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Likely next step

Splasher

Splasher

After my last hope humira isnt working my GI told me this week he feels medically it isnt being controlled and is reffering me to a surgeon, i am quite gutted, humira is the only med i have taken without having awful side effects but it has done nothing to help me. I have pancolitis and have always been quite scared to go down the surgery route. My GI is scheduling me for a colonoscopy next week (really fast for the NHS is normally 8 weeks min) and prescribing me asacol and enema's to try and help some. I do want to have my life back and if surgery is the only way then so be it, my questions are is the surgery a good thing? does it take you long to recover from? Are there any issues following it? And would you recommend keeping a bag or going the whole hog and having re-constructive surgery following the bag? Thanks to anyone for their info
 
nogutsnoglory

nogutsnoglory

Moderator
I think surgery should always be the last resort because there can be a host of complications. That being said sometimes its necessary and quality of life will improve dramatically.

Was Humira your last option truly? Have you tried remicade, immunosuppressants or maybe a novel or trial drug. I think anything you can try before surgery is beneficial if your inflamed. If you are mainly scarred, unfortunately surgery is the only fix for that.
 
Splasher

Splasher

I have tried asacol, azathioprine and allapurinol, infliximab, prednisilone, I had issues on all and bad side effects and allergic reactions, they told me humira was my last chance saloon yes
 
Dukeis

Dukeis

Dynastic Overlord
Do you have Crohn's or UC? That would make a difference to me in how long I would fight off surgery.
 
Splasher

Splasher

I have pancolitis, it isnt severe more moderate, just find it difficult to get a med i dont have bad reactions to and the one i didnt hasnt helped
 
Dukeis

Dukeis

Dynastic Overlord
Pancolitis can be caused by either Crohn's or UC and then there is indeterminate colitis where they don't know what disease it is for sure. I had pancolitis and it was Crohn's.
 
Splasher

Splasher

they label it as UC although they say they cannot be 100% sure, but say it looks more like UC than crohns and it did initially flare when i quit smoking. My brother has crohns. I have never been sure which it is, i dont bleed very often like most UC patients, nicotine repplacement dosent help me at all and i also have b12 issues which i see more with crohns than UC patients, so going for surgery for me is a little bit of a gamble and a hope that it is indeed UC and not crohns
 
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