To help me get off the tablets and get fit!

We have a new addition to the family! He is 8 weeks old and is a pointer / labrador cross. Very energetic to say the least.

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 We had a lot of chats early on but as he got worse he became more and more withdrawn and quiet.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.

Tiredness

I am finding it hard to do a full days work at the moment. I have been quite busy lately and I am suffering at the end of the day with tiredness. I am not sure if this is the illness or the tablets or more likely a combination of both. Still, not long to go now.

I need to get a blood test done to check my phenytoin levels but I am a bit on edge about getting it done as I need to get the test done before i take my morning dose. I have to get in to Ryde or Newport to get the test done and then i can take my morning dose but as I am quite tired at the moment I am wary of leaving it too late. Need to think on that one I think.

pre-assessment date

Git my pre-assessment date, lucky I called the hospital yesterday as the appointment is tomorrow! Not a lot of notice eh? Still the important thing is that I now know when it is. Only problem is that my youngest has a bad cold at the moment, spent Sunday in hospital cos of his asthma being bad due to the cold, and he has given it to me. Hope this doesn't have any impact on my assessment tomorrow. I still have enough time to get rid of the cold i hope!

3 weeks and counting

3 weeks to go and i get a sore throat! Only hope it goes away and isn't a precursor to something worse that will stop the surgery. Each day I get through now is a bonus as I am waiting for the pain I had a couple weeks back to hit me again. I am getting pain from the hernia most of the time so am taking painkillers quite a bit more than I want to. I do not have a date for a pre-assessment yet, trying to get hold of the hospital for a date for that but being Monday morning they are constantly busy! Oh well, must keep trying.

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!

off azathioprine

I am now off the azathioprine! been taking it for over a year now so the idea is to see what happens to me. The op in November left behind the rectum and a small piece of colon in case I wanted a reversal / pouch operation in the future. The idea is to see how things go when I am off the aza. I have been a bit unwell but the hope is that I will be ok. Let's hope so anyway!

anniversary passed without really noticing...

One year ago I had my loop ileostomy "installed". One month ago I started work again. One week ago I had the first sleep fit in 10 years. Life can be a real bitch sometimes.