Struggling and half diagnosed

Hi everyone, I'm newly registered to the site and just needed some people to hear my story that might be able to understand.

Two and a half years ago I had what was suspected to be a gallstone attack followed by weeks of antibiotics for cholecystitis. This occurred again and again for a year with negative ultrasounds for gallstones until I had a HIDA scan that showed pitting in my gallbladder so my consultant said to remove it. This was removed 18 months ago and after surgery I became septic.

The pain just didn't go [emoji20] In October last year I was referred back to my surgeon who said it must be bowel related and sent me for a colonoscopy, this came back normal so he decided it must be ibs even though my only symptom of ibs was pain (and not related to opening my bowels).

Just over three weeks ago I started to have diarrhoea for the first time. Nothing stops it and anything I ate or drank made it happen. After 2.5 weeks I was admitted to hospital, my faecal calprotectin was over 700 and on ct it shows central thickening of my small bowel. They have said it's likely to be Crohn's but I can't be properly diagnosed until I have an mri and colonoscopy.

I have been started on steroids and am home now awaiting outpatient follow-up. The pain is so bad I can't sleep. I am terrified that they'll find nothing on the follow-up tests and I'll be stuck like this forever [emoji22]

I'm not wishing to have ibd but I can't cope with having no diagnosis and no idea of how to get better.

I am eating low residue in case it is Crohn's.

Does this sound right to you as it being probable that I'll be diagnosed?

If it is Crohn's roughly how long will the steroids take to make a difference?

Thanks in advance for any comment x

That depends as far as the diagnosis is concerned. There is a section on here for people who are undiagnosed. I hope you get answers soon and they can get you feeling better.

Thank you, it would be nice to know what is causing all this pain and that I'm not mad, imagining it or over-exaggerating as many people and doctors seem to have thought.

I've had a read in undiagnosed and on here and my story does seem similar to the experiences of other people, wouldn't it be good if there was a quicker and easier road to diagnosis to try and minimise the damage and suffering

Amen

Hello,

with a fecal calproctectin level of 700, I would be surprised if they find nothing on colonoscopy. I'm sorry to hear you are in pain, but you will get a diagnosis and with proper medication things will get better.

What kind of pain is it? Do you have a fever?

Thank you. Think that I just need someone to say it and believe it, I just feel so dreadful.

No fever, the pain right now is like a rock is sitting under my right rib sort of dull and sharp at the same time. The pain last night was the worst pain which was sharp and agonising, nothing could distract me from it and I couldn't make myself move to get my hot water bottle.

I don't want to eat because yesterday the pain felt worse a little while after eating and at least when I sit very very still with the other pain it isn't so bad. I will eat because I know I have to.

It's a 6 not a 7 when I go to the loo now though so hopefully I'm not losing as much fluid.

Thank you so much for the kindness xx