A day in my life

what is under my clothes?

2011-03-17T02:30:00.000-07:00

Well hello friends - This is a photo of me exposing what goes on underneath my clothes (without being rude) - I've been asked by friends and family what adaptations and prosthetic appliances I have to wear to go out of the house with. Well here it is: Obviously there's the 2 ostomy bags which are glued to my tummy area. One is a colostomy bag (on my left abdo) and the other is my urostomy bag (on my right abdo). Then there's a modified leg strap on my thigh which holds the valve and pipe/adapter to the top of my leg and stops it twisting. Next you will see a pipe coming down my leg which is a drainage pipe to the lower leg bag. The leg bag is attached with 2 leg straps with a special tubular sock that prevents sweating. If you look closely you will see a scar down the centre line of my abdomen, which goes from 2 inches above my belly button down to the top of my "man's bits". My underwear is specially made and pulls up over the 2 bags. They have pockets in either side to support the bags.

Many ostomates have something else other than stoma or stomas, they often have degenerative diseases or have had cancer or have been disabled from birth etc. In my case I have osteo arthritis of the spine. So if you add the symptoms of the various disabilities together you will find that many ostomates need high levels of care and have mobility issues.

I have shown this because I've been asked to do so, also because I get many people in their ignorance will look at my care giver and ask them stupid questions about me - "Has he had a stroke?" errrrr Hello, I do exist I have ears and a voice and no I've not had a stroke!. But then again I don't quite fancy telling them why I'm in a wheelchair or that I carry all my bodywaste in bags hanging off my tummy, especially if I'm in the middle of Tesco or a cafe.

Clothes can hide a multitude of things including many prosthetics - I'm happy that people don't know what's going on under my clothes - but to those who want to know then here it is! xxx

a crap few days

2011-03-04T09:16:00.000-08:00

Sorry to sound like I'm a constant complainer - I'm not at all really, but what else can you do. I'm simply fed up with being unable to do anything. I was always a very active, outgoing, do anything type of guy. But nowadays, just being sat here using my laptop is a total pain. Headaches are continuing from my neck and shoulder pains. My 2 stomas are both giving me jip. Constant diarrhea, which means the odd burst bag. Poor Mary is totally beside herself with worry about me and now with her being made redundant at the end of March from her part time job she's been loyal to for 7 years, is causing her even more stress. It's bound to take it's toll no doubt, but one can only hope that she is going to get the help and support that she deserves.

The bloke from the coucil surveyors office came around today to do the plans to have the bathroom made into a "wheel - in" wet room, with a sunken floors to drain away the water and more hand rails to be installed, plus a Mira Thermostatic Electric shower with a long rail! - nice, whatever that is. God knows how much this is all going to cost, but he did give us a clue by saying that it won't be cheap. They did say that we will be getting a grant to pay for some of it if not all of it. Let's hope, because that's not all, I have to have a stair lift installed and a ramp to the front of the house to make it all wheelchair accessible. I just hope that I'm strong enough to be able to use it all by the time they eventually have done all the work. I'll keep you posted.

Gym, physio and 2 stomas

2011-02-25T13:14:00.000-08:00

After being in a wheelchair since my last operation and before if I'm to be honest, I've struggled with keeping fit and healthy. Mobility is a big issue when it comes to having two stomas on one body, well it is to me. I think it was something to do with the head on crash I had back in September 2009, which seemed to have caused my bowels to "do one". Plus the osteo arthritis which has been bugging me since I damaged my back in an accident when I fell off a balcony when I was 18.

So I ended up thinking that stagnating in a chair all day is not, and never has been for me. I managed to get referred to the "active living team" which has got me using a gym. A gym? Me in a gym? - This nice chap who represents the active living team showed me round the gym and helped me to do some uppper body exercises and introduced me to some machines, one of which took humbridge at being mauled by me. I had to transfer to another which accepted my delicate touch. The exercise has loosened my neck and arms up a bit, so I'm going to keep it up and once a week, I'm going to go to the gym.

Hartmann's Procedure

2010-07-16T03:37:00.000-07:00

I've just received a letter from my colorectal surgeon today. A very nice man who doesn't talk down to you and indeed makes you feel at ease.

The letter states that a Hartmann's operation is going to be the next best thing to sliced bread. Well it didn't exactly say that but you know what I mean. It means that there is light at the end of the tunnel which may give a better quality of life. I've sent him an email to express my delight (if you could call it that) that something positive is being done and that I hope it will be as soon as possible.

The idea of having two ostomies (stomas) is the only thing that I am thinking about now. Also the thought of going through that awful ordeal of trying to "come around" after the surgery and saying stupid thing to people in HDU while the morphine takes a firm hold of my brain. Including if I remember correctly the crawling spiders up the wall all marching in time. I'm going to be a nuisance patient again I'm sure. Perhaps they could put some duct tape on my mouth to keep me quiet! - I think I will ask for some phots to be took in the operating theatre this time. I quite fancy seeing what my diseased internals look like in situ and what has been causing the pain. Perhaps they could shove the removed mishaped bit of cumberland sausage in a jar of formaldahyde for me so I can display it on the mantle piece. No? .. well it was just a thought.

Question. Although the bag has a different opening.. does the flange look exactly the same as my urostomy flange? I see people with colostomies with belts and extra tape and putting loads of paste and extra bits of this and that on. I'm just hoping its just like I use now. Take the backing tape off and slap the bag on!

Symetry is very important in my small mind. So I think it will help to get the balance of two bags on my belly. I just hope they position it perfectly, if not it will bug me all the time!

How many people do you know who have both a Colostomy and a Urostomy? I'm greedy obviously! xxxxx

A difficult month

2010-07-13T01:54:00.001-07:00

July, so far has proven quite challenging to say the least. Sat here, laptop on knee trying to fool my mind that I'm still capable of doing something. Albeit via the www. I've had some bad news, some interesting but difficult news, and some challenging days.

To get to the nitty gritty, I've received a letter from my dear cousin in Yorkshire informing me that my Aunty Madge had died - A month ago no less, and that she had suffered a rapid cancer and died suddenly. She was cremated a week later. This is my Dear old Aunty Madge who I've known since the day I was born. Now sweep me up with a yard broom, but it would have been nice to have been told about this sad event at the time it happened. Aunty Madge was my Mum's sister. My Mum hasn't spoken to me for nearly 3 years under the "religeous convictions ruling of a Jehovah's Witness", that I'm not worthy. Apparently despite me being severely disabled and ill all the time, I was informed by letter from my Mum in November 2007 that because I was not of the same mind as her and had rejected her offer to become a JW, then I would not be able to have any further conversations with her or any other of the family members who were JWs! - Apparently its a ruling in their JW manual!

I thought blood was supposed to be thicker than water - I thought that family members were supposed to stick together and look out for one another. - I also believed that Christians should welcome other christians with love and open arms - in fact I thought it was supposed to be love to be shown to all human kind. Forgive and forget and all that stuff. What this all boils down to is that I am apparently being punished for outwardly stating that I didnt want to be a JW. The punishment is determined by at what level of rejection you have given. I stated in no uncertain terms that I was quite happy being a Christian in the traditional and normal sense of the definition and I didn't want to join or be reintroduced to a man made sect. But, thanks for asking anyway. Well.... that was the last straw to them. So now I am devil worshipper in their eyes, and as such can no longer be seen to be associating with the family members who are in the "true religion"!

So that means: no contact with my brother, my sister, my mum, my two oldest sons and their families. Sad, but that is the way they want it.......

