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.

getting close to exam

So only a few days till I have the sigmoidoscopy. Feeling low still, hence the week since the last post. Not a lot to say really; bad headache and generally run down today, going over to some friends later so trying to cheer up. I think that as it is now a year since I first became ill it is really getting to me now. I was hoping to have a big party on my birthday this year as I felt so ill and worried last year but I don't think that will happen 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.

good morning.... i don't think

Not a nice way to start the day. Woke up covered in crap as the bag had failed again. When people like me say they had a bag fail what they really mean is that the sodding thing came unstuck and the contents came out over themselves and their clothes. As I say, not a nice way to wake up.

On another note

Been meaning to post about the book I found in Kings Lynn. Called the Great Pyramid Robbery it had a sticky note stuck to the front talking about Book Crossing. It is a book that you read then leave it somewhere else for anyone who cares to do so also picks it up and reads it then leaves it somewhere .... you get the idea. There is a unique code in the book that you can enter in the Book Crossing website and you can see where the book has been before you found it and then you can keep an eye on it once you leave it. I am sure a lot of books go missing, binned or lost property boxes never to be seen again, but it is an interesting idea. I had heard of it but never thought I would come across a book involved. So I will be reading the book and then leaving it somewhere on the Island. It started in Ipswich and has now reached the Isle of Wight. Who knows where it will end up?

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?

Back from a couple of days away

Well, made it away and back without needing the hospital! Felt a long way from home / hospital and so did not enjoy myself as much as I should have, this upset the kids and my wife, I have to make up for that somehow. Sorry Ruth! We stayed in a couple of different Travelodges, one night near Cambridge and one night near Rutland Water. Rutland is a lovely place, walked about 5 miles on last day of break, legs managed OK, but only just! That is the furthest I have walked in I don't know how long! Was mindful of my declaration that I am going to complete the Walk the Wight in 2008. Need to get a lot fitter!

The legs still ache and I feel rough but better than I expected so perhaps things aren't too bad. Good to get away from the house, it is too long to be stuck indoors.

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.

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.

A good day.

Yesterday was a real good day; went for a lovely walk and did not get too tired during or after. The weather was great, (unlike some friends who live in Filey in North Yorkshire, BBC story. They were lucky and their shop escaped the worst of it, unlike a lot of others).
The weather is nice again today, my boys have their sports day later so I will be going there then. Won't be running in the dad's race tho!
Bye for now

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.

been to see gastroenterologist

Hi
I went to see my gastroenterologist yesterday. I saw one of his registrars, Dr. Sheppard, I saw him last week during my unexpected stay in hospital so the appointment was not really necessary I suppose but I went anyway. Thought we may talk about the options for when I no longer this ileostomy but this was not really spoken about. He suggested that I should push to get the hernia fixed before the reversal and I was pleased he did really. I would like it fixed as it is causing me some discomfort and it is a pain having to go careful with what I do all the time. I was not planning on having to cope with this as well as the ileostomy. I am seeing Lynne or Natalie, the stoma team, this afternoon about the hernia belt, it finally arrived, and I will mention Dr. Sheppard's comments to them.
Mark

Saturday

Quite tired today, had a scare earlier, I have had a few more twinges throughout the day and I needed to change my bag over for new one. The stoma was not working or moving much at the time, never look a gift horse in the mouth as they say; a stoma will work, or empty, at the most inappropriate times, normally when you are all cleaned up and ready to put on a new bag. So no extra mess to clean up seems OK, till you realise 2 hours later that the bag is as empty as when you put it on. Is it going to seize up again? I hope not. I have increased the amount I have drunk and also eaten more salt to head off any more problems. Fingers crossed...

Another day...

