Worried about results of recent scopes

[vickyhunter]

Hi everyone,
I had a duodenoscope (down the throat) and colonoscopy earlier today, and I got the results soon after.
They showed me some pretty horrific pictures of my bowel which really upset me (never knew it had got that bad) and the verdict was "severe Crohn's of the entire colon".
The words 'severe' and 'entire' really freaked me out, as I've had Crohn's for about 12 years now and it's only been in my ileum and a small part of my colon, so I think I'm just shocked at the fact it has spread and to such a severity .

I'm on 100mg of azathioprine which I have been on for 6 years (but which obviously isn't working now) so I'm just worried what will happen next.

Has anyone been in a similar position?

 

[Dexky]

Do you think they will suggest Remi or Humira next? They seem the logical next step. If so, I hope you get back to remission quickly!

 

[vickyhunter]

Thank you Decky, hope I get back in remission too! I think they may suggest remicade, it does seem the next logical step like you said.
Thanks for the adivce

 

[Ian]

Oh Vicky I'm so sorry, I was just wondering how you were doing (after you posted about the Aza not working and having scopes to investigate), and then I saw this.

I'm in a similar position - I was originally diagnosed with proctosigmoiditis, which is basically just UC of the rectum and some of the sigmoid (so basically just the end of the large bowel - very small area). With each flare it spread (and required more/stronger drugs) and now I have it throughout the whole large bowel. Mine stops dead at the ileo-ceacal valve though, no small bowel involvement so it's either Ulcertative Colitis or Crohns Colitis, we're still not sure it seems.

Anyway, the biologics were my next step and will probably be yours too (I take it Prednisolone isn't working now?). Hope they sort you out soon so you can get back to being a carefree student! Oh and talk to them about keeping you on the Aza in conjunction with the Remicade, as apparently it helps to maintain its effectiveness for longer .

 

[vickyhunter]

I have Crohn's colitis now, as mine still involves the terminal ilium. Must be so annoying for you to not know which it is! But yeah, it's horrible that it's spread so much. Not receiving proper treatment at uni probably didn't help though, I just got put on steroids and pushed to the back burner, only had these investigations now after 8 months of a flare up.

I'm not on steroids anymore, haven't been for about 2 months. It's strange I was feeling unwell but not massively so I came off them as it's not good to be on them for too long and tbh I just wanted to get through my uni exams (which I passed, thank god!).
I think it's a case of being unwell for a while and forgetting what it feels like to be well so you end up thinking how you feel now is normal, when actually you're quite ill.

I'm seeing my consultant in 2 weeks time but I don't know what he's going to suggest. and yes I remember you saying about aza and remicade working well together! so I'll suggest that if he doesn't.

Thanks for the advice
xxxx

 

[chrisnsteph1022]

I went through the same thing. I originally had mild/moderate Crohn's in the TI. 8 years later, it was severe crohn's throughout the entire colon and TI. My doc added Cimzia to my meds.

 

[vickyhunter]

Thanks so much for replying! I'll definitely mention Cimzia to my doctor! Has it worked well for you?
xxxx

 

[Ian]

I think the same thing happened to me at Uni, I ended up being a bit neglected due to being away from my hospital. And I know what you mean, you just forget what normal is and adjust to being ill! Hopefully what ever you take next will make you feel brand new again lol. Well done on passing your exams in spite of everything! Hope next year runs a little more smoothly.

Oh by the way, I don't think Cimzia is available in the UK for treating Crohns. Just Remicade and Humira at the moment (in terms of biologic treatments). But maybe ask about it anyway and report back, he might have some idea of when it might be available. I'm curious to know myself! Let us know how you get on at the appointment .

 

[vickyhunter]

ooh thanks for letting me know, I'll ask him about that. and yeah I'll be straight on here as soon as I know more ahah!
xxxx