Just got out of hospital again

Got taken in to hospital again following horrendous pain on Tuesday night. Seems that this time it is probably a loop of bowel trapped in the hernia and / or adhesions. Waiting for a date for the final operation, this might speed things along I suppose.

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!'

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?

Surgeon date changed

I have got a new date to see the surgeon about a repair to the hernia. I am now going to see him on 14th August. This is about 5 weeks earlier than originally so this is very helpful. I don't know how they repair hernias with a stoma, it can't be quite so straight forward, I will need to look into it.

Going away for a couple of days soon, that will be a real test as I have been feeling bad last couple of days, legs been aching again, this is a sign of a flare up, hope that it is just a coincidence.

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.