IBD – TOMAS THE STOMA

March 17, 2024

Nine year stomaversary

Nine years since the above photo, nine years since my life changed. Nine years sice emergency total colectomy with ileostomy. Nine years since I was in hospital for 10 weeks at deaths door.

This photo haunts me a bit because I was so poorly, my eyes are dead. I was only just over the initial surgery when I had a rectal stump blowout which lead to pelvic sepsis, then an awful complication of an ongoing ( nine years to be exact) pelvic collection leading to a fistula connecting from the collection to my perineal area, then causing a hole in the back wall of my vagina. I couldn’t eat so needed an NG tube for feeding, and to stop the sepsis I had to have a rectal catheter inserted into my rectal stump to my pelvic area.

Nine years of constant leakage and intermittent pain. Surgeries, some very big surgeries, taking muscle from my thigh/buttocks and creating a flap. All failed.

As you can probably tell, I am not doing so well, I am usually very upbeat and an attitude of just getting on with it. But that attitude gets me nowhere, everyone thinks I am doing ok because that is what I choose to show the world, I am not ok. I go out and enjoy my evenings, but can leak through my clothes, My friends have had to ( and want to ) help. If I sit for any length of time at work or stand for any length of time ( you can see where it gets awkward even considering telling them because nothing can be done) I get discomfort/ pain. It can travel across both buttocks and weirdly down my flap scar. I need and love my job so will just carry on.

Medical professionals leave you to get on with it until things get very bad, and even then most don’t understand the impact. GP’s will do what they can, but it’s not their area so to speak, so they try and help but can’t make big decisions.

I google and join groups just to get some idea of how little is being done for people with colorectal/gynae fistulas or perianal Crohns disease. Since my last surgery about 6 weeks ago where they lay open the fistula and debride it, and repair the hole in the vagina, it has left me with discomfort bordering on pain at times, a lot of leakage and a feeling that the gynae repair has failed. I have had antibiotics three times and my GP thinks I have a low grade infection which may benefit from long term antibiotics.

I emailed my surgeon’s secretary nearly a week ago with her saying she will pass on my message, nothing has happened except I now have this low grade infection issue.

If i’m honest, the stoma has been the least of my problems and has generally behaved apart from a few blips and the stomal fistula ( yes another one there)

So this year my stomaversary is a reminder that I am still unwell after nine years, so won’t be celebrating.

March 25, 2023

Another short stay in the hospital

A few weeks ago I started getting a bit of tummy ache with nausea after my evening meal ( it honestly wasn’t my cooking), this was on and off until earlier this week. I had made a yummy shepherds pie but with swede mash, my plate was completely empty it was that nice.

I went to bed and can’t remember if I had that weird tummy ache thing again, but anyway I went to sleep. I kept waking in the night with quite painful colicky spasms, but tried to manage some sleep. When daylight came I had a look in my bag and the stoma was swollen and I had very little output. Usually I have a fullish bag and need to empty a couple of times in succession. The pain was coming in waves so my husband said to ring the stoma nurses or GP. I changed my bag first because I needed to cut the hole much bigger to accomodate the alien trying to get out of my tummy. Then I rang the GP first, that was fun, ” You are number 22 in the call queue”.

When I finally got to speak to the receptionist to ask what I should do, she went off to speak to someone and then said A&E. Now I don’t mind this but I do think the GP should have maybe got me into the surgical triage unit at least. Anyway I tried my normal stoma nurses at the hospital but had to leave a message, so tried the stoma team at NAMS, which is where we have to order our stoma supplies from and where there are stoma nurses, they said A&E too.

So we decided we should go there, hoping that I don’t have to sit in the waiting room for ever and a day. I was in a lot of crampy pain still with virtually no output. When I went to the reception window I said I have a stoma blockage and he could see I was in some pain, and the lady next to him said, straight to majors. Thank you thank you.

I was getting upset with my situation and they were really nice to me, put a cannula in and gave me intravenous paracetamol then saline.

