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 We had a lot of chats early on but as he got worse he became more and more withdrawn and quiet.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

Today is a milestone for me.

Yes, today is a real big milestone. I got back to work today! Computer Troubleshooters IOW are now open for business again. There were many days when I thought that this day would never come but it has arrived at last. It is a very special day in another way as well, it is my daughter's birthday, so happy birthday Ellie. The fact that I have got back to work on such an important day means a hell of a lot to me. Things are not perfect by any stretch of the imagination but I have to start work or go completely mad, or possibly be murdered by my wife, one way or another I am better off out the house!

I have decided that I will be keeping this blog going a bit longer, even though the point was originally as a diary for a short while. So what to use it for now I wonder? I would welcome any comments you may have so I know what you want to see here. I will open it up as a discussion site maybe. Drop some comments on here and we shall see what happens.
Mark

Very long overdue update

I have been working on this entry for a long time, I kept deleting what I had written so here goes. Last October it all got too much for me and I ended up on anti-depression tablets. I went to see the surgeon about getting the op done in October and was told it would be 1 or 2 months. This did not help my state of mind cos when told that you only seem to hear the 2 months bit. So I am expecting end of December at this point. A long way off with more problems till I get there. However I actually went into hospital on 11th November and had op on the 12th.
The surgical team wanted to give me a epidural for pain relief after the operation but after 30 minutes of pain they gave up trying to get it in so I had to put up with normal morphine through the drip instead. The op went OK, took ages to come round again but all seemed OK, repaired the hernia and gave me a permanent ileostomy. This blog was supposed to be a diary of how I cope with a loop ileo for about 18 months. So how do I go on with it? Do I continue with it so other people can read it to see what sort of things we ostomates go through? I think I will probably keep it up for a while. Anyway, back to the post op time; was in one hell of a lot of pain following the operation, the morphine did not keep a lid on it and then to make things worse the surgical team took it away too soon anyway! I then managed to persuade the nurses that I needed something else and saw the acute pain nurse. I am not sure what they put me on but it worked a dream. Then I noticed that I was suffering from a lot of redness around the stoma. I had a nice little infection with cellulitis setting in. This was a worry for me as it did not seem to improve for a long time. Then to top it off I changed my bag one morning and I found I had 2 holes in my abdomen. This scared the crap out of me as I then told this was a fistula and I had a hole in my bowel somewhere that was emptying inside so my body made a route for this to escape. So I now had a stoma and to the right of this I had 2 holes draining crap into my bag. I found out that I was lucky as this problem is rare but there is no guarantee that a fistula will be anywhere near the stoma. It can appear anywhere so I was lucky that I could use one bag to collect the output and not have to have 2 bags stuck on me! So I get put on some extremely strong antibiotics through an IV and told that this should clear up the infection raging through my body, caused by the faeces emptying into my abdomen. Eventually I was taken off them and told that if I did not crash in 24 hours I should be OK. There was no tablet form of these antibiotics so I had to be OK with nothing before I could go home. Luckily after 2 days I had not got any worse and was allowed home.
Will leave it there for now and prob come back to it later.