Today I feel a lot better than last night when I posted the last entry. Still having twinges and a little sickness feeling but not letting it get me down at all. When I left hospital, St Mary's in case I have not said which one, (we only have one on the island), one of the nicest nurses there called Helen said to me to make sure I kept up with the pain killers they had prescribed even if I felt OK. I have done this today, going to have my next batch shortly.
One thing that I have been suffering from is dizziness a bit lately. I went to see my GP about it and she took my blood pressure sitting and standing. It dropped when standing so she told me to increase my fluid intake. While in hospital I had no spells of dizziness and was drinking a lot of water as it meant that I could come off the drip. It is not easy to drink enough water, with an ileostomy we need to drink over 2 litres a day, more if the weather is hot or we are working hard. Today I have not drunk enough I know and I have been feelin giddy so I guess she is right. So back on the water bottle again.
All for now, check out some of the comments I have been receiving, one very interesting one from someone who has suffered from paralysed intestine 3 times in 9 months. I did not want to hear that let me tell you!!! Was hoping for a one off experience. Still I am seeing my gastro consultant on Monday so I will discuss the likelihood of it happening again with him.
Bye

Spoke too soon!

After a few good days I was thinking that life was going real good. On Friday I managed to take my boys to the local 'soft play' centre, Space Island, (I recommend it to anyone on the Island looking for something to do when it is wet), and in the afternoon I took my eldest boy fishing, (he fished I helped). We went to the lifeboat pier and he caught some wrasse and was so happy it made my week. Then Saturday I said to my wife that I had almost forgotten about the bag and everything. So things were looking good. The hernia belt arrived on Friday so I was going to call the stoma team on Monday to arrange for the hole to be marked so I can start wearing the belt and get back to work. Then Sunday evening I get a belly ache. I went to bed for a bit but it got worse so I got up. It got worse again so went back to bed, mostly just to be near my wife in case it got any worse. It did so we called the out of hours doc. We are lucky in that we have our own version of NHS Direct here, we used NHS Direct before for my youngest and they had no clue about how the Island is in the middle of the Christmas holiday and they assumed that cos we live 13 miles from the nearest / only hospital we can get there in 10 minutes or so. Not the case. Trust me.
Anyway, when I went through my history with the person on the phone they said that I needed an ambulance to take me to A & E straight away. The pain is increasing all the time now so I did not argue. So I wait for the ambulance to arrive which it duly did. We called our best friend to see if she could look after the kids for us, (Lu we love you!), she arrived just before the ambulance so Ruth could follow the ambulance to hospital in our car. I get started on gas and air in the ambulance, apart from making me feel drunk it did nothing for the pain. I then get 2 shots of morphine which did dull it a bit but not enough. This is the first time I have been in an ambulance, I wonder if they all rattle that much?
I get to the hospital and get wheeled straight in. This is the fastest I have ever got to see a doctor. Normally you go and get seen by a nurse who decides if you need to see another nurse and then a doc. This time I saw a fantastic nurse and 2 brilliant doctors who poke and prod and give me some pain killers that don't work.
I then end up on the ward that I was on after the operation, 7 weeks ago! As well as the pain my stoma has stopped putting out anything at all. The two things are linked here, no output and pain, one is causing the other I think to myself and it must be a blockage, something I have eaten.
To cut a very long story not very short, the stoma started working sometime on Monday. I thought it had hurt the night before, little did I know how much it was going to hurt when it started to work again. Two years ago I had gall stone problems and had my gall bladder removed. The pain then was not as bad as the pain when the stoma started to work again. I thought this was not possible! It turns out that part of my small bowel had suffered from a kind of paralysis but only part of it, meaning that where the rest was working OK it meant that everything jammed up. This was probably due to a salt imbalance so I now have to be more aware about how much salt I am eating. Most of you are trying to cut down I expect. People with ileostomies have to eat more as we don't absorb enough from our food. I thought I was eating enough but apparently not!
So I got out on Wednesday, another 3 days wasted. Although I did get some more studying for my OU degree done on Tuesday, not really a lot to say about Monday other than I was in so much pain I DO NOT WANT A REPEAT OF THAT UNDER ANY CIRCUMSTANCES!!!
So, back home and noticing every twinge and grumble and hoping that each twinge is just that, not a precursor to anything more.
So, that is it for now, going to empty me bag and go to bed now, it's late and I have had enough.

things ok at the moment

As the title says, things are not too bad at the moment. On the whole the appliances I am using are lasting ok, I get a couple of days out of them which is nice. The worst thing is to have to change the bag when it decides rather than me. If I need to change it because it is leaking you can bet your life the stoma is going to be working at the same time. The biggest problem is the skin under the stoma is still sore and bleeding. I now have some goo that I have to lump on top of the skin to form a barrier between the output and the weeping skin. This is working ok at the moment but I will be glad when it is healed and I won't have to slap it in. It is an alcohol based paste and it does sting a bit! (That's putting it mildly).