I kept being wheeled around the busy majors department a bit like a car park, one in, move one, move back etc. They kept me next to a nightmare patient who kept threatening to remove the cannula that was giving vital meds, the doctors and nurses kept explaining that she had a very fast heart rate and could go after the drip had finished, she wasn’t happy with that and kept going on and on. In the end they said take it out then go ( knowing full well that wasn’t going to happen). Meanwhile I was trying to relax to keep my pain at bay to no avail.

Next they decided I should have a CT scan, and off we went, when we got there they said good I have a cannula. It then dawned on me that I can’t have CT contrast otherwise this would happen, and I forgot to mention it.

CT with contrast allergic reaction

So off we wheeled again to majors.

They then decided it would be best that I see the surgeons, and they would arrange for them to see me.

We waited……and waited…. 4 hours so far for them. Ok I think we need to get you to the surgical triage unit and wait there.

Off went again. At the door to the unit, they more or less chucked me off the trolley saying trollies weren’t allowed in there ????? weird I had been taken in before on one ( and I saw many a patient come in on them too). So they sat me on a chair with others who had been waiting years by the looks of it. I had my obs taken and after about an hour I decided to ask if I was back of the queue again. No there was one more in front, would I like a bed?

Yes please I would like a bed, it was now 5pm and I had been at the hospital since 10am. I was put in a side room with my phone barely charged and waited again. My husband had been back just to see how I was doing and waited with me for another 4 ish hours. Finally a junior doctor came in and asked what was happening with my stoma. I explained how it was swollen and not producing much and I had pain. He was debating whether to see it but decided we should wait for the registrar. It shouldn’t be too long but you never know. He seemed to think i would be staying in anyway. I sent my husband home and waited again. The nurses kindly charged my phone for me.

The registrar arrived, actually fairly speedily in the scale of hospital time. and asked if he could take a look. The bag came off and the small amount of fluid that had managed to get out smelled like nothing I have ever smelt. I apologised but he didn’t flinch, good lad.

The swollen stoma was still swollen and the output during the examination was zero. He had a feel around and told the junior doctor what he was looking for and how the fistula was the only part that had any output. ( This was the case for about a year I explained). I think deep down they were fascinated, and he said he would get a rubber catheter to see if he could unblock it. So in went the tube through my fistula, and he prodded it around up and down ( It reminded me of having your fat sucked out) He said he couldn’t really get anywhere and tried the stoma itself, this showed that it was only going down a couple of inches. He tried again and to my ( and definitely his) surprise, the other end of the catheter came out the fistula. I have tried to recreate the image just for you, you lucky things. ( I am no picasso I’m afraid, the brown bit is the catheter, and the stoma was much fatter than this)

He then said he didn’t think this blockage would resolve by itself and that I may need surgery, but would see a colorectal surgeon the next day.

I stayed in overnight in that room. Extremely boring as it was just four walls and a clock, I did have a bathroom of sorts to myself though. The tap on the basin was a bit weird, you turn it on and a jet shot out all over you, very interesting. My husband said that’s because it is actually a bidet tap not meant for there at all.

A few saline drips later and I tried to sleep,I had no pyjamas as we didn’t know I would be in. But they gave me one of their mini toothbrushes and micro mini toothpastes.

I slept in my top but decided to take off my bra, I got it half way off then realised I had my drip on the other arm and couldn’t get the bra off any further. Just in time a nurse popped her head in and saved me from embarrassment.

So far I hadn’t been sick, just nausea so no NG tube for me this time, phew. But I was super tired.

The NG tube (nasogastric)

Next morning I still wasn’t allowed to eat, it had been 24 hours by then, but it was ok I knew that I might need surgery. A nurse arrived a bit later and said I needed to move again to green bay, I had no idea where that was and had an awful feeling it was back on those chairs, but luckily it was a proper bay of four beds. I settled down there saying hi to my fellow patients, and waited for my husband and daughter to bring my belongings, I couldn’t wait for my pyjamas, body lotion ( I was so dry since being in here) and my charger. Although I sent a much longer list these were my main items.

