what do i say now?

I went in to hospital on 27th July for a removal of rectal stump and anus as I had been having another bad flare up. On 28th July I had the operation. It all went wrong from there.
I ended up with 3 fistulas and 2 open wounds and spent 9 weeks in hospital. So here I am in December back on the fluoxetine since August when things just got too bad for me trying to look forward to Christmas and the new year. I had no food for 4 weeks and I lost 2 stone. Was put on a TPN feed. I was close to pulling it out on a lot of occasions let me tell you. If you don't know what it is let me explain; a tube is inserted into a vein in your neck or just above your collar bone and pushed through to just above your heart. It is then attached to a bag of nutrients that run direct into your body to try to keep you alive while not eating. I have told my wife that I flatly refuse to EVER have another one in. It was awful.
My mate Billy who is a nurse at St Marys hospital came to vist me very often and my family came each day to see me but I am told that I was not very nice during the early parts of my stay. Even this was not enough to stop me telling the nurses to stop trying to keep me alive and leave me to die as I felt so bad. Thus I ended up on the fluoxetine.
There was a guy in the bed next to me who had been in since mid June following removal of his colon due to cancer. His op had not gone at all well and he was in a real bad way. We had a lot of chats early on but as he got worse he became more and more withdrawn and quiet. I heard recently that he never got out and had died in the same ward. Goodbye John, you will be missed by all your family and friends.

Op date

OK, I have a date for my operation; 28th July 2008 three and bit weeks away. So on my Dad's birthday, 29th July I will be starting my new life without any colon or rectum. Sounds real serious I know to talk about not having a rectum and it is but that way i will have nothing left to be affected by this bloody disease with no risk of colon cancer, no more flare-ups no more taking azathioprine or prednisilone any more. That on its own is enough to have the operation done. They will be looking for adhesions and fixing the hernia properly at the same time, I talked to the surgeon about using some kind of pork based mesh to strengthen the repair and hopefully that is what will happen. So I am waiting for a date for the pre-assessment, that was missing from the letter from the hospital but I know that I must turn up at the hospital on 27th @ 2pm and the operation will be done the next day. Fingers crossed!

Just got out of hospital again

Got taken in to hospital again following horrendous pain on Tuesday night. Seems that this time it is probably a loop of bowel trapped in the hernia and / or adhesions. Waiting for a date for the final operation, this might speed things along I suppose.

Update long overdue

Since coming off the azathioprine things have not been going too well. Been suffering from some pain and passing blood again and it has been getting worse. Went to see the medical consultant last Monday and asked about the risks of being on azathioprine long term. He started with lymphoma and went on from there. So that sounds like not a good plan to me. The other option is another operation to remove the last bits left behind. I do not want a reversal, I can cope with the bag OK and there are some nasty complications that can, and in my case probably will, arise so I have opted for the operation. Just need to wait till I see the surgeon's team and wait for a date. They will repair the hernia for the second time too!

On another note, the DVLA came back to me and told me that I am OK to drive, I have to have a 3 year license and apply for a new one at the end of that but that is no problem. I have increased my medication and things should be OK for another 10 years!

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.

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.

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?