Well I have been thinking of what I want to happen. I have got my appointment date for the sigmoidoscopy, 5th September. I think that if they see more damage I want to go for a pouch. I am not too enamoured with having the whole lot out and be stuck with a bag for the rest of my life, I am only 40 and I want to be here for at least another 50 years so more time with bag than without is not for me. If you are reading this and you have had an ostomy since you were a hell of a lot younger than me I am sorry if I come across as a whining git, I think I have had these symptoms for many years, always ill as a kid so I do actually consider myself lucky that I have gone 40 years without needing this op.
So my steroids are coming down, I think the gastro wants to see how things are after a while of being back off them to see how things look. He was annoyed that I was back on them when I saw him I think but there you go, life is like that sometimes eh?
On a different note, still away on a hol at our friends house just outside Nottingham, saw a very good friend who lives on a canal boat somewhere near Kettering, met him at Rutland water for a coffee. Back home on Monday, see how bad things get after that I suppose.
Bye for now.
My diary of how life changes with a permanent ileostomy. I suffer from ulcerative colitis, a disease that affects the large intestine and I require an ileostomy to remove the diseased bowel.
Books I have read recently
- The Fox and the Flag - Dan Parkinson
- The Fox and the Fortune - Dan Parkinson
- Wrath of a Mad God - Raymond Feist
2 comments:
I'm 23 years old and have had an ileostomy for 2 1/2 years now, and to be perfectly frank I wouldn't have it any other way. I've heard too may horror stories about the complications with pouches that I just don't want to be bothered. Of course most people probably don't have problems, so I wish you the best of luck if that's the course you want to take. Ultimately I don't want to have to have this thing attached to the side of my stomach, but then again I'm not afraid to show it off in public either.
Cheers!
Sean
Showing it off in public eh?!? I wish I had your self confidence. My career has given me a lot of self confidence in my abilities as a support engineer, it is said you won't find a modest support engineer, true, you can't do the job unless you know you are damn good. However this last year has hit me hard, I can't seem to think of the most obvious answers to technical stuff, I am trying to do an open uni course in computers and I have really struggled over the last 6 months.
Also I have gone from a 'the glass is half full' person to a 'the glass is half empty' person. That is hard to accept too. All because of the illness and now the ileostomy. The thought that it may be permanent is hard to come to terms with as I don't want to stay like this mentally. I need to get my head round the thought that if they remove my colon and then find out that I have crohns and not colitis they can't give me the pouch as the problems could return in the pouch. Then I have no colon and a bag permanently.
Sorry for the negative sound but today is a bad day, the mucus has increased again and it has gone back to coloured again. Also I am supposed to be a tutorial for the OU course but as I feel crap I couldn't get there. I managed to get to 2 before the operation, OK so it was very hard with keep getting up to go to the loo very quickly, but I did make it. So today is a backward step in my muddled mind.
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