Op date

OK, I have a date for my operation; 28th July 2008 three and bit weeks away. So on my Dad's birthday, 29th July I will be starting my new life without any colon or rectum. Sounds real serious I know to talk about not having a rectum and it is but that way i will have nothing left to be affected by this bloody disease with no risk of colon cancer, no more flare-ups no more taking azathioprine or prednisilone any more. That on its own is enough to have the operation done. They will be looking for adhesions and fixing the hernia properly at the same time, I talked to the surgeon about using some kind of pork based mesh to strengthen the repair and hopefully that is what will happen. So I am waiting for a date for the pre-assessment, that was missing from the letter from the hospital but I know that I must turn up at the hospital on 27th @ 2pm and the operation will be done the next day. Fingers crossed!

seen the surgeon

Today I saw my surgeon to discuss the fixing of the hernia. However something i hadn't thought of sort of took over. As I am in a flare-up and back on steroids he has said that something needs to be done with my colon and we saw my gastro consultant and told me that I need a sigmoidoscopy, basically a camera up my backside, to see how bad things are and decide what the best surgical procedure is as things need to be sorted out sooner rather than later. So I am waiting for an appointment to get that done, it is going to be a rush job apparently so next couple of weeks then get any op done sooner rather than later. I have a lot to think about so I will leave it here and put something up tomorrow maybe.

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.

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.

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.

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!!

Why me?

Life don't seem fair to me. Yesterday, Saturday, I found I have a hernia to add to my problems. This just doesn't seem right, dealing with an ileostomy is enough for someone, but I now have to deal with a hernia behind the stoma. This is causing me problems getting the bags to stick, had my first bag failure today. This is not a nice way to start the day, trust me. So I am sulking, not sure what will happen now.