Crohn's Disease - a discussion

[nomorepanic]

I have Crohn's as well and have been off work over 6 months with a flare up and several abcesses that are still draining and I am still not over the worst yet I don't think!

[the_nub]

Gotta love those abscesses. Definitely my favourite of the various Crohns complications!

[nomorepanic]

Have you had an op Nub?

[the_nub]

Yeppers. Had a huuuuge abscess right on my bum - it's how they diagnosed me - and when antibiotics didn't work, they finally operated on it. Twice, cos they didn't get it all the first time. This was AFTER it fistulised out to the surface and leaked THE WHOLE TIME. Doctors, eh??

Had to have the district nurse come every day and pack it from the inside out with sorbsan, so it didn't heal over the top. Then had to have a third op to restructure my bum area, cos the abscess had cheerfully entwined itself round my *whisper*sphincter and removing it had damaged the muscles.

All good now, though...with impressive bottom scar tissue!!

[the_nub]

Or, should I say, rather than "how they diagnosed me", it's how they started thinking Crohn's was what I had, after I hadn't been eating for three weeks. Having a colonoscopy with The Badboy (as it came to be known) sitting on my bum was NOT pleasant....!!

[nomorepanic]

Ouch sounds painful!!! Sorry to hear you had to go through all that.

I have abcesses on my bowel and fissures so the bowel is leaking and I have a hole in the abdomen draining them and a bag on it to collect the pus. Had this 6 months now.

The joys of Crohn's eh???

Do you find the meds you are on work well?

I am sorry for taking over this thread - perhaps we should start our own Crohn's thread lol

[the_nub]

Not on meds any more! Fully in remission (touch wood....not good at the moment for the first time since in remission).

Was on prednisone - didn't work
Added to prednisone was pentasa (OMG, size of horse tranqs!) - didn't work
Put on azothiaprine - didn't work
Moved to 6-MP - didn't work
Doctor starts muttering about colostomy bag...I throw MASSIVE sh!tfit as I was 22 and DID NOT WANT a bag...so I got angry, went online, and made a big document about all the other treatments I could jolly well have before they made me have a poo bag....
...doctor agreed to give me Infliximab. Had 8 infusions on the NHS - found out later how much this costs, OMG - and since then, been fine!

Can eat properly and everything!!

So if it wasn't for that, I'd still be ILL TO THE MAX.

Worth mentioning Infliximab to your doctor...??

[the_nub]

If you have abscesses leaking out of yourself, they really should think about Infliximab.

[nomorepanic]

I was diagnosed with this after a few years of suffering with constant diarrhea and was told that was anxiety.

I created this post to talk to other sufferers.

[the_nub]

Hello!

DEFINITELY bring up Infliximab with your doctor