So, life is improving now, the hernia belt still not arrived so that is causing worries but hopefully that will be here soon and I can get back to work. I am able to get out and about, walking a lot further than I have been for about 8 months feels so nice. Still intend doing the Walk the Wight next year so better get fit.

That's all for now.

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!

Lots of support out there

I have been wandering round the net looking for help and support so I can get some ideas as to what to expect over the next few months. My brother in law who lives in Adelaide found a crohns & colitis support site in Australia that has been very good, Crohns Disease and Colitis Support Group Australia and from there I found a fantastic ostomy help site, Ostomates.org. A light-hearted site but with a lot of extremely helpful & friendly people who have been through what I am about to go through and so they can explain things from a different perspective to the medical profession. I have got a lot of questions for the nurse when I see her on Friday 27th, just seen the date and that is tomorrow.
One of my questions was about my weight. I have put on a lot of weight due to not doing much and the fact that I have been on steroids for 6 months. One side effect of them is weight gain, basically I can't stop eating. So, eat lots + stay at home = 16kg increase in weight. This is the gain since I was going to the gym last summer, I lost a lot of weight due to the illness in the autumn so I guess I have actually put on around 25kg in all. I need to lose at least 17kg to get back to some kind of healthy weight, not going to get this off before the op though cos I can't get out on my bike or on long walks till after the op, a sort of chicken and the egg dilemma. The question was about how does the stoma react to weight loss.The main problem seems to be that the stoma should not change much but as you get thinner the shape of your stomach changes, pretty obvious really I suppose, so you have to go careful that you don't get leaks.
That is it for now, I will get some more stuff down before my appointment with the nurse I expect, will definitely post the after the appointment.
Mark

Hi

Hi there.
My name is Mark and I have decided to start this blog as a sort of diary of my life as I get through having an ileostomy. I was diagnosed with indeterminate colitis November 2006 after having stomach problems for a while and despite a lot of drugs including a human / mouse antibody drug called infliximab I have not got better. Colitis affects the lower intestine and is one of 2 conditions covered by the term IBD or inflammatory Bowel Disease, not to be confused with IBS or Irritable Bowel Syndrome. It is called indeterminate because it may be Crohns Disease but it is not possible at this point to give a definitive answer. So, as the songs says, 'The drugs don't work' so I need surgery to sort me out. You do not 'recover' from IBD, the best you can hope for is a remission, for some people this lasts for a few months, for others it lasts for the rest of their lives. I am not one of these people unfortunately!
I am going to have an ileostomy, an operation that will give my large intestine a chance to rest for a few months. In order to do this part of my small intestine is taken through a hole, or stoma, in my stomach and faeces are collected in a bag that is emptied when full or when convenient. This is a bit scary at the moment but I must say that hopefully this will give me some kind of life back as I have been stuck pretty much at home since November, the only major excursions being stays in hospital and 2 trips to Southampton University to my Open University tutorials. (I am studying a computer degree, currently studying a course about object oriented programming using Java. I have another blog going, not updated too often at the moment though, Can I learn to program Java?
I am using my 'dead time' to study but lately I have let things slip a bit, it is hard to study or do much at all when you are constantly running to the toilet and each day is the same as the one before and you know that the next day will be the same again! This is why I am glad that the surgery is going to happen. Just need to wait for my name to come to the top of the surgeons pile.
That will do for now, I will be updating this daily, as I wrote above, the idea is that this is going to be my diary of how life changes over the next few months so check back soon to see how things are going.
Bye for now
Mark