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.

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.

life

I know that life will be a lot better once I have had the ileostomy and I am looking forward to getting to do stuff again so much. It is great that I have a date for the operation and it is not too long away. I just wish it was next week not the week after. I am in a lot of pain today, can't sit properly because of it. I don't think sitting on one buttock is too good for my back but is the only way I can sit to write this. Put all my weight squarely on my backside and I have to get up again. Yes I will be in pain immediately after the operation and I will have a lot of getting used to my new life, but at least I should be able to sit properly!
Went to see the doctor today as I have a cough and sinus problems, wouldn't normally go but if it gets on my chest I will not be able to have the operation so thought it best to check. OK at the moment though. Fingers crossed.

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.

Not too good today

As the title suggests I am not too good today. Yesterday, Saturday, was not a particularly good day for me, woke up around 2:30 and couldn't sleep after that so got up at 3. Boy does that make a l-o-n-g day of it. Managed to get through the day but in the evening I felt so tired I just about managed to read to my eldest boy and promptly fell asleep after finishing. I should have taken this as a sign that things were not right. Went to have a bath a bit later on as this helps with some of my problems, such as wiping your backside,( even with so called soft toilet paper the number of times I have over the last 6 months), makes you so sore it is like I would imagine using sandpaper would be. The bath helps with this feeling, but I fell asleep in the bath and woke up bloody freezing cold. Went to bed around 21:30 and fell asleep straight away. When I woke this morning I felt like I was coming down with the flu, not surprising as my eldest has been off school with a badly sore and swollen throat, the doc says it isn't tonsillitis but I wonder as the tonsils seem to be twice the size I would expect. Anyway, first trip to the toilet of the day was very urgent and had a lot of bloody mucus, that is to say both mucus with blood in it and 'bloody mucus!'. I have not had this much for a while so I may have to be increasing my prednisilone again, back up to 40mg a day. Just when I was doing so well and had got down to 15mg a day.

Anyway, my feeling on the ileostomy operation have not changed a lot, only thing I am wondering about is perhaps I should have the whole lot out and not bother with a temporary solution. If I can't get off the steroids now, what will happen when I have had the op and am using the bag instead? Something else to ask the surgeon and consultant I suppose.

In case you were wondering, I have not been dreaming about being chased by giant stomas yet, that is something straight out of a Monty Python's Flying Circus! I am sure only they could do it justice!

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!