what do i say now?

I went in to hospital on 27th July for a removal of rectal stump and anus as I had been having another bad flare up. On 28th July I had the operation. It all went wrong from there.
I ended up with 3 fistulas and 2 open wounds and spent 9 weeks in hospital. So here I am in December back on the fluoxetine since August when things just got too bad for me trying to look forward to Christmas and the new year. I had no food for 4 weeks and I lost 2 stone. Was put on a TPN feed. I was close to pulling it out on a lot of occasions let me tell you. If you don't know what it is let me explain; a tube is inserted into a vein in your neck or just above your collar bone and pushed through to just above your heart. It is then attached to a bag of nutrients that run direct into your body to try to keep you alive while not eating. I have told my wife that I flatly refuse to EVER have another one in. It was awful.
My mate Billy who is a nurse at St Marys hospital came to vist me very often and my family came each day to see me but I am told that I was not very nice during the early parts of my stay. Even this was not enough to stop me telling the nurses to stop trying to keep me alive and leave me to die as I felt so bad. Thus I ended up on the fluoxetine.
There was a guy in the bed next to me who had been in since mid June following removal of his colon due to cancer. His op had not gone at all well and he was in a real bad way. We had a lot of chats early on but as he got worse he became more and more withdrawn and quiet. I heard recently that he never got out and had died in the same ward. Goodbye John, you will be missed by all your family and friends.

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!

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.

Update long overdue

Since coming off the azathioprine things have not been going too well. Been suffering from some pain and passing blood again and it has been getting worse. Went to see the medical consultant last Monday and asked about the risks of being on azathioprine long term. He started with lymphoma and went on from there. So that sounds like not a good plan to me. The other option is another operation to remove the last bits left behind. I do not want a reversal, I can cope with the bag OK and there are some nasty complications that can, and in my case probably will, arise so I have opted for the operation. Just need to wait till I see the surgeon's team and wait for a date. They will repair the hernia for the second time too!

On another note, the DVLA came back to me and told me that I am OK to drive, I have to have a 3 year license and apply for a new one at the end of that but that is no problem. I have increased my medication and things should be OK for another 10 years!

off azathioprine

I am now off the azathioprine! been taking it for over a year now so the idea is to see what happens to me. The op in November left behind the rectum and a small piece of colon in case I wanted a reversal / pouch operation in the future. The idea is to see how things go when I am off the aza. I have been a bit unwell but the hope is that I will be ok. Let's hope so anyway!

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

Very long overdue update

I have been working on this entry for a long time, I kept deleting what I had written so here goes. Last October it all got too much for me and I ended up on anti-depression tablets. I went to see the surgeon about getting the op done in October and was told it would be 1 or 2 months. This did not help my state of mind cos when told that you only seem to hear the 2 months bit. So I am expecting end of December at this point. A long way off with more problems till I get there. However I actually went into hospital on 11th November and had op on the 12th.
The surgical team wanted to give me a epidural for pain relief after the operation but after 30 minutes of pain they gave up trying to get it in so I had to put up with normal morphine through the drip instead. The op went OK, took ages to come round again but all seemed OK, repaired the hernia and gave me a permanent ileostomy. This blog was supposed to be a diary of how I cope with a loop ileo for about 18 months. So how do I go on with it? Do I continue with it so other people can read it to see what sort of things we ostomates go through? I think I will probably keep it up for a while. Anyway, back to the post op time; was in one hell of a lot of pain following the operation, the morphine did not keep a lid on it and then to make things worse the surgical team took it away too soon anyway! I then managed to persuade the nurses that I needed something else and saw the acute pain nurse. I am not sure what they put me on but it worked a dream. Then I noticed that I was suffering from a lot of redness around the stoma. I had a nice little infection with cellulitis setting in. This was a worry for me as it did not seem to improve for a long time. Then to top it off I changed my bag one morning and I found I had 2 holes in my abdomen. This scared the crap out of me as I then told this was a fistula and I had a hole in my bowel somewhere that was emptying inside so my body made a route for this to escape. So I now had a stoma and to the right of this I had 2 holes draining crap into my bag. I found out that I was lucky as this problem is rare but there is no guarantee that a fistula will be anywhere near the stoma. It can appear anywhere so I was lucky that I could use one bag to collect the output and not have to have 2 bags stuck on me! So I get put on some extremely strong antibiotics through an IV and told that this should clear up the infection raging through my body, caused by the faeces emptying into my abdomen. Eventually I was taken off them and told that if I did not crash in 24 hours I should be OK. There was no tablet form of these antibiotics so I had to be OK with nothing before I could go home. Luckily after 2 days I had not got any worse and was allowed home.
Will leave it there for now and prob come back to it later.

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.

sigmoidoscopy results

Had the sigmoidoscopy yesterday; the results were not too good, Still have problems but it looks like the problems are both low down and possibly higher up than the sigmoidoscopy reaches. The surgeon said we have some very difficult decisions ahead. I felt bad and that made me feel a lot worse. How long will this go on? I think I am now facing having this temp ileostomy made permanent. I want a decision sooner rather than later so I can get on with my life. I have said this before though, this op was going to allow me to get back to work etc. It has not done so due to the hernia then having a flare up again has caused it to drag on and on.
That's all for now.

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.

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.

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?

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.