COLOSTOMY

I was at the hospital, one of my many regular appointments to get an update on how my dead bladder and urostomy are doing after my last op under a GA. All seemed fine. The next day I received a phone call from the hospital asking me to pop in to see my bowel surgeon, the next day. On arriving he said that he wanted to ask me if I thought that a Hartmanns procedure would be the answere to all my bowel troubles, which had triggered off my original problems 5 years previously. I asked him to explain. My bowels are diseased with diverticular disease and are causing great pain and frequent bowel movements to say the least. So his offer to me for a Hartmanns operation would mean that my diseased bowel will be removed and a stoma made on the opposite side of my abdomen to remove my poo into a bag. A CT scan with contrast of the offending area will be done first. Then once he can see how far up the colon the disease is he will then know how much to cut out and where to make the stoma.

A matching pair of stomas - I've searched the internet and can find nothing at all about anyone who has a urostomy AND a colostomy at the same time. I can find ileostomies with urostomies and double barrelled colostomies but nothing on a pair of stomas like I am going to have. I know it will certainly make me less dependant on having to stay near a toilet all the time and it will allow me to eat a bit more than the white fish and potato I endure now. Perhaps it is the answer.

JAPANESE OR CHINESE COMMENTS

I am also receiving a number of comments from followers in an oriental language (Japanese or Chinese perhaps?) - all I can say is thank you, but I can't read it. I hope you can translate some of your comments into English please. Many thanks. - Love and peace to all xxxx

A Holiday might help

2010-05-27T01:11:00.000-07:00

Last week, Mary could see I was feeling low. She had a look around the internet holiday sites and told me that the prices of flights and holidays had took a tumble due to the general public not wanting to risk abooking one because of the volcano. On that note she got me to book a holiday for next Tuesday to Lanzarote... All inclusive... with car hire... my mobility scooter....car parking at Liverpool airport..... and even flights during the daytime all, for a penny less than £1000. You cant really get much better than that!

I'm hoping it might just pick me up a bit! xx

Depression rears its ugly head

2010-05-21T03:11:00.000-07:00

I'm feeling quite good in myself today, despite feeling like it was the end of the world last night. I told Mary that I thought they would all be better off without me as I was too much of a burden on them. It was a selfish thing to say I know. The sunshine today has brought out the better side of me and I'm ready to shake myself up to being abit more likeable, I hope. When I am stuck in with limited mobility and in pain and constant discomfort, I tend to think the worse. I suppose its the depression in me which rears is ugly head. I have to keep telling myself that there are many people out there 10 times worse than myself and they manage to see the brighter side of life. I have 6 lovely children and 2 beautiful grand children who love me and the most caring and wonderful wife who keeps me on my toes. It must be very hard for Mary to see me like this and to have to put up with my moods when I'm feeling down. I just want her to know how much I appreciate what she does for me and for all of us. She is a wonderful person.

Surprise Surprise

2010-05-18T06:17:00.000-07:00

I'll try and get my spelling correct today - still drugged out from being generally anaesthetised, I've sat down to blog for a minute.

The surprise surprise relates to me having come out of hospital and not being much the wiser! I was told that I have a parastomal hernia tho, which might explain some of the pain. It showed up on the CT scan apparently. That's not the only thing I was told. It just happened that the professor (Mr Clarke) came to see me this morning and said that they were going to arrange an MR scan just to add a bit more evidence to the subject before deciding whether to perform a cystomprostatectomy or if they could drug me further up to the hilt with anti spasm medication and more pain relief medication.

You see, even though I have an ileal conduit urostomy - which usually is for people who have had their bladder removed and prostate if you're a bloke, I haven't. My enlarged prostate and dead bladder is still insitu. The trouble is that it is giving me jip. I have spasms and bleeding from my urethra and horrible frequent discharge, which is the same as being incontinent. I am incontinent anyway, but at least it is contained within a urine bag attachment. So to have a double trouble from the same area is a bit like defeating the object.

The other issue is that even tho I am getting more and more disabled and not being able to do anything, in my book means that I should be classed as worse than I was a few months ago, when I could at least walk a few steps. But oh no, the disability people now think that I have improved somewhat, as I've not been keeping them informed as often as I used to about how my condition is. Listen to this: They told me not to keep informing them as often as I was as there was no need to! - So I didn't. Now I have to play catch up and bug them every other day to inform them how much more disabled I am, than I was. Its all a load of crap - the amount of form filling is enough to send anyone mental - I should know, I have the certificate to prove it!

So the latest is - I am now waiting for the MR scan - waiting for the surgeon to chat to me to give me my options and waiting to see if there is any medication which can help me have no pain, no spasms, no bleeding, no infections, but have a good quality of life - a magic bullet! x

Back to Hospital and descisions

2010-05-16T11:41:00.000-07:00

Tomorrow morning at 07:30 I am due to go back in hospital. I should't be in their for more than a couple of days, but all the same, having to undergo a general anaesthetic and be prodded and poked for an hour, waking up with pain down below - bleeding and throbbing. It's not something to look forward to. Having said that, the moment they give me the anti sickness drugs and the start of the injection via a cannular of aneasthetic, I feel like I can challenge them to a game of willpower. I usually say to Christine (my anaesthetist) I bet I can recite a poem or count from ten backwards before you can knock me out! - It usually goes down with a bit of a laugh as my words start to slur uncomprehensively by the time I've got to 6. And for some strange reason I usually tell her (and the other members of the surgery team) all about my family and caravan and holidays in the space of 2 seconds before the lights go out. She's heard it all before, regularly from me. In fact it's the 20th general anaesthetic I've had over recent years. I still get knocked out thinking that there will be no pain and I'll be able to wake straight up and give a bit of chat and go home immediately! - It doesn't happen like that though. The pain is there. The bleeding is there. The nurse holding your hand and extracting half of England out of your throat is still there. The ceiling with flourescant lights wizzing by and a bumpy ride on a bed to the ward is still the same. The porters and nurses exchanging notes of weekend barbecues and Friday nights out on the town seems relentless. Gasping of thirst, sore throat, sticky bleeding genitals, tight white stockings, plastic bags of clear fluids swaying over my head on a metal hook, a night bag incorrectly connected to my twisted day bag sucking the fluids away from my abdomen...

Oh so much to look forward to, for tomorrow morning at 07:30!

The last year

2010-05-14T01:20:00.001-07:00

Over the last year I've had ups and downs, but mostly downs I'm afraid - The whole thing was going quite well for a while as I've previously posted. I still had a few problems with my Urostomy and accomodating different ways of doing stuff, but it all came to an abrupt halt when I had a crash in the works van!

September 2nd 2009 at 09:30 travelling allong a 4 lane road when a woman pulled out across the first lane and then across the second lane, which I was driving down at 35 MPH. Nothing had prepared me for the impact. I hit the side of her car with the front of my Renault Trafic van - her car was ripped in half, air bags went off, smoked came up. My first reaction was to keep still and don't move or say anything. I couldn't anyway, as the seat belt had pulled forcefully across my stoma and my neck and shoulders were painful. 6 ambulances attended and a police car. The road was closed for a good couple of hours while we were being attended to. Rachael (my daughter, 24) was with me in the van. She suffered similar neck and back injuries. We were all taken to the Royal Bolton Hospital by ambulance - promptly inspected and I was told that they had no experience of an ileal conduit urostomy, so I had to get it checked out by my own surgeon and / or GP! Typical really! - one taxi ride later and we were home.

