Tiredness

I am finding it hard to do a full days work at the moment. I have been quite busy lately and I am suffering at the end of the day with tiredness. I am not sure if this is the illness or the tablets or more likely a combination of both. Still, not long to go now.

I need to get a blood test done to check my phenytoin levels but I am a bit on edge about getting it done as I need to get the test done before i take my morning dose. I have to get in to Ryde or Newport to get the test done and then i can take my morning dose but as I am quite tired at the moment I am wary of leaving it too late. Need to think on that one I think.

pre-assessment date

Git my pre-assessment date, lucky I called the hospital yesterday as the appointment is tomorrow! Not a lot of notice eh? Still the important thing is that I now know when it is. Only problem is that my youngest has a bad cold at the moment, spent Sunday in hospital cos of his asthma being bad due to the cold, and he has given it to me. Hope this doesn't have any impact on my assessment tomorrow. I still have enough time to get rid of the cold i hope!

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!

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.

surgery closer

Yesterday was my nephew's birthday, he became a teenager. My sister and her family live in Surrey on the outskirts of London and we don't get to see them very often unfortunately. I hope they will be able to come over to see me once I have had my surgery and am recovering, the last time they did come over to see us we went for a 'walk', that is to say we got in the car and drove to our closest beach, wandered round for a bit then I needed to toilet in a hurry and the public ones were closed so had to go home in a hurry. That is the story of my life at the moment. Always need to know where the nearest toilet is just in case. However this is going to change; had a call yesterday from the stoma team, my nurse, Lynne, spoke to my surgeon, a Mr. Nelson, and he said he wants to see me this week and operate in two weeks. This caused a small amount of consternation but at last I can see light at the end of the tunnel and it is now not a very long tunnel. I have been looking at every day being the same nightmare as the one before and knowing that nothing is going to change for the good in 6 months time. Now this is now the case. In 6 months I will be through the op and should be fully recovered and living a normal life, within certain restrictions possibly, but a better, more fulfilled life than I have been living for the last 6 months.

Stoma nurse appointment

Hi all
Went to see the stoma team today, 2 nurses for 400 people on the Island. At first I panicked a bit, seems a VERY small team for so many people with ostomys then thought that perhaps this was a good sign maybe once the op is out the way and things settle down things go so smoothly that they don't need many people to support them!
I was shown a couple of videos, one on how people cope after the op and one on changing the bag etc. I hadn't thought about how liquid the bag contents would be, that came as a surprise I am ashamed to admit. It just goes to show how efficient your large intestine is, or rather should be. I was given a info pack and there is a good section in one book called 'hints and tips', right near the beginning it has a diagram of the intestine and compares it to a washing machine! What comes out of the small intestine is the wet washing before entering the large intestine, or 'spin cycle'!
Another thing that surprised me was how different a stoma looks when it is moving as opposed to a still image. On video it you can see how flexible it is but a jpeg makes it look a lot firmer.
I am going to be put in touch with a couple of people in my age range that have had the op, we are looking at a loop ileostomy according to the nurse from my notes, that is what I was hoping for really so good news there. The surgeon has been off on holiday this week so that is why I have not had contact yet, Lynne, my nurse, will see him on Monday and say that I would like it done sooner rather than later, actually she said 'get it done asap' so that sounds good.
Ruth, my wife, came in to the appointment with me and we both had equal opportunity to ask questions and we both saw the videos, both had a look at the bags available, 1 piece and 2 piece bags.
How do I feel now? Scared and comforted in equal measure; looking forward to getting off the bulk of the medication, as I will still have a colon I will still need some, probably still need the asacol but hopefully can get off the prednisilone.
The question now is how well will i sleep tonight? I am quite tired so perhaps I will get to sleep at a reasonable time but be plagued with nightmares about being chased by surgeons or large stomas! Not a pleasant thought, trust me!
Mark

About me

OK, who am I? Sometimes I wonder myself lately. Quite a lot that defines me I don't have currently. The most important things are still there, my wife and 3 kids have been brilliant while I have not been well; my eldest, Ellie, is 10, the two boys, William and George, 7 and 6 respectively. They have all been shouted at a lot, due to the level of steroids I have been on mostly but also in part due to how low I have felt. There has been no end in sight and that is depressing, but with surgery on the way I am a lot more positive. With every day being like the one before and knowing that the next day will be the same there is only so much you can take before everything everyone says gets taken the wrong way. Completely unfair of me I know, that makes it worse; I know it is wrong to tell the kids off for something that all kids do but it is as if I am inside my body with no control over the person doing the shouting. This is hard on everyone. But they are still there for me, I know I am lucky.
I run my own business, that is to say I am the business so being housebound since last November has trashed everything really. I hope that my customers will come back to me once I am back fit again, I am good at my job so hopefully they will be back, but if not I will have to think long and hard about what I am going to do. Maybe I will have to become employed by someone else, I must admit that if I was tied to a desk working for someone else I could possibly work some days, but as my job entails driving sometimes from one end of the Island and back again with few, if any, toilets on the way, and that is an insurmountable problem at the moment, it is just not possible. So, once the operation is done and I am well again I can get back to work and back to walking with the family and fishing again. Possibly get out on my boat again!