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Gastrointestinal issues and AS

SJ1211

Is there anyone here comfortable sharing experiences with testing for GI issues/ has been diagnosed with IBD or Crohns following an AS diagnosis?

What tests did you have to have done and is there anything that has helped you deal with this side of things ?

I’ve spent the last two days in hospital being stuck with needles and waiting for tests to rule out issues with kidneys, gall bladder and appendix and they’re referring me to gastroenterology team for mri and further tests. I feel really depressed and alone right now and I’m struggling to want to wake up because of how ill I feel I can handle the joint pain etc but the new issue with my stomach etc is just leaving me wiped out.

I don’t really understand much at appointments as I’m autistic and have sensory processing disorder so the doctors mostly speak to my mum and not me. I just really feel hopeless at the moment as things keep declining and it is very hard to keep holding on for my condition to get more stable like this.

Rebecca C Moderator & Contributor
Hi - haven't heard from you in a while. Wondering how testing went on the GI tract. Hoping it has gone well and you are managing your symptoms. How has your mood been lately? Struggling with chronic illness is difficult. Pile on comorbidities, it can feel downright impossible. Thinking of you and hoping all is well. Rebecca (community moderator)
James Hollens Moderator & Contributor
Hi ,

So sorry to hear about your situation, I can imagine it must be a very stressful ordeal indeed.
colin.ball Member
I was diagnosed with AS and chrohns as well.
Unfortunately the test for chrohns involves a colonoscopy and before that they give you a powder to mix with water to purge your system, you drink it over several hours and stay very close to the toilet once it kicks in!
I am in the UK and this is the best information i can give you.
https://www.nhs.uk/conditions/colonoscopy/

it's not painful, though there can be some discomfort, i got to watch it on the screen the doctor used, its very strange seeing yourself like that. They will take some samples to biopsy, also not painful.

i was given a medication called PENTASA as an anti-inflammatory for my bowels and this worked wonders, as previously i could have diarrhoea lasting for weeks at a time beforehand.

hope you are well and don't be frightened by the idea of these tests.
good luck.

Colin.
Ali Long Moderator & Contributor
Hi I’m really sorry that you are going through all this. Hospitals are awful. It’s hard when new symptoms come up. I understand why you feel alone and depressed.

Personally, I don’t have any GI issues, but I know from Instagram that some people do have AS and GI issues.

Have you tried searching on Instagram by typing in hashtags like AS and GI issues?

I have attached a link that I hope you find helpful.
https://axialspondyloarthritis.net/inflammatory-bowel-disease

I hope this eases for you soon and you get some answers!

All the best,
Ali (Community Member)