Possible Crohns feel defeated with current Doctor
Hi,
I will apologise in advance for the really long post I’ve just never spoken or asked for advice in 6 years apart from the GI doctor I’ve been seeing.
Just a bit of background if anyone can relate or has any idea or input into what could be going on. This started at the age of 24, so 6 years ago now.
My main symptoms are severely protuded and distended abdomen at all times. Tender and painful to touch stomach feels like hard lumps under lower abdomen mainly clumped lower right, feel so much pressure in my stomach, eating anything just swells everything. Finding difficult to breathe, posture changed etc. Abormal bowels and can’t tolerate many foods.
I was into athletics, gymnastics and was very in shape lean and all of a sudden my stomach protuded and swollen to the point where I had purple stretch marks and severe pain. So I went to A&E as I felt couldn’t catch my breath my abdomen didn’t even move on inspiration or expiration. Surgical team did a CT scan which showed; Fibrofatty proliferation of the bowel wall, these radiological appearances can be related to inflammatory changes. You may wish to consider direct inspection of bowel to exclude IBD. Anyway I got admitted to the ward for urgent colonoscopy and was told on the ward I had crohns due to there being longstanding scarring/inflmattion of approx 50% of the bowel wall. Anyway fast forward, I had colonoscopy and this was normal. So when I had my outpatient gastro appointment doctor said it was either just in my head via the gut-brain axis (which I know is a thing) but when I queried why half my bowel wall is scarred she said “it’s just the way you are” and basically that was that.
So I asked if I could have further tests to try rule out so I had
- MRI which showed active inflammation in terminal ileum.
Endoscopy showed: pyloric oedema and there are fragments of antral type gastric mucosa that show foveolar hyperplasia, vascular ectasia and smooth muscle fibres within the lamina propria. Very scanty chronic inflammatory cells are noted.
- Barium swallow which showed; The stomach has a featureless appearance with a tapering defomity down into the body and antrum of the stomach. This can be related to infiltration of the stomach wall such as linitis plastica. On the three and four hour films there is complex narrowing and separation of the distal ieal loops which clears on the 5 hour film but there is some focal narrowing of the terminal ileum as it enters the ileocecal valve on the 5 hour film.
Gastroscopy is advised to evaluate the stomach further in view of the deformity shown.
The most likely cause for the appearances on the small bowel barium study would be Crohn's disease and a repeat small bowel
MRI is suggested.
- Possibly unrelated, but fatty liver and very high triglycerides etc which they found strange as I’m very fit, lean, don’t drink alcohol and was 24 - and referred to chemical pathology to start statins and couldn’t figure out why for 6 years every ultrasound liver is echobright and ALT is raised.
Given these further tests; I had another appointment and I asked the doctor and said 3 different scans with 3 different radiologists have commented crohns. Is there a possibility it could be that. Her response was “the radiologist is old and retiring soon I don’t believe her report”. So I said I’d like another opinion. She said if you don’t like my opinion then I can discharge you back to your GP. I asked about possible empirical trial for crohns for a few weeks to see if that could alleviate some of my symptoms or see if it improved inflammation in terminal ileum. Her response was “no because if you take it and it works, you’ll want to take it forever. Then she asked me about mental health I said I guess it does get me down as my stomach is so swollen I wear different clothes or colours now, I don’t feel as confident, don’t like taking my top off around the pool or small things like that so yeah it gets me down. So she wrote to my GP and said consider referring me to therapy because of my mental health. Just baffling to me, that’s not what I meant or said.
Any idea what this even sounds like or anyone had anything similar on the scans. My gut feeling says it isn’t crohns but I just know something isn’t right and I don’t feel well.
Thanks for listening 😊