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.

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.

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

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.

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.

One step forward......

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.

Not good today

Had to take some prednisilone again today. Quite a bit of pain, not to do with the stoma or hernia though, passing mucus everyday at the moment so I assume I am well on the way to a flare up again. With the ileostomy in place I don't know what to expect, know all about the bloody diarrhoea when there is food passing through the whole of my system, but what to expect when the food is not going through my large intestine? Need to find out. When I saw the gastro registrar he said that if I had a problem with getting worse I should start the steroids again. I have not started them blindly or without thinking a lot about it, we all still remember how crabby, (putting it mildly!), I was on high doses so I have started 10mg a day to see if this improves things. Must go back on the IA website to ask for other opinions.

I wonder if this will alter things when I see the surgeon next week?

Back from a couple of days away

Well, made it away and back without needing the hospital! Felt a long way from home / hospital and so did not enjoy myself as much as I should have, this upset the kids and my wife, I have to make up for that somehow. Sorry Ruth! We stayed in a couple of different Travelodges, one night near Cambridge and one night near Rutland Water. Rutland is a lovely place, walked about 5 miles on last day of break, legs managed OK, but only just! That is the furthest I have walked in I don't know how long! Was mindful of my declaration that I am going to complete the Walk the Wight in 2008. Need to get a lot fitter!

The legs still ache and I feel rough but better than I expected so perhaps things aren't too bad. Good to get away from the house, it is too long to be stuck indoors.

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!

Hernia repair?

I had a call from Natalie, one of the stoma team here on the Island the other day. She has been talking to Lynne about possibly getting the surgeon to see me earlier than September. They are of the opinion that it would be a good idea to get the hernia repaired as it seems that all the discomfort and pain I am getting is to do with the hernia and not to do with the stoma. (Apart from the paralysed intestine agony that is!)
I said that I would like them to see if they can bring things forward as I really want to get back to work as soon as possible; having been measured up for the hernia belt I am waiting for it to be returned so I can hopefully get working again. The belt may be enough but a repair would definitely be better in the long run.

We have some friends staying with us for a few days and the weather is crap but compared to some further north who are suffering from flooding, no fresh water and no power we are very lucky. If you are one of the people who has suffered in the recent floods we feel for you.

Stoma nurse visit

Been to see the stoma team at St Mary's this afternoon and had the hernia belt fitted. It needs a hole cut in it as the bag needs to poke through it or the stoma won't work. I said about should I nag to get the hernia repaired and Lynne said see how the belt goes then think about it. The big thing is if I need to get the ileostomy is to be made permanent then they will repair it but that is 12 to 18 months away. I am not sure how I will cope with a hernia all that time. I will give the belt a try and see.

On the work front I have decided to see how the first 3 months of running the business go. If I can't get enough work then I will give in and become employed instead of self employed. This is going to be a hard decision to make when the time comes. Just have to hope that when I start up again I will get my old customers back again.

been to see gastroenterologist

Hi
I went to see my gastroenterologist yesterday. I saw one of his registrars, Dr. Sheppard, I saw him last week during my unexpected stay in hospital so the appointment was not really necessary I suppose but I went anyway. Thought we may talk about the options for when I no longer this ileostomy but this was not really spoken about. He suggested that I should push to get the hernia fixed before the reversal and I was pleased he did really. I would like it fixed as it is causing me some discomfort and it is a pain having to go careful with what I do all the time. I was not planning on having to cope with this as well as the ileostomy. I am seeing Lynne or Natalie, the stoma team, this afternoon about the hernia belt, it finally arrived, and I will mention Dr. Sheppard's comments to them.
Mark

Saturday

Quite tired today, had a scare earlier, I have had a few more twinges throughout the day and I needed to change my bag over for new one. The stoma was not working or moving much at the time, never look a gift horse in the mouth as they say; a stoma will work, or empty, at the most inappropriate times, normally when you are all cleaned up and ready to put on a new bag. So no extra mess to clean up seems OK, till you realise 2 hours later that the bag is as empty as when you put it on. Is it going to seize up again? I hope not. I have increased the amount I have drunk and also eaten more salt to head off any more problems. Fingers crossed...

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

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.

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.