Thanks for all your replies, I'll try and answer as best I can although I'm quite tired so might miss some things.
FitzyK23 - Hi thanks for your reply, I've spoken to the stoma nurses at the hospital and they've talked me through it and shown me the bags, dvds, etc and she was more or less telling me I had to face up to surgery because she seemed to think it was innevitable it was going to happen. How does she know? She doesn't know me from adam. She told me I was spending most of my life in hospital, not true, I spent 4 days in hospital in July and 16 days just now, and that's the first hospitalisations I've had in 4 years. I was well for 3 years from the remicade and had a good quality of life. It's only really the last 6 months my crohns has been gradually getting worse, and it's no worse to me than any other flare up I've had when I've managed to get it under control. So I just feel like I should be given the chance to get it under control again before they just tell me it's beyond help and needs whipping out. They've asked me if I want to talk to people who have a bag and I have agreed to that, so hopefully I will see someone soon.
pb4 - Hi, thanks for replying, I bought some chamomile tea and had a cup lastnight, no adverse affects from that yet. I've bought fennel tea and peppermint tea but the peppermint tea I'm just not sure whether I should be taking because doesn't it stimulate your bowel? and I'm supposed to be resting my bowel on this elemental diet, and I think it gave me cramps, but I can't be sure it was that. I've tried Aloe vera juice ages ago and that had me doubled up in pain so I didn't use that again. I've tried accidophilis tablets and yakult and actimel. Obviously at the moment I can't take them, I'm trying to stick to this diet but it's really hard as I said. I have alot of mucus at the moment and I think taking any yogurt type drinks would make that worse? If I end up having to have surgery I think I will accept it eventually, but I think it might take a while for me to mentally come round to it.
gachrons - Hi again, from what I know (they don't tend to tell me much, I have to find out for myself by looking at my discharge notes and things). On my last colonoscopy report (in july) it said that I had severe crohns colitis to 35cms, above this normal. So I am assuming it's still the same area that's affected. So if that's the case I might only lose half the large bowel and have a colostomy, but I think it was the stoma nurse that said if the area after the first bit was affected in any way they would probably remove the whole thing. When I saw the surgeon he did try and explain the J pouch thing to me, but to be honest I was so tired I couldn't take in much of what he was telling me. From what I can remember though, he seemed to think it was a waste of time and not much point doing. I'm tollerating the elemental drinks, I quite like them, but I am finding it really hard not to nibble on something in the evening which defeats the object of it really, but I'm finding it virtually impossible on these darn streroids. I suppose I'm still resting my bowel because I'm hardly eating anything at all, but I do need to put weight on. At least I am getting some nutrition from the drinks though. Just wish I could stick to it better. I think I need more drinks, I don't think they've got me on enough calories.
loobylou, hello fellow uk'er
thanks for your reply. My doctor is pretty much useless, I should really get a new one, but the surgery is litterally a couple of minutes from my house and makes picking up prescript
ions etc so much easier if I'm ill, so I don't really want to change, and also every doctor I've ever had up and down the country has been pretty much useless, so I don't hold out much hope of finding a better one that easy. If they do try and force me into the surgery again, I might put it to him and see what he says though, he might surprise me and do something about
The reason he gave me a sigmoidcope and not a colonoscopy is because I told him that the last colonoscopy I had made me ill. But I don't think it was the colonoscopy itself it was the picolax, it always makes me ill. I told him this, but instead he just gave me an enema (excruciating!!!) and a sigmoidscope instead.
I have to see my consultant again in a month, and hopefully by that time the remicade might be having some effect and the steroids and diet might have done some good, then he might stop going on that I'm going to die if I don't have surgery. I so want to prove him wrong that it wasn't the decision to take so drastically without trying anything else first. I just hope I'm right and he's wrong.
Incidently, has anyone gone back on Remicade after having good results the first time, and continued to have good results a second time? I'm obviously worried about
the risk of a reaction going on it again, but that's the chance I'm willing to take because it worked so well for me the first time before they took me off it.
Thanks again for all your replies.