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 We had a lot of chats early on but as he got worse he became more and more withdrawn and quiet.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.

3 weeks and counting

3 weeks to go and i get a sore throat! Only hope it goes away and isn't a precursor to something worse that will stop the surgery. Each day I get through now is a bonus as I am waiting for the pain I had a couple weeks back to hit me again. I am getting pain from the hernia most of the time so am taking painkillers quite a bit more than I want to. I do not have a date for a pre-assessment yet, trying to get hold of the hospital for a date for that but being Monday morning they are constantly busy! Oh well, must keep trying.

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!

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!

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.

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.

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.

Op complete

Well the op has been done. Went down to the theatre yesterday at 8:30, came back to ward at 2pm after spending a few hours in the recovery area. I spent the day feeling like crap, I think I told someone I felt like I had been hit by a truck. Don't feel too good today either. My surgeon came up to see me and he tells me he looked around inside and could not see any sign of problems with my small intestine, hopefully this means that I have UC not Crohns although we can't be sure. I am on some liquid morphine for the pain, which is still quite high when the morphine and paracetamol wear off.

Saw one of the stoma nurses today and she changed the bag for me, I think I have to do it myself soon.

I am having to write this lot down as the computer system we have at the bedside, Patientline, won't allow me to log in to this blog so writing stuff down and I will upload when I am back home.

Rambling now so this will do for today.

Soon becoming a bag man

Well I have been to see the soma support nurses again. This time I have come away with a fake stoma attached to me and a bag on. This is to try to find the best place for the final stoma. Couple of problems so far, the ideal place is much too high, in order that I can get trousers to cover up the stoma and bag I will need to wear trousers the same way as that twat Simon Cowell, much too high up. SO I need to get it put a bit lower down when the op is done. I hope this is OK as I really don't like waistband being too high, really uncomfortable. Other problem associated with the height of the waistband is due to the amount of weight I have to lose. My 'spare tyre' means that my trousers try to slide down towards my hips, not a problem at the moment but it looks like they will stop bang on top of the stoma. Probably not a good idea! Then of course, if the are below the stoma then the output will fill the top half of the bag and be stopped from going towards the bottom of the bag, bit like people who have a gastric band fitted! OK for them but not a good idea to have a stoma sitting in the output I think, it seems that it is quite acidic, something your large intestine sorts out but as I will not be using the large intestine any longer that part of the process will not be taking place.

One possible problem that the stoma care nurse mentioned was that she asked me what operation I was having. I was a bit confused and I said a loop ileostomy, why I asked her. She told me that she saw a list of upcoming operations and I am down for a colostomy. This is a similar op but done at the other end of the colon. As the whole idea is to rest my colon by bypassing it that is not going to achieve anything! She told me to make sure that when I sign the consent form to make doubly sure that I am consenting to the right operation. I will probably check that I have a bag attached to the right-hand side of my body as the very first thing I do when I come round on Monday! Anything on the left is WRONG!!!

Pre-assessment tomorrow so fingers crossed I am fit enough for the operation, if not I will be really pissed off!

On another note, today is my sister's birthday, so happy birthday Alison.

Been to see the surgeon

I have just returned from the hospital, seeing the surgeon who is going to operate on me. We had a good chat about the options, he said that they are still not sure if I have crohns or ulcerative colitis and the options are based on that lack of a firm diagnosis. I will be having a loop ileostomy as a temporary solution with follow ups to see if I am improving. If I improve then I can have the loop removed and I can be joined up back to normal, if there are still problems then I get the whole colon removed and I live with the ileostomy for ever. I have a date too, 14th May with a 7 to 10 day stay in hospital.