6 weeks of traction for neck injuries later...... mobility has failed almost totally as far as walking is concerned. Work has been retired from on the grounds of ill health. To cut a long story short, things are a bit grim at the moment. I've had nothing but constant infections in my urostomy since then and pain in my abdomen, kidneys, neck, shoulders ever since. Needless to say the woman in question who's car I neatly sliced in half has admitted full liability and is was fully insured (luckily) which made the whole process of claiming for injuries and loss of work a breeze. That's no compensation for being in constant pain and having no mobility.

My Docs have said that I can't work again, so here I am with loads if not too much time on my hands to natter or chat via the web. Its a positive thing to do and I hope my rantings and written moaning about this and that don't put any of my old friends off reading this - my aim is to keep a reasonable update going and add some new friends to the blog.

There is loads to tell you about whats been going on in my family, the garden, my health, my mobility scooter!, and even my mind!!, I have loads of pics to put up soon. If you are in a hurry to do a catch up sooner, then add me on facebook - just type in Phil Esgate - I'm the only one in the world..... does that mean I'm unique? - I need to do a bit of rejigging my blog presentation and get it looking a bit more attractive - any ideas please?

We are off in the caravan today to a quiet (hopefully) caravan site where I can relax prior to my operation on Monday morning (admission time 07:30) - please forgive me for being away my blogging friends - I will endeavour to be loyal and reasonably up to date.... xxx

Phil update

2010-05-13T09:27:00.000-07:00

Hello everyone - Its been a while since I blogged, can't promise a daily update as I'm not currently in the mood or in the best of health to do it, or much at all these days. So sorry for being a bit of a numpty of late. love to you all x

Baby Sitting

2009-02-13T03:07:00.001-08:00

As I have given Rachael a part time job, this means that we have a surplus little fella who needs looking after - I drew the relevant straw today. So I'm Baby sitting Kaiyan this morning.

Breakfast time = Weetabix and a towel wrapped round him.

He can brush his own hair now too!

He can even help me with my laptop work!

Genealogy

2009-02-09T11:27:00.000-08:00

After spending most of the afternoon in the bathroom today, I thought I would put my attention back in the direction of my family tree. I have been working on it since 1984 with the help of some of my cousins around the country. As you can imagine with a family name of Esgate you would have thought that there wouldn't be too many of us, and you would be right. However over the centuries our family has flourished, from an original name of Eastgate, through Estgate, to Esgate as it is today. I have a huge tree which goes back in detail to the late 16th Century (1595) and we believe it has it's origins in Norman Britain.

The family homeplace was Feltwell in Norfolk, and then at the times of industrialisation our branch of the family moved on to Yorkshire - Queensbury nr Bradford which is where my Dad was born. I was always brought up to think that my family were thoroughbred Yorkshire, but as time has proven, with much digging, Norfolk was our home. Coincidentally I was born not too far from that area in East Anglia, Alford in Lincolnshire to be precise. My Mum and Dad always referred to me as a "yellow belly", but I always considered myself as Yorkshire. Little did I know that years later I really was an East Anglican (is there such a thing?).

I love history and specifically how people lived through all those terrible years of struggle. They had loads of children though, and some lived to a ripe old age. - To all Eastgates, Estgates and Esgates worldwide who came from Feltwell - Salute ..... Phil x

Hopital on 24th

2009-02-07T10:03:00.000-08:00

I received confirmation today that I'm to go back for a consultation with the Gastroenterology Specialist (Mr Watson) on the 24th Feb, in a couple of weeks time, Although they said that they may call me in earlier if they can. It was only 2 weeks ago I was in for my last op. I feel real compassion and empathy with Amy as she is suffering a terrible amount with her kidneys and constant infections (which are not treatable). As she says, over the years she and I both have become resistant to Anti biotics which means of course that anyone in our situation are prone to infection all the time. I hate it that there is a constant pain somewhere inside which is caused by those infections and the bleeding from it makes it appear quite dramatic at times. No doubt this time I will find out if my descending colon and sigmoid colon is able to be saved from the knife. - I don't think I have much bowel left anyway after some of it was used to make my conduit. Only joking I'm sure there is plenty left for all to take a bit when they get stuck in! - I've just been watching ostomy related subjects on youtube would you believe. If you type in Urostomy - you get this one gentleman telling you how he goes about his bag changing ritual. The other gentleman says he feels that it is about time someone invented a new system for urine collection as the one we use now is the same principle as when it was first done in the 1920s. I also saw a video on there of a poor chap changing his colostomy bag - and to be honest I really felt for him, as the procedure he uses seems to be a really old fashioned one, with pastes and rings, he uses a mirror to see under his belly and then struggles to fit his bag. Poor man.... Is that what I have to look forward to if I have to have a Colostomy too? ..... Phil x

My Best Friends

2009-02-06T09:04:00.000-08:00

I've only ever had a few best friends in my whole life. I find it hard to trust people as I have had a few nasty experiences with pretentious individuals who were only fine weather friends. When things got difficult, whether it be my health or my status, they dumped me. They were not true friends and I was hurt by them.

But the above two rascals are my best buddies. They have seen me through thick and thin and have been an amazing support to me and my family while I've been ill.

The rascal on the left is Steve - I'm the one in the rascal middle - and the rascal on on the right is Jason.
Steve lives at number 10, while we are at number 7 in our Drive - his family and my family are best friends too. Our children go to school together, in fact Gemma and Georgia have always been in the same class. (Our back garden backs on to the school playing field, so not far to go to school.)

Jason and his family live the other side of Wigan and we work together. Jason's wife is one of my wife's best friends and their children are absolutely beautiful and best friends with our children too. So we have our own little group and we have all been loyal to each other for years.

In fact Mary is off out this evening, with Jason and Vicky, to a party while I baby sit the youngest two, and Gemma and Jamie are currently over the road at Steven and Julie's house. I'm just not up to going out these days. It's all a bit much discussing how I am and then watching while all the others "have a few drinks" ( I can't have any alcohol), and then there's the food. I just don't do eating.... That's why I love all my friends mentioned above, because they take me for what I am, there is no pressure on me to conform or to perform. In fact both of their families seem to have adopted us as family members - which is like....... amazing!

These are my best friends - Phil x

Not much today

2009-02-05T09:33:00.000-08:00

Sorry nothing really happened today - I bought a load of equipment from USA and some more from UK. But other than that not much else. The house is full of children and it's quite noisey. I don't want anything to eat really. I'm supposed to be working tomorrow morning, nothing too demanding and again Saturday lunch time. I just feel constantly knackered! - Phil x

New Friends (Urostomy)

2009-02-04T08:31:00.000-08:00

Yesterday, while routing through facebook I came across two other people with a (an) Urostomy - so I thought I would contact them both and see if they had any notes to share and advice, particularly as they are both "long timers" but still relatively young (compared to me anyway). One is Helen from Perth Australia - and the other is Michelle from Vancouver BC. I have had a reply from Helen and she has joined us on Facebook via Saz's Ostomy lounge. Michelle is yet to reply - so I'm hopeful we can get a few more together to blog share..... Get well soon Amy - Phil x

Cars

2009-02-03T09:37:00.001-08:00

I have a Land Rover Discovery which has been really useful in the snow of late. Mary drives it most of the time. She is a very good driver and nothing get's in her way (literally). But we are thinking that the old bus is ready for a replacement as it has done a lot of miles and we've had it for over 5 years now. I bought it on the spot when we were away in the caravan and the car we had was useless at towing. We only had that one for a few weeks (Mercedes E Class) as I had bought it when our Mitsubishi shogun (Pajero for you outside of UK) was stolen. Some nightmare weekend that was. 5 and half years ago, on one weekend, we had just moved into our new house after moving home from Ireland (after 10 years) - that same weekend my dad died and my car was stolen. So while waiting for the insurance to pay up I went out and bought the Merc. Nice car but not a 4x4. So a few weeks later we were away on holiday and I saw this Land Rover Discovery, just begging to be bought. So I did. Now 5 years later I'm thinking all these new cars make my old Discovery look very dated.

