UC or Indeterminate Colitis? -- Help: hot Terminal Ileum pain, goes into groin. Getting scared!

emmalouwho

Regular Member

Joined : Feb 2016

Posts : 140

Posted 5/7/2016 3:41 PM (GMT 0)

I was diagnosed with UC in 2012 (colonoscopy and rectal biopsy was positive for UC).

The UC was under-treated due to a lost biopsy and has now turned into a fulminant Pancolitis as of my Feb 2016 Colonoscopy. (e.g. Mayo Score - 12/12.)

When they did the latest scope, the GI said he could not get into my Terminal Ileium due to the inflammation.

When I told my husband (an MD), the said "does that mean you have Crohns?"

I am on 4 g Pentasa (started Feb) and Imuran (started in April), but the terminal ileum pain is not stopping.

The terminal ileum pain (Feels like a hot appendix!) is *now* going into my groin.

I've been at the ER several times for this. They do bloodwork, give me morphine and send me home.

What should I do next? I'm really scared that my Terminal Ileum could blow.

NB Under the care of a general GI doctor. He is not an IBD specialist.

Emma
Toronto, Canada

ambling

Veteran Member

Joined : Feb 2011

Posts : 1075

Posted 5/7/2016 4:00 PM (GMT 0)

Hey Emma,

As awful as it is, the terminal ileum will not 'blow'. Since you have severe pancolitis, it seems that you are experiencing what they call 'backwash ileitis'. It is unlikely to be Crohns.

Sorry about the pain... has anyone recommended Biologics for you? I wouldn't think pentasa and the recent addition of Imuran would be sufficient (particularly as the Imuran could take months to reach a therapeutic level). The inflammation needs to be reduced for the pain to ease.

Hope you get a GI on board soon. Painkillers can be useful at this point, as well as smooth muscle relaxers like buscopan.

Good luck with it all.

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