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 We had a lot of chats early on but as he got worse he became more and more withdrawn and quiet.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.
Showing posts with label post-op. Show all posts
Showing posts with label post-op. Show all posts
Saturday, 6 December 2008
Saturday, 17 May 2008
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.
Tuesday, 12 February 2008
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.
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.
Friday, 13 July 2007
Another day...
Today I feel a lot better than last night when I posted the last entry. Still having twinges and a little sickness feeling but not letting it get me down at all. When I left hospital, St Mary's in case I have not said which one, (we only have one on the island), one of the nicest nurses there called Helen said to me to make sure I kept up with the pain killers they had prescribed even if I felt OK. I have done this today, going to have my next batch shortly.
One thing that I have been suffering from is dizziness a bit lately. I went to see my GP about it and she took my blood pressure sitting and standing. It dropped when standing so she told me to increase my fluid intake. While in hospital I had no spells of dizziness and was drinking a lot of water as it meant that I could come off the drip. It is not easy to drink enough water, with an ileostomy we need to drink over 2 litres a day, more if the weather is hot or we are working hard. Today I have not drunk enough I know and I have been feelin giddy so I guess she is right. So back on the water bottle again.
All for now, check out some of the comments I have been receiving, one very interesting one from someone who has suffered from paralysed intestine 3 times in 9 months. I did not want to hear that let me tell you!!! Was hoping for a one off experience. Still I am seeing my gastro consultant on Monday so I will discuss the likelihood of it happening again with him.
Bye
One thing that I have been suffering from is dizziness a bit lately. I went to see my GP about it and she took my blood pressure sitting and standing. It dropped when standing so she told me to increase my fluid intake. While in hospital I had no spells of dizziness and was drinking a lot of water as it meant that I could come off the drip. It is not easy to drink enough water, with an ileostomy we need to drink over 2 litres a day, more if the weather is hot or we are working hard. Today I have not drunk enough I know and I have been feelin giddy so I guess she is right. So back on the water bottle again.
All for now, check out some of the comments I have been receiving, one very interesting one from someone who has suffered from paralysed intestine 3 times in 9 months. I did not want to hear that let me tell you!!! Was hoping for a one off experience. Still I am seeing my gastro consultant on Monday so I will discuss the likelihood of it happening again with him.
Bye
Spoke too soon!
After a few good days I was thinking that life was going real good. On Friday I managed to take my boys to the local 'soft play' centre, Space Island, (I recommend it to anyone on the Island looking for something to do when it is wet), and in the afternoon I took my eldest boy fishing, (he fished I helped). We went to the lifeboat pier and he caught some wrasse and was so happy it made my week. Then Saturday I said to my wife that I had almost forgotten about the bag and everything. So things were looking good. The hernia belt arrived on Friday so I was going to call the stoma team on Monday to arrange for the hole to be marked so I can start wearing the belt and get back to work. Then Sunday evening I get a belly ache. I went to bed for a bit but it got worse so I got up. It got worse again so went back to bed, mostly just to be near my wife in case it got any worse. It did so we called the out of hours doc. We are lucky in that we have our own version of NHS Direct here, we used NHS Direct before for my youngest and they had no clue about how the Island is in the middle of the Christmas holiday and they assumed that cos we live 13 miles from the nearest / only hospital we can get there in 10 minutes or so. Not the case. Trust me.
Anyway, when I went through my history with the person on the phone they said that I needed an ambulance to take me to A & E straight away. The pain is increasing all the time now so I did not argue. So I wait for the ambulance to arrive which it duly did. We called our best friend to see if she could look after the kids for us, (Lu we love you!), she arrived just before the ambulance so Ruth could follow the ambulance to hospital in our car. I get started on gas and air in the ambulance, apart from making me feel drunk it did nothing for the pain. I then get 2 shots of morphine which did dull it a bit but not enough. This is the first time I have been in an ambulance, I wonder if they all rattle that much?
I get to the hospital and get wheeled straight in. This is the fastest I have ever got to see a doctor. Normally you go and get seen by a nurse who decides if you need to see another nurse and then a doc. This time I saw a fantastic nurse and 2 brilliant doctors who poke and prod and give me some pain killers that don't work.
I then end up on the ward that I was on after the operation, 7 weeks ago! As well as the pain my stoma has stopped putting out anything at all. The two things are linked here, no output and pain, one is causing the other I think to myself and it must be a blockage, something I have eaten.
To cut a very long story not very short, the stoma started working sometime on Monday. I thought it had hurt the night before, little did I know how much it was going to hurt when it started to work again. Two years ago I had gall stone problems and had my gall bladder removed. The pain then was not as bad as the pain when the stoma started to work again. I thought this was not possible! It turns out that part of my small bowel had suffered from a kind of paralysis but only part of it, meaning that where the rest was working OK it meant that everything jammed up. This was probably due to a salt imbalance so I now have to be more aware about how much salt I am eating. Most of you are trying to cut down I expect. People with ileostomies have to eat more as we don't absorb enough from our food. I thought I was eating enough but apparently not!
So I got out on Wednesday, another 3 days wasted. Although I did get some more studying for my OU degree done on Tuesday, not really a lot to say about Monday other than I was in so much pain I DO NOT WANT A REPEAT OF THAT UNDER ANY CIRCUMSTANCES!!!
So, back home and noticing every twinge and grumble and hoping that each twinge is just that, not a precursor to anything more.
So, that is it for now, going to empty me bag and go to bed now, it's late and I have had enough.
Anyway, when I went through my history with the person on the phone they said that I needed an ambulance to take me to A & E straight away. The pain is increasing all the time now so I did not argue. So I wait for the ambulance to arrive which it duly did. We called our best friend to see if she could look after the kids for us, (Lu we love you!), she arrived just before the ambulance so Ruth could follow the ambulance to hospital in our car. I get started on gas and air in the ambulance, apart from making me feel drunk it did nothing for the pain. I then get 2 shots of morphine which did dull it a bit but not enough. This is the first time I have been in an ambulance, I wonder if they all rattle that much?
