Does anyone have raised fecal calprotectin?

[Samutro]

Hi guys, hope everyone is okay.

It has been presumed I have IBS 9 years but recently worsened and have new symptoms. My fecal calprotectin is 177 but that isn't super high. A scope looked normal, just waiting for biopsies & scan. Anyone else have IBS with a raised calprotectin? Thanks a lot.

[jojo12345]

I had a level of 250. Had a failed colonoscopy (twisty colon) then a clear colonography, and it was left at that. I do sometimes wonder if I should have pushed more for an explanation, although I was fairly well for a year afterwards so I guess nothing too nasty. Symptoms were helped by Amitriptyline and alverine citrate. I recently tried to come off the Amitriptyline but the pain has increased so I’m titrating back up again.

Not sure that helps, but just to say you can have a highish level and be ok

[Samutro in reply to jojo12345]

Thanks, that is reassuring. Hope you don't mind me asking what symptoms you had? I will write that med down not heard of alverine citrate

[jojo12345 in reply to Samutro]

No, not at all. Everyone else is scared to ask me in case I tell them at great length. Main symptom is pain, not acute (though it can get very sore), but very frequent and long lasting. No relation to diet, but I do bloat and get very nauseous if I stray far from the low FODMAP diet. I’ve seen many consultants and dietitians, and really drawn a blank for diagnosis, just lots of hints about possible medications. Alverine citrate is also known as audmonal. I believe it’s stronger than Buscopan. I’m not aware of any cramping, but it has helped so perhaps I don’t recognise it as such. My GP hadn’t heard of it either and I think it’s quite expensive (compared to Buscopan), so there was some reluctance!

Good luck

[Barnclown in reply to jojo12345]

Jojo, you’ve been through a lot!

I have a question:

Am guessing you’re managing IBSD without significant chronic constipation?

Am asking because Colorectal/gastro & co insist i must’nt take alverine or buscopan for my 24/7 abdo pain (your 🌟 description of the pain fits mine quite closely) because one of their side effects is a degree of constipation and my chronic slow transit dysmotility Intestinal Pseudo Obstruction is “somewhat” IBSC-like

I’ve been managing my lifelong mouth to a**s slow transit dysmotility abdo/visceral symptoms via a Low FODMAP high fibre exclusion diet Very Successfully & happily for 30+ years.....but, sadly, 2 1/2 years ago my v early onset underlying comorbidities had finally complicated things so much that we have had to rethink all aspects of my gastro treatment plan....and now gastro nutrition & dietetics have me on a strict no fibre diet which i stick to cause it does help (alongside a lot of heavy duty prescription meds).

Feels really odd to be eating the sort of stodge i’ve had to avoid all my life, but Needs Must. Am 64, have been living for yonks with several severe incurable immune dysfunction + connective tissue disorder illnesses, and i figure i’ve enjoyed eating for decades, so mustn’t feel too low about this diet change...especially while it’s helping me so much...

By the way, i’m on 20mg amitriptyline nightly for neuropathic gynaecology pain...and i think amitrip actually is helping somewhat to reduce the severity of my 24/7 abdo/visceral pain

Anyway, will be very grateful to know whether you have IBSD or IBSC, or even a mix of both...and if constipation is part of your mix, how is this affected by the alverine (what dose are you on?)?

Thanks!

[jojo12345]

Wow, thank you Barnclown, how lovely to engage with someone. Even the private consultants I’ve seen don’t really do that...symptoms too vague apart from the pain which has no obvious pathological reason. I suppose I tend more C than D, but I know people with ‘proper’ IBS, and I’m not as bad as any of them.

I’m toying with going back into the ‘system’ as the pain has worsened recently - but I’ll build the Amitriptyline back up first. I was doing so well I thought I’d come off it. I’ll query the alverine then. I don’t think it’s particularly working now anyway, but when I started a few years ago I was surprised to find it did.

I find the whole business of seeking help immensely depressing, as the last NHS consultant I saw 2 years ago told me to live with it and ask for a referral to the pain clinic, which my GP then refused to do. I was seeing a private consultant but of course that’s not cheap and he didn’t come up with much either. I’m not convinced food has any effect on my pain, but I suppose it’s worth another try.

Sorry you’re suffering in other ways too. Apart from the middle section of my body always hurting, I’m otherwise pretty healthy, for which I am grateful.

All best

[Barnclown in reply to jojo12345]

Thanks jojo: you’ve been v helpful!