Possible next step

[shazz]

Hi all,

I have been told that I will more than likely need surgery soon.
I was told this in May this year but, unlike me, putmy foot down and demanded they try some more meds first. They had only tried me on Pentasa(9 tabs a day) Pred(8 tabs a day going down to 4 tabs a day when I started flaring really bad again).
That was it and they wanted to do surgery.
After I said no the consultant then stopped all my meds to 'see' what would happen. Well everything went to hell really fast. Within a week I was bleeding and living on the toilet.
Have now tried the following:
Azathioprine
Mercaptopurine
Enemas(foam) and suppositries(sp?) no effect.
Infliximab/remicade - only had 1 dose so far but have finally stopped bleeding(since July)
Had an MRI scan in late August and this picked up the inflamation and scaring in my small bowel and terminal ilieum.
They have sugested a j-pouch as my only option but if I have crohns as well as UC wont that help it spread?
Am having a colonoscopy on 8th December and will know soon after that if I do have crohns as well.
Sorry for the long post and advice and sugestions would be appreciated. Please ask any questions if nothing is clear.
Sharon xxxx

 

[goldenholds]

Hey Shazz,

I was only recently diagnosed too, July 2011, not sure if its crohns or colitis yet. I do not know much about it all yet, but from what I have read about other peoples treatments it seems odd that surgery would be recommended at this stage. I think you are right to want to try other things first. Pentasa is not a strong drug, and pred is only for short term usually, so it makes no sense that they would go to surgery before trying any of the other numerous and often effective treatments. If it were me I would do the same as you and resist the surgery for now at least, and hopefully the colonoscopy will shed more light on things. No joke intended. :tongue: All the best.