Anyone with IBD/Crohns etc? I have so many questions!

[Anotherlittlething]

I started getting unwell a year or so ago initially had my appendix out as a ct scan shows inflammation. Then a few months later ill again this time worse with realy bad stomachs coudlnt really eat etc ended up in hospital for a week because I’d been so dehydrated.

while in hospital in January I had an endoscopy and sigmoidoscopy. The biopsies showed barrats esophagus (which I already knew) and some mild inflammation in my duodenum.

my calprotectin was 700 then 1200 then 660.

in June I got a gastro appt and he said he’d need a full colonoscopy which I got 2 weeks later. They colonoscopy just found some
small polyps which they removed and they said a small area of ulceration in the caecum (?)

they said is need to wait for another appointment to discuss but could t tell me ont he day what it might be if anything.

the thing is im sO miserable I constantly feel crampy, have to rush to the toilet (even if I don’t have diahrea I get the cramps) goign to the toilet doesn’t ease it. I feel full up after eating even small amounts and end up rushing to the toilet. I made rh mistake of eating 2 biscuits this morning and ended up having to abandon everything and rush off to the toilet and now just uncomfortable.

The appointment coudl be months away and I mean it doesn’t sound like they found much to explain the symptoms.

does anyone have anything similar because I am getting really sick of this and waiting 6 months to be told they didn’t find anythig useful seems just awful atm!

I have ulcerative colitis which is under the IBD umbrella. Mine was similar in a bad flare up, feeling full quickly, rushing to the loo after eating anything. But UC usually includes blood in poo, and you don’t mention that.

When you had the colonoscopy they would have taken biopsies-have you had the results of those yet?

Finding ulceration and inflammation in your digestive tract is absolutely enough to account for your symptoms especially given your calprotectin levels.

I would really push to get your follow up appointment asap. Phone your consultants secretary and explain that you’re really struggling, ask if you can be considered for a cancellation, ones bound to come up over the summer holidays.

I know it’s all incredibly frustrating and difficult. It took me 9 months to get my Crohn’s diagnosis and that was 30 years ago but I remember how awful it was like it was yesterday. Best of luck.

No I’ve not had bleeding apart from the skin around from going so much!

The report says they took 11 biopsies but I think they said a month for results.

I messaged my gp this morning and just said it’s not urgent or anything but is there anything I can do while I’m waiting as it’s just getting worse.

I feel like I’m being a baby about this now!

I was reading the report and thinking a small area of ulceration doesn’t sound too bad how can it cause all this!

If you are willing to try changing your diet take a look at Dr Nick Norwitz on YouTube, he is a medical doctor and researcher who suffered IBD himself.

To me it does sound like Crohns, my initial pathway was like yours, ill for a week, emergency appendectomy, back in hospital 2 months later, repeated periods of being well, then very ill, in hospital. Finally I had part of my illeum removed and have been ok since, apart from b12 malabsorption and a tendency to have the squits - controlled by taking a bile acid sequestrant, I understand this to be very common post-operative, the bit cut out has a job other than making you ill. For me it was 40 years ago, so the diagnostic process will have changed, i don't think colonoscopies were routine then, I certainly never had one but I did have several barium meals.

Any ulceration can cause symptoms. My last colonoscopy showed no ulceration at all and my symptoms were horrendous. Your biopsy results will give you a definitive answer.