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.

A good day.

Yesterday was a real good day; went for a lovely walk and did not get too tired during or after. The weather was great, (unlike some friends who live in Filey in North Yorkshire, BBC story. They were lucky and their shop escaped the worst of it, unlike a lot of others).
The weather is nice again today, my boys have their sports day later so I will be going there then. Won't be running in the dad's race tho!
Bye for now

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.