High inflammation, bad symptoms but no diagnosis!

[Purpleberries]

Hi all, I’m new here and hoping someone might be able to help.

Over the last year or two I have developed issues with my bowel - lower right abdo pain and a lot of mucus in stools and fatigue is very bad. These flare ups are also accompanied by cystic acne on jawline and nasty skin abscesses on my buttocks (sorry about tmi!!!). Stool tests showed raised calprotectin (350) and I was sent to gastroenterology where I had colonoscopy that showed microscopic colitis near the terminal ileum. I was given anti-inflammatories (asacol) for this and ticked along for a few months before being hit by the worst flare up yet. My calprotectin levels were almost 2000 and they should be under 50!!! Was sent for urgent colonoscopy and NOTHING was seen! And I had a very dismissive locum gastroenterologist do the procedure because my regular doctor who is very helpful was on annual leave. This locum didn’t even take biopsies and told me I had IBS. Well you don’t get a calprotectin level that high with IBS... but please correct me if I’m wrong?

I’m getting quite depressed about all of this and I was so upset that the locum didn’t take me seriously in this procedure. I actually ended up in tears in recovery as I felt like the whole process was a waste of time after all that horrid bowel prep and then a painful colonoscopy... Why on Earth would you not take biopsies if I was showing microscopic colitis in the past?! I wanted to say something in the procedure but I was sedated and sucking on gas and air and just couldn’t manage to speak up!

I’m so frustrated and now I can’t see my gastroenterologist until November even though I feel like complete SHIT. Pun intended!!!! I just wondered if anyone else has experienced similar to this and if they had any luck in getting answers and got their symptoms under better control? Thank you and sorry for the long rant!

[FRreedman]

Had you stopped taking the Asacol, before your colonoscopy? I agree that a calprotectin level, in excess of 500, would indicate IBD (Crohn's or Colitis). I would write to my gastroenterologist, and lodge a formal complaint against the locum, and consider lodging the same with the hospital. Having a cavalier attitude is not conducive to being a medical specialist.

[Purpleberries in reply to FRreedman]

I was booked into an urgent colonoscopy at short notice so I stopped taking it 3 days before as I thought I don’t want it to mask anything in the procedure.

[Hidden]

Hello Purpleberries

I am sorry to hear of your troubles.

Unfortunately the NHS in general, and some clinicians specifically, have a very poor/uninformed attitude towards Gut issues. I agree with FRreedman and complain. As a tax payer you provide these individuals salaries and deserve to get a 'fit for purpose' service!

I have SIBO and diet is very influential in its control and eradication. As for IBD/IBS - food can be an inflamer so look at irritable bowel specific diets. There is mounting evidence that animal products like meat, eggs and particularly dairy (Lactose) are inflammatory.

See what Dr Alan Desmond, a highly respected GI, says about dairy. The supporting scientific studies for his arguments are listed at the bottom of the page. devongutclinic.com/dairyfree

Good luck