI for such.

My questions is to garner any evidence on here that people with similar vague symptoms to myself subsequently discovered that the inflammation was actually lurking hidden in the small intestine all along and missed on scope and blood tests. Is this possible? Did it happen to you? And if so how did you find out?

With thanks,

Kevin

If your colonoscopy is clear and inflammation tests normal then it's unlikely to be unseen inflammation lurking.

Being within a remission isn't a pinky-swear promise of no troubles at all. Some of the stuff you describe is extra intestinal manifestations of IBD like joint issues. We can have IBS like issues that linger during a remission, like bloating.

Your terminal ileum was visible during your colonoscopy. Most, not all, Crohn's patients have TI involvement.

I'd think you'd have a hard case to sell on the pillcam, or an MRI small bowel follow through series. Given the lack of labs backing your complaints. If you had inflammation, then easier to sell that need.

Well the way I see it the disease is always latent even in remission so if extra intestinal symptoms show up don’t get too stressful about it. If TI is clear not likely you will have issues in the small bowel. Some of the symptoms you mention could be due to Vit D , zinc, iron deficiency etc. Are your other lab blood tests ok? Covid is still around in the air too so perhaps the malaise like feeling is contributed by it? Consider checking Thyroid too. No harm doing a CT if you want to be doubly sure but not likely it will bring anything up I think . I would think of it more as gut imbalance building up. Perhaps clean up your diet if you are one of those people affected by diet.

Post Edited (Seeker275) : 2/20/2022 6:28:13 AM (GMT-7)

Ask your doc about getting a CT scan so you can find out if you have inflammation higher up that could be causing the symptoms. I don't think pill cams are very common and you might have insurance issues if you didn't already have a CT.

Did those symptoms clear up on their own or did you need treatment? I sometimes get mouth ulcers if I eat too much salty or spicy food. My joint pain is because I am getting old and have arthritis in my knees. Sometimes my shoulder & back ache too. Allergies can turn into sinus infections for me if I don't keep up with my allergy meds (xyzal). I did have a lot of gas & bloating until we switched my remicade to 4 weeks. Now that I am in remission I don't have the gas & bloating issues so that was apparently from lingering inflammation at the time though my doc had been trying to say it was IBS.

Bottom line -- if you think something isn't right and you don't feel well, be your own advocate and push your doc to help you find the answers. Shouldn't be any big deal for him to at least order the CT. If he won't help, find another who will.

damo -- are you talking to me? I assure you my other issues are not related to my UC and my UC is in remission.

If you are testing small bowel for the first time, don’t bother with Ultrasound or anything other than the CT or MRI . The rest are a waste of money , often not very reliable too and even if they detect anything it will only lead to having to do a CT/MRI to see concrete findings. Might as well just go straight for the big test and not waste time/money/energy on the smaller tests. The CT will also look at other things like spleen, liver lungs etc so makes more sense. Consider other blood work too with your GI if you are very troubled by your symptoms . To me it sounds odd when you say labs are fine, scope is fine but then worry IBD is manifesting elsewhere because of what sound like can-be-anything-symptoms. What about other inflammatory markers like ESR, Calcprotectin etc? How are they showing up? I think a lot always depends on how debilitating your symptoms feel to you and how long for you have been having them. If it will help you sleep better at night, get the imaging tests. Don’t bother with trying to compile evidence of others got diagnosed or not. Too many variables in every case.