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.
Showing posts with label me. Show all posts
Showing posts with label me. Show all posts
Monday, 13 August 2007
Saturday, 28 July 2007
new bags on test!
Hi
I am trying some new bags at the request of the stoma team. They are made by the same company as the last ones, Salts, but they are a lot softer and pliable. This seems to make them a lot more comfortable and forgiving, I have had 2 bags last for 3 days each. This is good for me, especially as I changed them both after 3 days because I thought I should, not cos they were leaking. I have ordered some more from my usual supplier but they did not have any in stock, so new are they. I was given 5 to try by Lynne, I need tell her how I am getting on with them.
The fact I have lost quite a lot of weight since the op seems to make things so much easier for me in respect of the bags sticking better, I suppose it is due to the fact they are not being expected to bend so much to cope with the spare tyres!
I am still waiting for the hernia belt to come back to me, hope that comes soon. Also waiting to see if I get to see the surgeon sooner than September. I have thought long and hard about the idea of a repair and have decided that I want it repaired now. not in 12 - 18 months time. I didn't ask for this complication, it is hard enough coping with a stoma on its own.
Our friends went home yesterday, and they left on the first day which we have had no rain till the evening for a long while. So at least they got a dry day at the end of their short stay, even if it was cold and windy. Where is the summer I ask you!
I am trying some new bags at the request of the stoma team. They are made by the same company as the last ones, Salts, but they are a lot softer and pliable. This seems to make them a lot more comfortable and forgiving, I have had 2 bags last for 3 days each. This is good for me, especially as I changed them both after 3 days because I thought I should, not cos they were leaking. I have ordered some more from my usual supplier but they did not have any in stock, so new are they. I was given 5 to try by Lynne, I need tell her how I am getting on with them.
The fact I have lost quite a lot of weight since the op seems to make things so much easier for me in respect of the bags sticking better, I suppose it is due to the fact they are not being expected to bend so much to cope with the spare tyres!
I am still waiting for the hernia belt to come back to me, hope that comes soon. Also waiting to see if I get to see the surgeon sooner than September. I have thought long and hard about the idea of a repair and have decided that I want it repaired now. not in 12 - 18 months time. I didn't ask for this complication, it is hard enough coping with a stoma on its own.
Our friends went home yesterday, and they left on the first day which we have had no rain till the evening for a long while. So at least they got a dry day at the end of their short stay, even if it was cold and windy. Where is the summer I ask you!
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.
Thursday, 26 April 2007
About me
OK, who am I? Sometimes I wonder myself lately. Quite a lot that defines me I don't have currently. The most important things are still there, my wife and 3 kids have been brilliant while I have not been well; my eldest, Ellie, is 10, the two boys, William and George, 7 and 6 respectively. They have all been shouted at a lot, due to the level of steroids I have been on mostly but also in part due to how low I have felt. There has been no end in sight and that is depressing, but with surgery on the way I am a lot more positive. With every day being like the one before and knowing that the next day will be the same there is only so much you can take before everything everyone says gets taken the wrong way. Completely unfair of me I know, that makes it worse; I know it is wrong to tell the kids off for something that all kids do but it is as if I am inside my body with no control over the person doing the shouting. This is hard on everyone. But they are still there for me, I know I am lucky.
I run my own business, that is to say I am the business so being housebound since last November has trashed everything really. I hope that my customers will come back to me once I am back fit again, I am good at my job so hopefully they will be back, but if not I will have to think long and hard about what I am going to do. Maybe I will have to become employed by someone else, I must admit that if I was tied to a desk working for someone else I could possibly work some days, but as my job entails driving sometimes from one end of the Island and back again with few, if any, toilets on the way, and that is an insurmountable problem at the moment, it is just not possible. So, once the operation is done and I am well again I can get back to work and back to walking with the family and fishing again. Possibly get out on my boat again!
I run my own business, that is to say I am the business so being housebound since last November has trashed everything really. I hope that my customers will come back to me once I am back fit again, I am good at my job so hopefully they will be back, but if not I will have to think long and hard about what I am going to do. Maybe I will have to become employed by someone else, I must admit that if I was tied to a desk working for someone else I could possibly work some days, but as my job entails driving sometimes from one end of the Island and back again with few, if any, toilets on the way, and that is an insurmountable problem at the moment, it is just not possible. So, once the operation is done and I am well again I can get back to work and back to walking with the family and fishing again. Possibly get out on my boat again!
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