Confusion over possible Crohn's diagnosis

[Monarch27]

Hello,

I hope I have posted in the correct section. I live in the UK and have been suffering with really unpleasant abdominal symptoms for around 6 years; these include: pain and nausea, bad indigestion, alternating loose stools and constipation (not generally diarrhoea and no blood), exhaustion and frequent migraines.

I was diagnosed with Coeliac Disease in 2016 which is now completely under control. However, my symptoms continued and have worsened. In summer 2021 I had two quite high faecal calprotectin results (291 and 322). I also had an endoscopy which showed some duodenitis. I then had a capsule endoscopy/PillCam test in November which showed a couple of small ulcers in the terminal ileum.

I am under the care of two gastroenterology consultants at my local hospital, but they have given differing reports - one said the PillCam findings "raise the possibility of Chron's Disease". However the other was more dismissive, saying in a letter that because the ulcers are only small, they would not be causing such severe discomfort and pain and therefore even if they indicated the beginning of Crohn's disease, it would have no correlation with my current symptoms. So at the moment I am not sure whether it is likely that I have Crohn's/IBD or not, which is very frustrating, especially as my symptoms get worse by the month and my doctors won't take any action.

I guess my main question is: is there any truth to the claim that because the ulcers are small it is not likely to be Crohn's causing my issues?

It would be great if anyone has any insight or similar experiences. Thank you.

 

[Pangolin]

Elevated fecal calprotectin plus terminal ileum ulcers is very likely to be Crohn's. At least some of your symptoms are likely to be related to that. If you need an official diagnosis, push for a colonoscopy. An MRI might give more information about the extent of the problem as well.

 

[CronoMush]

Consultants may vary in their opinions, but if the PillCam findings "raise the possibility of Crohn's Disease", then it would not be unreasonable to follow-up this up with a colonscopy to confirm the findings. As part of the procedure they can also take biopsies of the affected regions. If the Pillcam showed that the affected areas are in the Terminal Illeum then they might be difficult to reach with a colonoscopy but some form of follow-up to determine the cause still seems a reasonable discussion to have with the consultant. At the end of the day, you are the one feeling the pain and you know how intense and uncomfortable it is for you.

Follow-up in the NHS can take months so I sympathise with your frustration.