A Nissan Pathfinder Platinum?
A Land Rover Discovery 3 HSE?
A Toyota Land Cruiser?
A Volvo XC90?

Any other suggestions would be greatfully considered - It must be automatic - 7 seats - leather - 4 wheel drive - be able to tow a twin axle caravan. And look really good too..... Phil x

Bad day

2009-02-02T11:51:00.000-08:00

I've been thinking about Amy going in for her op / investigation / tests - De jas vous (or however it's spelt) me last Friday... what a typical thing for someone like us to have to suffer and endure the inadequacies of our NHS when they know exactly what you are going in for then tell you something that is physically impossible just to make you feel even more degraded. Rant Rant Rant....
I wish you a speedy recovery Amy - I do empathise..... I'm still bleeding from mine 10 days ago and wish it would stop.

Today wasn't my best day either, in fact it was quite a bad one... Mary insisted that I went to the Docs first thing today as I have been complaining about these abdominal pains in my bowels and bleeding from that department too.... She insisted on coming with me... she is too good. The weather was quite bad with a few inches of snow. I felt cold and shaky. It's a good job that we have a Land Rover Discovery as we live on hills. It's also a good job Mary drives it very well too.
The Doc said it was urgent that I went to hospital and he was going to send me to A and E in the hospital where I had my big op done 17 months ago, as my notes (volume) were there. I said I didn't want to go via A and E as the whole process would be too much of a problem with all the explaining and getting the nurses and junior Doctors to understand what a Urostomy was. He said he was going to arrange for me to be admitted properly and wihin a few days, as I didn't want to go through A and E. - I hate having to go into hospital as I've had such a lot of it over the last few years. 16 operations under a general anaesthetic is more than enough for most people. I'm sure my brain is fuddled with all that stuff.. - So now I'm just waiting for a call ...

Love to all .... especially to Amy after today's ordeal..

Phil x

Today I will be doing....

2009-02-01T07:33:00.000-08:00

Hello again and welcome to Sunday in Standish, near Wigan. Ok you might say what do I know about Wigan? Wigan Pier? The Rugby Team? Wigan Athletic? - Well don't work your brains too hard trying to find something Wigan is famous for. First of all let's get the location correct. Wigan is situated in Lancashire according to most peoples' understading - but according to the Post Office our address is supposed to be Greater Manchester. Who thought that one up eh? - Wigan is famous for ........ it's coal mining history. The canal which goes through it to transport coal one way and cloth for the mills the other and connects Leeds to Liverpool. Due to there being hills in Wigan, then there has to be Locks on the canal. Wigan used to be and probably still is the home of Northern Soul. And of cours the Company I am a director of is based there and I live here.

Today, Mary is cleaning up the house and I've managed to get hold of a loft ladder assembly from a friend who doesn't need it any more (recycling). I took down the staircase to the 2nd floor and have now managed to get it resembling a 4 bedroom semi again. However one bedroom is still full of clutter and should really be converted back into the upstairs bathroom. Our house has a kitchen, dining room, living room, hallways, downstairs bathroom and shower, utility room. Staircase, upstairs hallway, 4 beedrooms, then another floor (now shut off - thank god) which has another bedroom / office and a storage area. The garden is a typical 60foot long with a drive which goes from the road to the back of the back garden. The front garden is mostly laid out with errrr.... weeds and a few blades of grass and the odd flower trying to get through.

I have been out to collect the loft ladders but have only managed to put them into the hallway ready for someone to help me fitting them.

I have also took Mary's laptop to bits and resoldered some components which had come loose on the motherboard - It's what I used to do for 20 years before getting my own business in a completely different field.

That's me for today - a bath at about 8:30 and bed for 10...

Here's one to cheer you all up...

2009-01-31T12:15:00.000-08:00

This is a video I made today of me and my family - enjoy..

Final Fantasy

2009-01-31T09:59:00.000-08:00

Why?

2009-01-31T08:55:00.001-08:00

To all my friends -

Please watch this Youtube video - I feel so helpless.

http://uk.youtube.com/watch?v=jwO34V0-ye8&feature=channel

How can we stop this from happening?

Phil

New Awards to my special friends

2009-01-31T02:41:00.000-08:00

To Amy - with best wishes and real desire to see you feeling well. My friend and fellow sufferer.
T0 Tracey - for being a fantastic blogger and support to Amy and family. In fact to all of us.
To Odette - for being sympathetic, kind and considerate.
To Fi - for her complete friendship and support to Kirst, helpful and concerned.
To Kirst - for being an excellent all round, loyal friend and empathetic in nature. I wish you well.
Hugs to you all - Phil xxxxx (one each)

Awards

2009-01-31T02:23:00.000-08:00

I'm trying to receive my lovely awards from my very thoughtful friends - Thank you to Tracey and to Kirst. I've tried copying and pasting. I've tried copying links and pasting links. I will persevere until it shows up. HHmmm now which button do I press........ Phil xx

Kaiyan

2009-01-30T08:44:00.000-08:00

My 2nd oldest is called Rachael and she has a wonderful little fella (my grandson) he is about 20 months old. He makes us a laugh and smile particularly when he's trying to do funny little walks and pulling faces. He points. He giggles, He jabbers on in his own little language. He watches while his 6 year old Uncle Jamie and 8 year old Aunty Gemma are fighting and arguing. I hope he doesn't learn any bad habits
Gem and Jamie can be good too believe it or not, especially when they want something! - Love you Kai .... x

Stop Shouting

2009-01-27T11:14:00.000-08:00

"Stop shouting" must be the most used words in our house. Sometimes with the addition of "please" or "I beg you to" or "If I give you a 50p" or "Father Christmas will be cross, if you don't" (substitute Tooth fairy, Santa, and even God for Father Christmas). I seem to be forever saying this to the children. They have a terrible habit of shouting everything, to everybody and everything. I usually have a knack with the "calm breeds calm" idea, but today nothing works. Not even shouting back at them to stop shouting! - You would think after 6 kids I would be able to write a best seller on the subject but alas no. - All ideas and help in this matter will be greatfully acknowledged and implemented.

Urostomies - Where are you?

2009-01-26T09:46:00.000-08:00

Come on wonderful people with a Urostomy, where are you? - I know there must be more out there but via this blog I have only met 2 others. And lovely girls they are too. They are long suffering and kind individuals with such a lot to give to help others with the same condition.

It's quite simple - if you have an ileal conduit urostomy or similar (not a colostomy or ileostomy) and have to go through the same rigmarole that we do, then please comment on this blog - or Amy's or Kirst's blog - or indeed please produce a blog of your own. We want to hear from you and share in your experiences. We can all learn from each other. The level of support out there for us is seemingly minimal. We receive technical help from Stoma nurses and Uro clinics and the like - but nothing can prepare you for the mental issues raised by having a Urostomy, let alone the practical side of overcoming simple everyday tasks that are taken for granted.

Please come forward and let yourself be known. Don't be shy. It will do you good to express your ups and downs and get to know other Urostomates.

We look forward to hearing from you.... Phil

Tips and Tricks for Urostomates

2009-01-25T06:43:00.000-08:00

First of all you have to be a Urostomate to benefit from these tips - there's no getting round it by pretending or even by being a Colostomate or an Ileostomate - Just a urostomate......
We are special and unique due to our diversion being a golden liquid re route - no pooh allowed here!
So here's a few of my tips and tricks and anyone of my friends who has their own little procedures which might help please feel free to add them to the list.

