Glad to have found this forum

Hi everyone - glad to have found this forum.

I'm 44 years old and have had Crohns for 9 years now - first diagnosed after a peri-anal abccess recurred in 2002. Everything has been fairly stable and compared to others I felt lucky not to have too many problems, and I have been managing perfectly well on just Azathioprine for years now. However in March this year my scar tissue re-opened, and along with major acid indigestion and now a constant burning in my stomach I have been told that my fistula is extensive and I am likely to need surgery, possibly an ileostomy. Tests have been going on for months - endoscopy, colonoscopy and MRIs - and I am now awaiting an ultrasound next week to see if the pain in my stomach is gallstones. Oh - and the MRI showed up an Ovarian cyst so that's another added complication to deal with!

In the meantime the burning, gnawing pain continues and the scar tissue continues to ooze and bleed. I am tired and stressed, am sore and have no energy, so while I feel I should be trying to put a brave face on it and carry on with a normal life as best I can, my body won't let me and I'm starting to get on my own nerves never mind other people's! I'm lucky that I am self employed and work from home, but that saying, my work is also starting to suffer as I have no enthusiasm for it!

I know that everything will be sorted eventually - or at least I hope it will - but the not knowing when, along with the large gaps in between appointments, is really starting to get me down. I'm wondering whether a visit to A&E will speed things up but feel guilty about potentially wasting their time.

I know that there are others on here far worse off than me but I'm really glad that I have found somewhere to let off a bit of steam to people who understand - so thanks for listening!!!

Hi Lesley and welcome! I am sorry you have been feeling so poorly lately. It's tough to function when you aren't feeling well. Everyone around here knows how that is.

Where is your disease active? I assume it is pretty bad if there is talk of an ileostomy. Have you tried a biologic like Remicade or Humira? Surgery is usually the last option after all treatments have failed. And Remicade is known to do wonders on fistulas. Perhaps you should discuss these treatment options with your GI.

I had one treatment of Remicade when my second fistula refused to heal after 9 months - they are talking about another dose as well as surgery now. Am seeing the surgeon at the end of November so will hopefully have more answers by then - but thanks for the message - really appreciate the support!

Well, if you try Remicade again, and it works, stick with it! There are many forum members who have years of remission thanks to their regular infusions. And perhaps surgery could be put on hold. Crossing my fingers for you, Lesley.

Hi Lesley and welcome to this forum which is a great resource..
It is difficult to be upbeat all the time with this disease...your quite right.
I am probably one of the lucky ones as well compared to others out there, but it is a disease that looks like it will be around for the rest of our life...so we have to be honest and that means feeling low as well as high.

I am only glad I found this forum to help me with my low points....Hopefully things will start to be more positive for you presently Lesley..
Take care..

Thanks Del - am taking each day as it comes - that way there's no pressure!