I get to the hospital and get wheeled straight in. This is the fastest I have ever got to see a doctor. Normally you go and get seen by a nurse who decides if you need to see another nurse and then a doc. This time I saw a fantastic nurse and 2 brilliant doctors who poke and prod and give me some pain killers that don't work.
I then end up on the ward that I was on after the operation, 7 weeks ago! As well as the pain my stoma has stopped putting out anything at all. The two things are linked here, no output and pain, one is causing the other I think to myself and it must be a blockage, something I have eaten.
To cut a very long story not very short, the stoma started working sometime on Monday. I thought it had hurt the night before, little did I know how much it was going to hurt when it started to work again. Two years ago I had gall stone problems and had my gall bladder removed. The pain then was not as bad as the pain when the stoma started to work again. I thought this was not possible! It turns out that part of my small bowel had suffered from a kind of paralysis but only part of it, meaning that where the rest was working OK it meant that everything jammed up. This was probably due to a salt imbalance so I now have to be more aware about how much salt I am eating. Most of you are trying to cut down I expect. People with ileostomies have to eat more as we don't absorb enough from our food. I thought I was eating enough but apparently not!
So I got out on Wednesday, another 3 days wasted. Although I did get some more studying for my OU degree done on Tuesday, not really a lot to say about Monday other than I was in so much pain I DO NOT WANT A REPEAT OF THAT UNDER ANY CIRCUMSTANCES!!!
So, back home and noticing every twinge and grumble and hoping that each twinge is just that, not a precursor to anything more.
So, that is it for now, going to empty me bag and go to bed now, it's late and I have had enough.
Wednesday, 4 July 2007
things ok at the moment
As the title says, things are not too bad at the moment. On the whole the appliances I am using are lasting ok, I get a couple of days out of them which is nice. The worst thing is to have to change the bag when it decides rather than me. If I need to change it because it is leaking you can bet your life the stoma is going to be working at the same time. The biggest problem is the skin under the stoma is still sore and bleeding. I now have some goo that I have to lump on top of the skin to form a barrier between the output and the weeping skin. This is working ok at the moment but I will be glad when it is healed and I won't have to slap it in. It is an alcohol based paste and it does sting a bit! (That's putting it mildly).
So, life is improving now, the hernia belt still not arrived so that is causing worries but hopefully that will be here soon and I can get back to work. I am able to get out and about, walking a lot further than I have been for about 8 months feels so nice. Still intend doing the Walk the Wight next year so better get fit.
That's all for now.
So, life is improving now, the hernia belt still not arrived so that is causing worries but hopefully that will be here soon and I can get back to work. I am able to get out and about, walking a lot further than I have been for about 8 months feels so nice. Still intend doing the Walk the Wight next year so better get fit.
That's all for now.
Wednesday, 20 June 2007
At last....
It is a long time since the last update. I have had a lot of problems getting an appliance or bag to fit and stay on more that a few hours. The problem is the hernia sticking out and causing a crease that the bags are having a hard time sticking to. I am now using a convex shaped flange, (you gotta love that word 'flange' not sure what it is but it has always made me smile), that sort of pushes back against my skin so the sticky bit of the flange stays on better. Even this has been fraught with problems though, I have been through 3 different types of these! Now using one made by a company called Salts and hopefully this one will do. I seem to be able to get days out of a bag, even managed 3 once but that was pushing it though.
On a more positive note, I am now getting out with the family again, that is a real big thing for me, having spent so long stuck at home while everyone else tried to live a normal life around me. One thing that is helping this is the fact I am now off the dreaded prednisilone, the steroid I have been on since last November. This has a couple of side effects, stomach ulcers, osteoporosis and the the thing that got to everyone was the mood swings and short temper. I always have had a short temper but on the prednisilone it has got an awful lot shorter, making the kids life hell. Not to mention some of my oldest friends and my wife! Still, that is in the past, assuming everything settles down again.
So I now need to get fit, lose some more weight, I have lost around 16 pounds so far, and get fishing again! I bought my eldest son a new fishing rod so he is looking forward to going fishing as soon as I get the OK from the surgeon, I see him on the 29th June.
Things are on the up then, the bags I have to use at the moment are not the best or most comfortable but they allow me some kind of life again. I have been suffering from dizziness but this is probably due to a mixture of lack of liquids, (I have to drink a lot more water than before the operation), and my haemoglobin being low. I saw the GP and she said to eat more red meat! I love instructions like that!!
On a more positive note, I am now getting out with the family again, that is a real big thing for me, having spent so long stuck at home while everyone else tried to live a normal life around me. One thing that is helping this is the fact I am now off the dreaded prednisilone, the steroid I have been on since last November. This has a couple of side effects, stomach ulcers, osteoporosis and the the thing that got to everyone was the mood swings and short temper. I always have had a short temper but on the prednisilone it has got an awful lot shorter, making the kids life hell. Not to mention some of my oldest friends and my wife! Still, that is in the past, assuming everything settles down again.
So I now need to get fit, lose some more weight, I have lost around 16 pounds so far, and get fishing again! I bought my eldest son a new fishing rod so he is looking forward to going fishing as soon as I get the OK from the surgeon, I see him on the 29th June.
Things are on the up then, the bags I have to use at the moment are not the best or most comfortable but they allow me some kind of life again. I have been suffering from dizziness but this is probably due to a mixture of lack of liquids, (I have to drink a lot more water than before the operation), and my haemoglobin being low. I saw the GP and she said to eat more red meat! I love instructions like that!!
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