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.

hi

Want to clarify a bit; the last post was moaning about stuff. It is a year now since I became ill. If you are a bloke reading this and you think that you may be not well, do not put off going to the GP. Trust me on this. If I had gone sooner I would probably not be sitting here a year later waiting for the whole of my large intestine to be removed. I was too ill for any surgery at the time, I had a lot of infection but I was ill enough to need the surgery. It meant that I had to have a lot of medical intervention before surgery could be looked at. It sounds stupid but I wish I was not so ill but ill enough to still need surgery. OK, so I would have had to cope with an emergency op but surely that would be better than waiting a year and still not knowing the future? Each day takes is hard on me, I can't help thinking back to last year and thinking about how bad things were then. Instead of thinking that I am not that bad now, why am I feeling so crap?


Today is my wife's birthday so happy birthday Ruth. I know this last year has been real hard but I hope that we can stick it out and that this coming year is a whole lot better.

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?