Surgery? I think so!

[Marx]

Hi guys, I've been suffering from a flare up since October 12. I've exhausted steroids and infliximab. I think I'm mentally ready for surgery. Having met my surgeon, he advised I would need about 40 or so cm taken out (which shocked me). He also said they might need to put a temporary stoma in. When he told me that, I suddenly didn't want surgery anymore. Because I was on the mend (somewhat), he said not to have it right away and see how things go. But now my situation isn't getting any better and my life has come to a stand still and I think I'll push for it. Just wanna know people's thoughts and suggestions regarding the whole surgery process and in particular getting a stoma. I'm really worried!

Thanks guys!!!

 

[Marx]

Lil background info...

Was diagnosed in 2011 officially but suffered since 07. No history of surgery. Problem is in my ileum and I've been on budesonide, aza, pred, infliximab.

 

[Trish22]

I am awaiting surgery (onthe waiting list)has they say here in UK.Although I have had previous surgery,am in the same boat,I have a stricture in my Ileium and like you have been told to expect a possible Stoma if things are messy in there,which I guess it will be,I have had quite a few surgeries,so expect to have lots of adhesions,but am worried about the situation,but am getting to the stage where eating is becoming a total nightmare now and joints in my knees and ankles are recalling giving me some uncomfy twinges.
So yes as much asi don't really want this surgery,it's a case of no choice really.when are you having yours ,do you know?

 

[Marx]

I haven't got a date yet. I'm meant to be seeing my surgeon in June, but I don't think I can wait that long. When I see my GI doc next week, I'm gonna tell him how nothing is working and I defo want the surgery and need it ASAP! Have you never needed a stoma in your previous surgeries? I hope you don't need one this time around. A guy told me, they have to tell you about the stoma just to cover their backs, but they hardly ever put one in. How long is the waiting list? Where in the UK are you? And have you tried infliximab?

 

[Trish22]

Yes I was on infliximab for two years and taken off it last year,due to no real improvement and tbh I think it was making my scar tissue worse.
yes my surgeon did mention a stoma,but as you mentioned they say this to cover there own backs most times,I think this time it's another resection (terminal Ileium) if everything goes to plan.
I live in the West Midlands (birmingham) and waiting lists are running at about 3 months according to the surgeon and I.b.d nurse.
I am hoping this time that after surgery they start me back on azathioprine as my maintenance drug,so it hopefully stops the scar tissue forming and any imflammation away.

 

[Marx]

Oh ok, thanks for the info!

How long were you in remission for after your previous surgeries?

Hope it all goes well for you and yeah it seems going on aza post op is the sensible thing to do!

I live in London btw and I'm hoping the waiting lists aren't as long

 

[Trish22]

I was in remission around eight years after each op but have managed to go about 11 years between each op my last crohns one being 2002'
I suppose I have been fairly lucky in that respect,and that if I didn't have these two strictures,I would feel absolutely fine,My CRP bloods are always around 1 or -1 and my iron levels around 12.5.
Hope you get sorted out really quickly as well,let me know how it all goes.

Trish x

 

[Marx]

Thanks! Great info!