thoughts

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.

seen the surgeon

Today I saw my surgeon to discuss the fixing of the hernia. However something i hadn't thought of sort of took over. As I am in a flare-up and back on steroids he has said that something needs to be done with my colon and we saw my gastro consultant and told me that I need a sigmoidoscopy, basically a camera up my backside, to see how bad things are and decide what the best surgical procedure is as things need to be sorted out sooner rather than later. So I am waiting for an appointment to get that done, it is going to be a rush job apparently so next couple of weeks then get any op done sooner rather than later. I have a lot to think about so I will leave it here and put something up tomorrow maybe.

good morning.... i don't think

Not a nice way to start the day. Woke up covered in crap as the bag had failed again. When people like me say they had a bag fail what they really mean is that the sodding thing came unstuck and the contents came out over themselves and their clothes. As I say, not a nice way to wake up.

On another note

Been meaning to post about the book I found in Kings Lynn. Called the Great Pyramid Robbery it had a sticky note stuck to the front talking about Book Crossing. It is a book that you read then leave it somewhere else for anyone who cares to do so also picks it up and reads it then leaves it somewhere .... you get the idea. There is a unique code in the book that you can enter in the Book Crossing website and you can see where the book has been before you found it and then you can keep an eye on it once you leave it. I am sure a lot of books go missing, binned or lost property boxes never to be seen again, but it is an interesting idea. I had heard of it but never thought I would come across a book involved. So I will be reading the book and then leaving it somewhere on the Island. It started in Ipswich and has now reached the Isle of Wight. Who knows where it will end up?

One step forward......

On Saturday got a letter from the hospital. The dreaded , "very sorry but you appointment has been cancelled" letter. A new appointment has been made for me, on 20th August now. I called Lynne to tell her as soon as I thought she would be in work and told her. She is not too happy to say the least. Luckily Natalie will be able to make it to the new appointment so there will still be someone there to point me, and the surgeon, in the right direction.
Then I decided that I needed to go to the GP as I have been feeling crap for over 2 weeks on and off. Poked around a bit by the doc, that hurt quite a bit, mostly on my left hand side, the part of my colon that was badly affected from the beginning. This could explain why I feel so bad with joint pain etc. Result: I am now back on prednisilone again, 40 mg a day!!! Only a 10 day dose with a reducing dose of 1 less each day. Better than 1 less a week but still wanted to avoid any more of those damn tablets.

On a plus side, not sure if it is though, the hernia belt arrived today. Very uncomfortable to wear and I am not sure how practical it will be do actually work wearing it. Good thing may be that I can say that I have tried it and it might be making things worse.
They say, whoever they are, every cloud has a silver lining. This is a bit of a thick cloud, haven't yet forund the lining.

Not good today

Had to take some prednisilone again today. Quite a bit of pain, not to do with the stoma or hernia though, passing mucus everyday at the moment so I assume I am well on the way to a flare up again. With the ileostomy in place I don't know what to expect, know all about the bloody diarrhoea when there is food passing through the whole of my system, but what to expect when the food is not going through my large intestine? Need to find out. When I saw the gastro registrar he said that if I had a problem with getting worse I should start the steroids again. I have not started them blindly or without thinking a lot about it, we all still remember how crabby, (putting it mildly!), I was on high doses so I have started 10mg a day to see if this improves things. Must go back on the IA website to ask for other opinions.

I wonder if this will alter things when I see the surgeon next week?

Back from a couple of days away

Well, made it away and back without needing the hospital! Felt a long way from home / hospital and so did not enjoy myself as much as I should have, this upset the kids and my wife, I have to make up for that somehow. Sorry Ruth! We stayed in a couple of different Travelodges, one night near Cambridge and one night near Rutland Water. Rutland is a lovely place, walked about 5 miles on last day of break, legs managed OK, but only just! That is the furthest I have walked in I don't know how long! Was mindful of my declaration that I am going to complete the Walk the Wight in 2008. Need to get a lot fitter!

The legs still ache and I feel rough but better than I expected so perhaps things aren't too bad. Good to get away from the house, it is too long to be stuck indoors.

Surgeon date changed

I have got a new date to see the surgeon about a repair to the hernia. I am now going to see him on 14th August. This is about 5 weeks earlier than originally so this is very helpful. I don't know how they repair hernias with a stoma, it can't be quite so straight forward, I will need to look into it.

Going away for a couple of days soon, that will be a real test as I have been feeling bad last couple of days, legs been aching again, this is a sign of a flare up, hope that it is just a coincidence.