Tip 1: - When changing my bag, I do it just as the bath has filled up - Prepare new bag and accessories ready for replacement after bath - remove old bag and place in nicely scented orange nappy sack provided by the nice people at Fittleworth. - Get in bath

Tip 2: - Allow the nice warm bath water to melt the adhesive away - then scratch like mad as the stoma surrounding area itches like mental. Then shave the surrounding area with a Gillette fusion (nothing but the best) - Don't tell me you don't have to shave as I don't believe you!

Tip 3: - Get out of bath and have someone watch your stoma for you as, if it does decide to squirt (which it will) you will have absolutley no idea at all that it has just power washed the side of the bath and the bathroom floor. Your little observer will be able to advise you where to mop up. My helper shouts: "dad your stoma's weeing"

Tip 3: - Dry area very well as no amount of moisture will allow a bag to stick! - Don't sweat. To prevent sweating open the bathroom door fully wide, open all the windows and allow a flow of air through the bathroom to get rid of the steam... This will have the added benefit of allowing your family and neighbours have a free freak show without paying.

Tip 4:- warm up the bag adhesive, as opening the windows and doors would have made it go too hard to stick (a cold bag don't stick). Place your bag under your armpit to warm it up. Spray some cavilon on the bald patch around stoma. Allow to dry again.

Tip 5:- Use the small non woven swabs you obtain from supplier to wipe the condensation from your glasses so when you put them on you can see what the hell you are doing. Put glasses on. Peel sticker from back of adhesive area on bag. Wipe dribbles from stoma area again. WIpe glasses again. Close window to stop getting too cold. Slap bag on at a slight angle and Hold - Hold - Hold.

Tip 6:- Try and put your undies on without creasing the flange area of the bag - balance on one leg and ask your helper to pull your undies up as bending is impossible with a Urostomy.

Tip 7:- Check all around flange by constantly circling your fingers over the sticky area to feel if there are any creases (there will be) - Try not to look too conspicuous while doing this - so a loose dressing gown is advisable as you can slip your hand in and be just pretending to be pulling your undies up. Any crease will need 2 hands to iron out. Slip 2 hands into your dressing gown and ask your helper to hold your dressing gown closed for you while you spread the creases out. Your helper will understand as they will have received the full training course in doing this from Her Majesty's Direct.Gov website and alrady submitted the Risk assessment associated with this procedure along with the method statement.

Tip 8: - Chuck everything back in the box ready for the next night - making sure the scissors don't pierce any unused bags in the box. - restock the box if necessary from your backup supply in the cupboard. If the cupboard supply is low, restock it from the plain cardboard box you keep the backup of the backup supply in. Note if you require to reorder from suppliers.

Tip 9: - Don't sit down - for about an hour - until the adhesive has took hold - If you do sit down and spring a leak, then repeat steps 1 - 8 as necessary.

Tip 10: - Going to bed. Remember to take your supplies for the night up with you. As I can guarantee that you will get to the top of the stairs and realise you have forgotten your adapter or night bag or laptop or phone or something. Stick the end of the night bag tube in your mouth to lubricate it - then push like **** to get the adapter to stay on.

Tip 11:- Feed night bag tube up your undies leg, through any holes you've got or had to make to allow access and clip the tube adapter to your daybag. Make sure there's enough wee in your bag to not cause an air lock. Don't forget to turn it on. Listen out for the loud suction noise ( which sounds like someone slurping tea) to ensure it is draining OK. Untwist all pipes and strap to leg as necessary making sure there are no kinks or air locks. Place night bag in a tupperware cereal box at the side of your bed.

Tip 12: - Adjust rotation of tube in adapter to stop needle access point from digging in your leg when you turn over. - Straighten everything out again and lie down. - wait for 15 minutes to make sure there are no blockages.

Go to sleep...

Optional Tip 13: - You've forgotten something from downstairs or your supper. - Get out of bed and drag your night bag along with you - Try and put your dressing gown on with one hand - have a go at tying your night bag tube to your dressing gown chord in a second knot. Make sure there is no one around who might think you've got a catheter. Run the risk of causing an air lock in the drain system by having your night bag too high. Get your supper, while constantly rearranging night bag which has come undone and fallen on the floor. Mind not to step on it or catch it on the edge of a kitchen unit.
Stumble back up stairs and go to bed.

Tip 14:- If you've managed to sleep at all with all the discomfort an pain and stuff - get up and sit on the side of the bed - Use a willing helper to sit you up if required. Grab a length of toilet tissue and turn the tap off on the bag valve. Undo the clip to the adapter and catch all the slime from the valve tap. Shake until dry. Carry full night bag and everything else down to bathroom.

Tip 15:- Try and aim full night bag into toilet at the same time as holding it in one hand and pushing the open valve with the other between finger and thumb. When empty, try and pull the adapter off with a twisting motion. Seek help if necessary. Dispose of the night bag into the same nappy sack as yesterday's day bag was put in. Wash the adapter by flowing water through each end and put somewhere safe for tomorrow night. Wash your hands.

Tip 16: - Get dressed when you feel up to it asking for assistance with trousers, socks, shoes and anything which requires bending. Wear anything which doesn't allow profile photographs to be candidly taken of a variably lumpy abdomen. You may get mistaken for having a colostomy! or for having hidden an illegal immigrant down your pants.

Tip 17:- Do the Urostomy Twitch - You put your right hand on your abdomen - inside or on the outside of your pants as preferred and assess the fullness of your bag. At the same time try and avoid uneccessary attention from perverts or children. Do this every few minutes to keep you active during the day. If required (ie bag is half full) perform the emptying ritual at the first available location. This doesn't necessarily have to be a toilet. Just somewhere where you won't splash your shoes.

Tip 18: - Try and be normal for the rest of the day as people don't think that there's anything wrong with you.

Tip 19:- Try and avoid falling over or getting knocked down by a bus, as it will be hard to explain to a nurse who is trying to catheterise you that the catheter is hitting a brick wall and they have just ruptured your insides.

Tip 20:- Have a large tattoo put on your bottom and repated on your abdomen with an arrow to your stoma saying "This is not a Colostomy - please read instruction manual before proceeding"

Recovery

2009-01-24T12:00:00.000-08:00

Today is supposed to be a day of recovery - but as usual I feel worse today than yesterday, but I hope I will feel better tomorrow than today - I feel for Amy and Kirst and their problems and I think how lucky I am to have friends to support me in these painful times. Hospital staff and nurses don't know what we are going through - I think my surgeon is probably the only other person I know who may be able to understand what I mean when I tell him my symptoms. But to be honest, I'm sure you have to experience it to really understand what is happening.... Phil x

Bleeding and sore

2009-01-23T12:00:00.000-08:00

Just a quick update - I have spent the day in hospital - A general anaesthetic, a poke inside with a camera (they couldn't see anything), biopsies taken, been booked in for MRI scan to see if there is any masses of anything in my abdomen. have been referred back to bowel surgeon to see if I need to have any operation to stop the constant big "D" and colon pains. - Will just have to wait and see what is decided after all the test results. But at the moment I'm sore and bleeding and feel like going back to sleep again. Tramadol and paracetamol for pain relief - Phil x x x x x (one x for all my blog watchers)

Today and tomorrow

2009-01-22T13:25:00.000-08:00

Today - work
This is has been a funny old day today - I can't really be particularly phylosphical about anything today or indeed anything tomorrow, as today was just a busy day in the office with a trip to Preston, Darwin, Bury and Wigan. All quite local really. And work was just work.

