Undiagnosed...possible Crohns? Need advice

[Dreamimginpink]

Hi, I'm looking for a bit of advice re my situation. I'm currently undiagnosed after suffering for a long period of time. My symptoms have got worse and worse over the last year and a half and I'm desperate to find answers. I am wondering whether anyone can relate to my symptoms or give me any advice re possible tests to ask for etc? The investigations and results I've had so far are:

Gastroscopy x2 nothing found
Colonoscopy x2 large area of polyps found now removed
Small bowel mri nothing found but I believe the images weren't of good quality
Faecal calprotectin raised at 190
Iga count raised
CT scan nothing found except large liver cyst.

My symptoms:

Severe bloating, discomfort and nausea after eating anything (and even when I don't eat) and after a bowel movement, excessive wind

Pain under right ribs and in the centre and feeling of food getting stuck every time I eat

Bowel movements vary from 3x a day to once every 2 days, mucus in stool, occasional blood

Anal fissures, painful urination

Shortness of breath and sometimes wheezing

Joint pain especially in the morning and muscle pain

Muscle twitching and weakness and sometimes severe nerve pain

Severe fatigue and low mood, sometimes insominia

I was also diagnosed with ankylosing spondylitis a few years ago which has now settled but I believe this is related to IBD.

I am at my wits end after being constantly fobbed off by doctors and I'm sure my gastro will want to discharge me at my next appointment. I can't face living with these symptoms for the rest of my life, this illness is completely ruining my life, I feel so ill all of the time.

I'm wondering whether I could have crohns in my small intestine and therefore whether I should push for a capsule endoscopy? My gastro practically laughed at me when I suggested it at my last appointment but I don't know what else to try? Does anyone have any advice or can anyone relate to my symptoms?

Thanks in advance!

 

[Sophabulous]

I would definitely push for a capsule endoscopy, or at least a repeat MRI. You can't live like this as you said. Sometimes (and I learnt the hard way), you do have to be a bit of a nuisance and refuse to accept their brush offs, you know yourself when something isn't right. Otherwise could you go through the ER/A & E if the symptoms really flare up?

Sorry for what you're going through, I hope you get some relief soon

 

[ronroush7]

Welcome. I agree with what was said above. I also might see a rheumatologist about the joint pain. I am going to tag Maya 142.