update

been a couple of weeks since the last update. Been feeling real low lately again. Am now on some tablets for depression, that is how bad I am feeling. Seem to have taken a real backward step, OK so when I need the loo it is not as bad as before the op but it is still bad. The contents of the bag are causing me worry as it is real liquid again.
Seeing the surgeon on 4th October so hopefully I will get a proper plan in place as to what is going to happen. I am assuming another op to remove all the large intestine is on the cards. I hated this idea to start with but I am now so low I no longer care. I have run out of hope that ot will be possible to give me a pouch so the only option that I am aware of is take everything out. At least if it is colitis and not crohns that will be an end to it once and for all.


It's my mum's birthday today so happy birthday mum.

sigmoidoscopy results

Had the sigmoidoscopy yesterday; the results were not too good, Still have problems but it looks like the problems are both low down and possibly higher up than the sigmoidoscopy reaches. The surgeon said we have some very difficult decisions ahead. I felt bad and that made me feel a lot worse. How long will this go on? I think I am now facing having this temp ileostomy made permanent. I want a decision sooner rather than later so I can get on with my life. I have said this before though, this op was going to allow me to get back to work etc. It has not done so due to the hernia then having a flare up again has caused it to drag on and on.
That's all for now.

getting close to exam

So only a few days till I have the sigmoidoscopy. Feeling low still, hence the week since the last post. Not a lot to say really; bad headache and generally run down today, going over to some friends later so trying to cheer up. I think that as it is now a year since I first became ill it is really getting to me now. I was hoping to have a big party on my birthday this year as I felt so ill and worried last year but I don't think that will happen now.

bad both mentally and physically

Happy September.
Not that I feel happy today, feeling run down and generally crap today. Symptoms returning with a vengeance and my appointment for the sigmoidoscopy has been moved to the following week. I am getting fed up with appointments being moved so often. I think that perhaps cos I have just accepted it in the past there is a big tick on my records that says 'This person is a push over, move him!'

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?