Oh my god, I feel like I am going through the motions of having this op. Firstly was surreal, couldn’t believe that I could actually be cured of this awful disease, 2nd was happy sooo happy the thought of normality and everyday living wouldn’t be a a chore, but thirdly I am shit scared soooo scared of just after the op,the stoma bag the scars the emotional turmoil all over again with myself and Danny, because even though he hasn’t got UC, he is definitely going through it with me.
My first emotions were after having the op and everything is back to normal, and not a stoma bag in sight, but this is my reality, this is really going to happen! I looked at a blog last night on a website I found, this guy had been for his op and in his own words and pictures shown graphically of the scars and the stoma bag, I highly recommend looking at the website, I found it very informative and I am so glad that I did look at it when I did as I had know idea what the stoma would look like. The stoma bag, the scars it did and has freaked me out, not to the point I won't be having it, but now my thoughts are turning to been put on the bed and getting wheeled down to theatre, leaving everybody and can imagine it will be upsetting. Then waking up to i’m not sure how much pain and discomfort but then getting used to having a stoma bag.
I do feel that more should be talked about,more information to be given before the operation, because as far as I knew, I would have an operation and have a long recovery and then over, but it looks now, that there will be another operation after something called a j pouch, which I have never been told about, so whether what I was looking at last night is different to what I am having, or I just haven’t been given all the information about the operation!. The NHS are shocking that in 3 years this was never mentioned as an option a last resort maybe but all the same an option. I find it disgusting.
So from July through to now, I have had more accidents than I can remember, more so when I have been stressed or eating something that didn’t agree with me, but it has happened everywhere. The times it most happened was in the car either to work or coming home from work, it was awful there was nothing I could do they were awful times.The most embarrassing place has been at work, I have had to go home get changed then go back again, awful times are coming flooding back, and even though I am still not in remission, I haven’t had that happen for awhile. Work have been great, really understanding and helpful and supportive, and have even given me my own key for the disabled toilets, to hopefully help with the urgency situation and so far it has a lot!
When I am bad I can literally go to the toilet 20 times a day, so with that comes tiredness, weakness, short tempered, looking ill and pale, and now I am anaemic from loosing so much blood everyday, everything that everybody with this condition who has flare ups will understand. It’s really difficult sometimes, even with an understanding partner, when you are tired at 7pm and are going to bed and then up 6-7 times through the night maybe more, maybe less, you don’t also get to spend a lot time with them. I know this condition is not a cancer but it is bloody awful and I hope and pray that somebody can find a cure for this, because even though it isn’t a cancer, it is very restricting.
This link is to the one that I talked about in this post, well worth a look: http://www.jpouch.net/