I finally got to see the colorectal surgeon who had a quick look in the bag and said I may have a kink in the bowel, and there was some output so we should watch and wait as these things often do resolve. I could eat and drink and I was happy with that, and spent a better nights sleep.

I woke the next morning with the colorectal surgeon back. He asked how things were and I said maybe some improvement, and he said I could stay another night to see or go home to wait how things went. I asked that if I went home does that mean if things were not right, would I have to go back through A&E, but no I didn’t as they would give me a 72 hour access to go straight to the unit if I needed. Ok then I will go home, and here I am writing this from my sofa wrapped in a blanket hoping I am healing.

December 2, 2022December 2, 2022

#CrohnsAndColitisAwarenessWeek2022

THIS PHOTO WAS TAKEN JUST BEFORE I WS TAKEN DOWN TO SURGERY 7 YEARS AGO.

Crohns & Colitis awareness week has always been a week full of awareness on social media. I think it is so important to talk about it, as anyone with bowel issues will understand. Poo and all things related to poo hasn’t always been talked about until recently. When I was first diagnosed over 30 years ago it was a very different story.

I didn’t have a clue what was happening to my body. I was a teenager enjoying life when all of a sudden ( yes it was that quick ) I found myself in hospital with a young doctor snapping on his rubber gloves with a wink to my friend.

I was terrified because I was being sick out of one end and what felt like losing my ‘innerds’ out the other. Pain, embarrassment and bewilderment followed, with lots of scary tests and needles. The threat of a nasogastric tube if I didn’t stop being sick ( I refused point blank). I didn’t have a clue at the time how on earth it could stop me being sick.

A very young male nurse coming to my call for help when I had soiled myself in the toilet, that was awful for a young female girl.

After many weeks in and out of hospital being pumped full of steroids,I was told I had inflammatory bowel disease. They didn’t know for sure if it was Crohns or colitis but at that stage the treatment was the same. After a clinic appointment I saw a leaflet by Crohns & Colitis UK, this would be my source of information in those early weeks. So for the next 30 years and many other hospital visits, I had indeterminate colitis, Crohns colitis, ulcerative colitis and or Crohns, it was never decided on which one I had. I don’t have any photos of when I was poorly back then, the camera wasn’t invented in those days ; )

Fast forward to 7 years ago and that was when Tomas the stoma joined my story. No need for me to go into those awful times, as this blog covers all of that, but I want to raise awareness of this awful disease, because there are a lot of people out there suffering in silence. If you know someone with IBD then please check in with them, their life has been changed irreparably and they may not think talking about their fears, or their bowels to friends and family is ok, but it should be ok.

Crohns & colitis UK

October 14, 2022

Surgery number… lost count

I have had another surgery. This one was so that my new surgeon could examine me under general anaesthetic through the vaginal hole into the pelvic infection, and see what is really happening in there and also flush it out to give me a few days leakage grace, we hope.

I got there at 7am as per letter and I waited a little while before being called. After observations were done I met the anaesthetist, and we had a chat and he said if I wanted to, I could probably be awake and have a spinal block as it wasn’t a big operation in my terms of past surgeries. We checked with my surgeon and he agreed and said he could also talk to me and let me know what was happening.

On with the sexy socks.

Off I went to theatres with a very lovely ( but slightly overly chatty about death of his family members and the rest of his family not having a great time) porter and I went into the little pre theatre room with the anaesthetist. After a try at getting the cannula in my hand, it did eventually work and then it was the spinal block time. It was reasonably painless and I then laid down waiting for it to work. This is a very strange feeling, as your buttocks go numb first and very warm. Then your feet, and I saw them wiggle at first but didn’t really know that I was doing it.

In the theatre they just got everything in order then put my legs in stirrups, last I had seen of them they were lying flat so when I looked at them legs akimbo, it was so bizarre as they just didn’t look like my legs.