Tomorrow - Hospital
Although my mind was never far off what's happening tomorrow. - Early doors to Hope Hospital in Manchester. Waiting around for someone to realise that I'm actually there. Then being wheeled like an old shopping trolley through pale sanitised corridors to a room emblazened with signs saying, Operating Theatre, Xrays, Do not Enter, Wash your hands please, to be welcomed by a person who seems as young as one of my children. Especially someone who doesn't know what a Urostomy is. And this person is supposed to be assisting in operating on me with the main subject being Urostomy. Hopefully the op. will be short and sweet and they will come like a flock of sheep to visit me when I'm sill trying to wake up from the anaesthietic and try and tell me that it all went very well and there is nothing to worry about. But worry I do, as even though I know this op is routine, there is still a chance they will find something that needs attention. Well, there's the 2 seperate pains in my abdomen to start off with, then the pain in my left kidney. Hmmmmm. Should I tell them about these pains - or let them find out for themselves? They will ask me of course if there's anything that feels not quite right. So I might just mention these things just to get it out of the way. I'm just a bit concerned that they might say that I have to stay in, or at least have to come back next week for "further tests". I've got a full diary for next week. I don't think I can spare the time for getting well. Everyone is telling me to tell them everything and put up with the consequences, as my health comes first. At the moment I 'm thinking the mortgage comes first. Needs must and all that.
We'll see what happens tomorrow eh? ....

Busy Day

2009-01-20T13:33:00.001-08:00

It was a busy day today - Although it was mostly driving and surveying - I went to 3 hotels in the lakes and a health centre in Lancashire to survey their Ventilation and extraction systems. Not too demanding and as I didn't have to do any physical grafting, I remained on my feet. I did bang my head though on a very low door frame which gave me a headache for the rest of the day. I've not fallen over today either, which is quite a surprise....

Tomorrow looks as if it's going to be a bit harder though as I am going to have to perform physical duties. I hope I can keep this pace up as I'm not really sure if I can cope with all the extra work we are getting in now. This is supposed to be a recession. What recession? I feel really lucky to have a job as I'm sure if it wasn't for Jason and our company that I would almost certainly be unemployable. I feel quite incapable and feeble when I watch Jas working and how hard he grafts. I just can't keep up with him these days. I hope he doesn't feel like he's carrying me. If he does, then I hope he will tell me. He's just too nice a person to say anything.

I hope a good night's sleep will see me refreshed in the morning. - Phil x

Family problems - Please read if you have time.

2009-01-19T12:45:00.000-08:00

Here's a picture of my two lovely cousins who have been really supportive of me through thick and thin (Vera and Angela) - Love to you both xx -

I have a very odd family - what a thing to say - I don't mean my children or wife or cousins - I mean my syblings and mum. OK so here's why.

My Dad died 5 years ago and I loved him very much - I just wish I'd told him that sooner that's all.
He used to want to chat to me about family and events - like his past and during the war and all the experiences he had - but my Mum never wanted him to say anything - she said it was too upsetting. Don't get me wrong I love my Mum and My Sis and Bro. But events over the last 20 years have dictated how they are with me now. - 20 years ago I was divorced and my first wife decided to take another track in life which involved a different husband and the following of a certain religion which involves knocking on peoples doors and talking about the Watchtower. My Mum became the same as did my brother and sister and their families - to cut a long story short so did my two boys from my first marriage. Because I told them in no uncertain terms that I did not want to become a JW like them and that I was quite happy as a normal Christian (I was christened as Methodist), but I held no grudge against them at all for taking that route. They all were (and even now more so) under the influence of their organisation which dictates that they cannot speak to me "prolonged conversations" my Mum said in a letter to me recently. - I feel cut off from them from an immediate family point of view and I would simply love to know how they all are and how they are all getting on in life. I'm not really bothered if they know how ill I am or not (on a day to day basis) - They know what I have had done and for a few hours they did visit me in hospital.
It is their choice (or should I say their organisation's choice) and I'm not really bothered about their religeous beliefs - They could all be budhists or Muslims or whatever, it doesn't matter to me one iota. Just that, common decency and family values (as I understand it as a Christian) means that we should all love one another unconditionally. So not only will they not see or speak to me - but they also don't want to speak or see their Grandchildren / Nephews / Nieces etc. - How odd is that? My Mum is 86 and I used to speak to her all the time until I received the official "warning off" letter.

I do have cousins - who I love very much and we talk all the time - Vera and Angela - they sympathise with me on this story as they are and no doubt were similarly affected by my family's actions at that time - Vera is my Dad's Sister's daughter and she keeps me laughing and phones me up every week to check if we are all OK - She's lovely and her husband Ron too. And Angela is my Dad's brothers daughter, she is about the same age as me and we get on really well and keep in touch especially about genealogical stuff.

I just wish my Mum and my sister and my brother and my 2 oldest sons would all just think about how unchristian like it is to ignore a family member who doesn't want any involvement in their sect. - I have tried over and over and over through fair means and foul just to get some communication going with them all but to no avail - The words head and brick wall spring to mind..

Once again - my dear family - I love you all but I wish you'd just bother to hear me..... and a special thank you and much love to Vera and Ange xxx ... Phil

My health and medication (again - ish)

2009-01-19T10:30:00.000-08:00

I just want to get this all out of the way now as it sort of completes the whole picture.
I have an ileal conduit urostomy - as you know.
I have a shortened small bowel for that reason.
I have diverticular disease.
I suffer with diahorea every day.
I have spinal arthritis and arthritis in my hips and leg joints.
I have anxiety and depression.
I suffer with allergies - asthma - ecszema
I walk with a limp.
I get very tired easily.
I suffer dizzyness and can easily fall over for no reason at all.
My constant pain / discomfort is mostly in my colon and lower abdomen (pubic bone area)

Medication: well I was on 37 - 42 tablets per day - but I decided that they were doing more harm than good to be honest. So I have got it down to 12ish per day now.
I take a tablet to make me sleep for 8 hours.
I take a tablet to keep me awake when I have eventually woken up.
I take a tablet to help with my toilet needs,
I take tablets to control pain.
I should take (but don't) tablets to control abdominal spasms. (Make me very dizzy)
I should take (but don't) tablets to do something to my prostate (God knows what) - (make me sick)
I take ventolin for asthma.
I have creams for exzcema -
Lotions and potions for this and that.
Plus all my Urostomy supplies which are delivered in a plain brown box every month on the 4th - What on earth do you do with your Urostomy supply box?. Mine has had 16 different homes in the last 16 months - I still can't find a decent place for it! -
I have also got tablets to counteract the side effects of other tablets
I've also got tablets to supplement the effects of tablets that may not work sufficently well.
Then of course there's the regular supply of ciprafloxacine - which don't work at all.

I'm surprised I've got any kidneys and liver left - I'm also surprised that I've got any lining left on my stomach. And I'm not at all surprised that I've got serious bowel issues, after taiking that lot.

Thanks for listening - Phil x

What is happening to me?

