Hi Laura,
I feel your pain, I really do. I too lost my job and had no quantity of life. I’d Just given birth to my 2nd little boy, when days later I ended up in A&E. I’d been diagnosed with UC 2 years previous , but had never had a flare up (other than when I first became ill). I assum my pregnancy must have kicked it off.
I didn’t cope with the bag well at all, in fact I hated every minute of it, I’m ashamed to say, even though it saved my life. I got postnatal depression really bad and couldn’t wait for my reversal.
Even though I suffered with chronic Pouchitis for 5 years, I know that had I been under the care of the consultant I am now, this would not have been the case. On my first meeting with him, I said “ I can’t go on living like this anymore and I think a permanent bag will give me a better quality of life”. He was shocked and told me, I was to young to be even considering a permanent bag (I was 36 then) and there was so much that could be done for me, to get the Pouchitis under control. We tried loads of different antibiotics, but they didn’t really work and I always still had Pouchitis symptoms (like you). It was only the Invanz ( Ertapenem) that worked for me and I will take it for the rest of my life if I have to. If only I had been under the consultant I am now, I would never have lost my job and my mental health would not have suffered the way it has. Would you not suggest the antibiotics I’m on to your consultant?
I really do hope you get the help you deserve and get the Pouchitis under control, as it really is no quality of life and people don’t understand. I used to say, I felt more fit and healthy when I had UC, compared the the J Pouch, but obviously that’s changed now (apart from the fatigue)
If you have any questions or want to talk about anything just let me know and don’t give up, you will get there, I’ve been in your shoes.
Helen x