Been on pred since April & started Azathioprine then too. Reduced pred to 5mg started to flare told to go back to 10mg for 4 weeks and felt great went in for colonoscopy. My doctor said by bowel was clear and to reduce to 5mg 2 weeks then 2.5mg two weeks. Started flaring at 2.5mg, phoned hospital and was told I must be steroid dependant and booked an appt with specialist nurse yesterday.
I told her I didn't think aza was working (through tears) told her I had had enough and that I didn't think surgery was too far off so could I not just have it just now. She told me my bowel too healthy for that colonoscopy showed inflammation in rectum only (no 1 lie by dr who had previously told me everything was fine). She went and spoke to dr who said he did think aza was working and to introduce enemas as it was the rectum that was inflammed. I know the inflammation has progressed since then (i have pan colitis, only found that out yesterday too as I seen it written on my blood form) although another nurse always writes chrons disease on the blood form!!!!
Basically I feel that I am banging my head off a brick wall. When I went for scope and my rectum was inflammed I was having one good BM per day. Now I am having about 5 very loose BM's with pain and urgency but they are treating me for how the colonscopy results were when I felt fine then so I must be worse now. Honestly I think that they think I am a nutter and it is all in my head.
So now I have to use the enemas (which have never brought me out of a flare in the past, I have used them for 3 months straight before) and probably by next week I will be an invalid. back to being a recluse staying by my bathroom, unable to look after my kids and diving deeper into the black hole that I have already entered.
And to top it all off the nurse called me to say I could not get the supply of enemas until the middle of next week as I had to wait until their letter had been sent to my family doctor and then they would write me the script. Shows how urgent they think my situation is!!!