2009-01-18T12:46:00.000-08:00

A few weeks ago I sarted with this stinging in my lower abdomen where the sorry mess of my bladder used to be and what's left of my prostate still remains. Lately and particularly the last few days, it's got worse. When I first started feelin it, I thought mmmmm infection! - Phone hospital and arrange to be poked and prodded - scraped and biopsied - pain refiefed and scanned - you know the usual stuff... Also to get some antibiotics to kill any possible infection. The only antibiotic I can take is Ciprofluxacine 500mgs, as I am totally resistant to anything else. I did the full course, which produced zero relief from the symptom of having what feels like a burning tennis ball in my abdomen. The hospital phoned me last week to tell me to come in for preop. whenever I want. I was in London when they called, so I arranged it for the next day when I would be in Manchester. The male staff nurse doing the preop said... Ok so you're coming in for surgery, what operations have you had in the past?. I said I have an Ileal conduit urostomy. He said oh is that a colostomy? I replied no. He then asked me how to spell it.......... mmm and then wrote down "has an ileostomy" .... I told him that if he didn't change that to Ileal conduit urostomy then he will have a claim for medical negligence on his hands when they try to put a catheter up me and find that there is a dead end there. Wake up nurses and aquaint yourself with the operations which are performed in your hospital - and the difference between colostomy, ileostomy and urostomy. They are very definately not one and the same. "Oh we don't see too many of those" was the comment - which didn't inspire much confidence. - He obviously hadn't seen any at all - or even heard of it which was a bit worrying to say the least. He then asked me if I had produced a urine sample? To which I replied, and how do you suggest I do that? - By this time I was a bit frustrated - nothing had changed since my last op a few months ago, including my history of ops I had up to date - so why the hell didn't he simply print it off from the computer at his fingertips er? or ask the question - Have you had any further procedures since you were last here? - done and dusted! - I'm sure I could save the NHS loads of money in time wasting..... Anyway I'm going in on Friday for a poke and a prod, a scrape and a biopsy, a scan and an xray or whatever else they feel like doing. I could tell them what to do - stick a fire extinguisher up my arse and put this fire out in my abdomen. Then apply ice cubes as necessary - Now the burning tennis ball feels like a melon - ok a grapefruit,. I dunno - it feels like something is going on in there that shouldn't - I hope they poke their instruments up the right hole - God only knows if they know what they are doing..... Phil x

Snow is looming

2009-01-18T03:04:00.000-08:00

Sunday morning - I had a bit of a lie in this morning - about 15 mins. Gemma has got a sore throat and was very hot in the night - so we had her in with us to keep an eye on her. That's not the ideal situation when a king size bed just about accomodates 2 sprawling adults at the best of times. The weather report states that there is a strong possibility of snow showers over the next few days particularly here in the north. We are popping over to our friend's house in Blackpool soon for dinner and an adult chat about stuff...... (yes just stuff) - Kaiyan (my grandson - 18 months) and Rachael stayed over last night. Kai is a little monkey now, into everything, but I love him to bits too. He makes me laugh - just what I need. I have just looked at my Diary for this week - Wigan and St Helens Monday - Cumbria lakes Tuesday - I daren't look at the rest, I'll just take it as it comes, as snow is looming..

My Work

2009-01-17T04:21:00.000-08:00

I have a job - not that I do much - although some say I do too much - My Gp can't believe I hold down a full time job, same goes for my surgeon. I often can't believe it myself as many times I feel totally incapable. I have great support from my colleagues, particularly my fellow director and best friend Jason Jolley. He knows when I've done enough or too much and then steps in to lighten the load. Theres no way in a million years that I could do this or any other job without his support and superb humour. My job is being a director of a national company called Gleaming Group Commercial Ltd. (check out the website) http://www.gleamingcommercials.co.uk - you can see there the stupid things I get up to and the kind of work we undertake. Fortunately these days I tend to do more site surveys and admin work rather than actual grafting. But I don't expect any of our staff to do anything I haven't proven can be done by doing it myself - So no excuses then! - Effectively all we do is clean. But the standards are high and the cleaning is specialised. I spend more time with a keyboard than I do with a customer, so I am happy with my work. I can often be found on the roof of a tower block in Canary Warf (London Docklands) or in the basement of a massive hotel in Liverpool. Venilation shafts you can stand up in are my speciality. I have no fear of heights and as I'm quite short I can get into small spaces (I don't get clostrophobic either) -

Thats enough of that now, as I don't want to bore anyone - but it is what I do ....

Diet and Bowels disease

2009-01-17T01:52:00.000-08:00

On top of everything else - moan moan moan - I have a bowel condition too. I suffer from diverticular disease of the colon, which causes IBS and regular bowel infections. Anything else??? - typical really that I can't just have one thing wrong with me eh? - It was about 5 years ago I started to bleed heavily from my rectum and had amazingly frequent diaorhea (however it's spelt) - I then had 3 operations on 4 burst varicose veins which were 3 inches long inside my rectum. (Hope your not having your breakfast while reading this) - I spent a month in Wigan hospital. This has left me with a rectum of only 1 cm opening and MRSA - I'm lucky I can just manage without having to have had a colostomy too. That too is constantly being checked. So I have to watch what I eat.
I can't eat:
Meat
Skin on fruit
Peas or Beans (pulses)
Nuts
Eggs
Onions

That don't seem like a lot but many foods have these things as ingredients in them. So, my diet is based on what I can eat:
cereals
Fish
Bread
Some veg
Salad
Yoghurts
Sludgey foods with no hard bits
Potatoes
Rice
Pasta
Cous cous etc
It's quite a battle to get it right too, as I am supposed to eat little and often (6 small meals a day) - the total I can eat in one sitting is a small (side plate) amount of food. I love ginger biscuits and tea.... As soon as I have eaten usually within 10 minutes I have to go to the toilet, without fail. I can't hold it either as it is probably very loose due to having to pass through a 1cm channel. - I suplement my diet with a stool softener and bulker (fybragel - isphagula husk) which helps a bit. If I get it wrong - eat too much or accidently eat something I'm not aloud, then all hell breaks loose - Hence the constant griping and abdominal cramps - particularly bad when the diverticular disease is infected!
The same as my Urostomy my bowel will never improve - only deteriorate. It can all be quite embarrassing too!
Right then that's off my chest - Rant over....

My Family

2009-01-16T13:20:00.001-08:00

Here is a picture of my youngest 2 children Gemma and Jamie - who I love very much and my lovely wife Mary who has endured all and given all to keep me focused on trying to keep well - These were taken in Spain last October - My first trip away from home in over 3 years. The holiday was a present to me from Mary for my 50th Birthday. - Thank you Mary, Gemma and Jamie xxxxxxx

My Underpants

2009-01-16T09:18:00.000-08:00

Ok - what the hell - In for a penny in for a pound. I have amazing undies. I get 6 pairs free on the NHS every year and any ostomate can have the same. Well I was told that they sell these in Harrods for around £20 a pair and that they will last forever. Well they will need to I can say. So I dare anyone to write 300 words on the subject of a pair of underpants.
I have 6 pairs of pale blue (denimn) and 6 pairs of dark blue. They are specially desined for men (and I'm sure women can have them in a beautiful pink design too and they are probably called panties or knickers or something - but I wouldn't know about things like that would I?) who have an ostomy. There is a special pocket inside which supports your bag. There is also a second pocket, with 2 open slots at the bottom of the pocket, where you can attach your night bag adapter through. Very well made and a good design. They are very comfortable and have a high waste band so that you can have all of your bag under the waste band. Apparently it is cool these days to have your underpants and logo showing above your trouser waste band, so I am definately in with a chance of "fitting in" somehow! My trousers are a definate problem though as I can't have anything squashing my abdomen and certainly NO BELTS! - So Simon Cowell is my Mentor for styling on pants. When I wear a suit or normal pants I use bracers to support them - so I have these amazing flashy bracers which have designs of computers or cars on them - I'm told bracers are coming back into fashion. I wear loose cloths most of the time to disguise a filling bag and to help with bending over forward a bit.
So there you go underpants can be quite ........ well not sexy .... but certainly interesting, and indeed comfortable too - all at the expense of the NHS. Cuiwear is the manufaturer of these special undies for those who are interested ...... x

Friday was a stinging day.

2009-01-16T08:42:00.000-08:00

Well here's how it has gone today - I've had to do some serious work, it involved pacing out NHS carparks. I don't do walking and I certainly don't do pacing. So, I did it anyway, and now I'm suffering. What's left of my prostate is stinging like mad - It just feels like I'm busting to go for a wee. But obviously that can't be the case. As I have BPH - Benign Prostate Hyperplasia on top of everything else, all I can think of is that it is the swelling inside my perineum which is causing a fair bit of stinging and discomfort. Well, I suppose it goes with the territory.

I'm in hospital next friday for a small op (again) under general anaesthetic. for the docs to have toot inside and see if whats left of my urethra (from tip to prostate) has any viability or is a complete mess. I was diagnosed with bladder cancer at some point a couple of years ago, and although it was stated (by my current hospital) that it was probably the MRSA disguising itself as bladder cancer, they will still have to check and see if my prostate is cancer free. If not, or if the BPH is to aggressive then no doubt I will have to have a prosatectomy at some point. But still it's good to know they are keeping an eye on me one way or another.

I've just had a thought about what Amy was saying about her night bag getting all tangled up and creased and stuff - so this is what I have put as a comment on Amy's blog:
Ok Amy - here's the trick with night bags - I sleep on the right hand side of the bed and my night bag is placed in a cereal tupperware holder (no lid) - I wear a leg strap cut down from an abdominal strap (as the band is wider) which has a tube holder on it - all are velcro. Now this means my stoma bag never moves at night and the only bit of discomfort I get is when my night bag tube pulls as I try and turn over to cuddle Mary when she is on the other side of the bed - The straps are called Abdominal G strap made by Simpla (coloplast)product code 383003 .......

If that helps anyone else then please use this system as it was only by chance that I came across being able to adapt the abdominal straps I was recommended to use when I was told I was going to have a Supapubic catheter (which in the end I didn't need) a few years ago. It really does keep the pipes and straps in check.

One other thing is this - special underpants.......... I'll do that in a sperate blog as I want to go and help Mary with the tea.... Love to all - Phil x

My Urostomy

2009-01-15T12:33:00.001-08:00

Ok so here it is - This is my stoma which is the outlet of urine direct from my kidneys. It is called an ileal conduit urostomy because a section of ileum (small bowel) has been removed from my bowel curcuit and reused as a method of diverting my kidneys to my abdomen. The large scar from my sternum, down lower than you can see, and up higher than you see, also goes around my belly button and up to the bottom of my chest, was created at the time of my operation. The op. took about 8 Hours and I had 3 days in HDU plus another 2 weeks recovering. I wear a bag all the time over this area to catch the urine. The ring you can see around my stoma is from the edge of the adhesive area which seals the bag to my abdomen. And yes, I do have to shave my abdomen every other day! The scar took a good 6 weeks or more to heal. I had 40 staples down it, which were removed with special pliers. When some of the staples were removed some of the scar just popped open and left 2 large deep holes which took months to close. It actually looks like I've got 3 belly buttons! But hey, who's counting? - now can you see why Mary calls it a strawberry?

It can be very tender at times and I feel like I have to protect it from anything touching it. It's particularly difficult with children who are just the right height with swinging arms and worktops in the kitchen. I always sit on the couch with someone on my left and up against the arm of the couch on the right to stop stray elbows knocking it. If I touch it, even slightly, then it will bleed. It has hardly any feeling but the surrounding area is quite tender. I change my bag every evening at about 8:30 although at a push I can just go overnight and change the next day, but I do have trouble with the flange (adhesive bit) wrinkling and then causing pinching of my skin it's attached to if I leave it for too long.

The reason I have this is because during an operation for something completely unrelated, I had to be catheterised and caught MRSA, which killed my bladder. I was catheterised for 21 months until I was taken care of by a Manchester surgeon (Mr Betts) who I am eternally greatful to. I would have died if I hadn't had this op. Even tho I consider myself as reasonably ablebodied, up until my op I was full time in a wheelchair and completely severely disabled and in unbearable pain. The operation saved my life and I can now hope for a much better quality of life than before.

Top right is a familiar picture to all Urostomates I'm sure. This is the change bag kit. If I can help anyone who has or is going to have a urostomy then please comment or ask anything and I will do my best. Thanks to Amy for the inspiration and setting the precedent to show it how it is..

The rest of today

2009-01-15T11:19:00.000-08:00

It's 20 Past 7 and I'm trying to get my brain off work for a while although it keeps popping up every now and then for a brain storming moment aaagghh!. I keep focussed on getting a new car. We've had thi old Discovery for 5 years now and I really fancy the new model HSE version, but hang on a minute have you seen how much they cost despite Land Rover having 1000s that they can't move due to the ressession or whatever it's called.

I love this blog thing as it gives me chance to get things off my mind. The children are fighting again and I'm getting a bit fed up with the cheek that's coming out of their mouths. How are you supposed to correct them these days. I used to get a clip round the ear when I was a child for even looking as if I was going to be a bit cheeky. I don't shout at them much either because I hate seeing the kids get upset after I do - Mary says I'm too soft - I probably am, but I find that if I get uptight or cross I end up spending the next couple of hours with a gut wrenching abdomen pain and then can't sleep that night with worry over the children. I should know by now how to manage with them as I have been Dad to 6 children an these are the last 2 - I can guarantee that! - Except of course ......... grandchildren - Kaiyan is lovely, he's just 18 months old and a really fantastic little fella, and Chris has said that he's going to be a Dad in 7 months time now, so that's another one to look out for .... aaaaagggghh again!

Ok so now it's time to discuss medical issues....... Stoma and railway line pictures to follow!

A day in my life pt 2

2009-01-15T08:53:00.000-08:00

.......... Back to a day in my life - it's now about 5 pm - I've managed a whole day sitting in front of the laptop sorting out a tender for our company. Eventually got it bound - (binded?) and sent off in the post - Gemma is annoying everyone by standing in front of the telly swinging a toy snake around her head (nothing unusual about that). Jamie is sat on the couch cuddled up to Mary watching High School Musical DVD.What's for tea? well here goes ...... fish again, I suppose as I find it very difficult to eat anything with meat in or anything with skin on (fruit) - Got to watch acid levels too. Perhaps a seafood chowder with bread and butter mmmm nice.

I've just found some new friends on Facebook - Amy is great, she has exactly the same medical condition as me - but I feel very sorry for her as she has failing kidneys now and has gone to hospital today for a scan to see if her next op is possible. It ain't easy being a urostomate I can tell you. I'm going to highlight a few issues we have to face every day due to our condition and I'm sure Amy suffers the same if not worse as she has had hers for 6 years and I've only had mine for just over 16 months. - Off to make tea now - I'm a bit peckish

Thusday

2009-01-15T00:05:00.000-08:00

Today I feel tired, due to the amount of work I've managed to push myself to do over the last week or to. Strange really as I tend to maintain an olmost obsessive routine my daily life, I still feel absolutely knackered today. I'm finding that trying to control my diet is difficult.

I'm suffering a bit with the constant niggling in my bowels - It's like a griping feeling, and I need to access the toilet regularly, especially first thing in the morning while I'm trying to get the kids ready for school. That's another story too - Jamie won't get out of bed without a fight and Gemma is so engrossed in Tracey Beaker that she dresses in very slow motion.

I am surprised at the amount of daily duties and normal life stuff I am managing to get done despite my disability. The kids are fighting now - I just ry and stay calm - my philosophy is calm breeds calm.