After a lot of rummaging and feeling the table wobble about, I was advise that as first thought from the MRI results, I had a chronic pelvic infection that had found it’s way out of a large hole in my vaginal wall. I know, fun right?

We have a few options, he could feel the top of my coccyx almost in the cavity and sometimes you can get an infection in it that could cause this infection. The only thing with that theory is that I would have thought it would have been spotted when they did the flap and muscle transfer surgery.( the coccyx is sometimes removed then, and it had been a possibility in my case but they decided against it). If it is this ( it’s called osteomylitis ) they will first try long term intravenous antibiotics that I can also do at home enabling me to go about my life. If this fails they would probably have to remove my coccyx, which would mean going in from the front scar AND my healed flap, eeek.

If it isn’t the coccyx then who knows what it next. It’s back to the drawing board to see if they can work out what is causing this awful constant leaking of pus and fluid, sorry it’s too much info, but thats what it is and that is what this blog is all about.

Off I went to the recovery then the day ward to wait for the spinal block to stop working. This took longer than I thought and I was there for about four hours, as it took some time to clear fully. My legs were not my own and had a mind of their own. But the tea, coffee, tuna sandwich and flapjack made things better. Thanks girls x

Half way through waiting and being given refreshments, I realised I was drenched. This was the flush that my surgeon have given me now deciding to give me a bath, the nurses were fabulous for my entire stay and they changed the sheets, nightdress, dressing, bed floor ward hospital…..and all was well again.( It was just like water, nothing grim.)

I can honestly say that that I had the best care from that day ward at QMC Nottingham. They are going through some big changed to their wards but it made no difference to my care. I am going to do a shout out to them at the Queens day care unit admissions and discharge A45 block. Well done gorgeous nurses and HCA’s.

A slight bruise from the cannula and a massive dressing just to make sure 😉

I am now home and reasonable ok, still some slight blood and leakage, a bit of backache and some slight pain, so it’s feet up and cups of tea for me.

November 9, 2019November 14, 2019

When things don’t go quite according to plan

STOP I WANT TO GET OFF

Having surgery is a rollercoaster ride at the best of times, but what if things don’t go smoothly? how does that feel? it can be quite a challenge to keep positive. Was it something you did? or didn’t do? Was it something someone else did or didn’t do? It doesn’t matter what caused it, this is where you are and you have to get on with it.

All surgeries come with risk, and some more than others, bowel surgery in particular is a surgery with many risks, wound dehiscence ( where the wound breaks down in some way and the scar may open). This complication is strange as it isn’t a question of just stitching you back up, you need to have the wound packed over possibly many months to heal from the inside out. My abdominal wound opened up at the bottom and it took 6 months to fully heal , to view CLICK HERE

Weirdly it looked very painful but wasn’t really painful at all, and although the finished scar is not as neat as i had hoped, it looks like another belly button as it dints in too, but it healed well without infection.

This most recent surgery has some wound dehiscence , but because of where it is I won’t be putting you through the image. It seems to be closing quicker than the previous one.

I suppose my two most life altering complications were the rectal stump blowout ( in short, rectal stump blowout is a dreaded complication of an often already complicated patient scenario that causes pelvic sepsis )

The stump that was left in situ to be removed at a later date when I was more stable decided to blow its stitches causing pelvic sepsis. I had to have a rectal catheter placed through the burst stump into my pelvic cavity to drain the gunk that was gathered there. Lovely.

I would say it was one of the most uncomfortable things ( excluding or same as an NG tube) that I had. There is a balloon at the top that gets inflated after the tube has been placed, but whenever I sat or moved awkwardly, the damn thing brushed against something inside and caused the most excruciating pain for quite a few minutes. Unfortunately for me, the nurses didn’t really know the pain it might cause and kept insisting I sit out of bed now and again. I eventually spoke to a consultant who needed to reinsert it and he understood my issue and said I couldn’t sit with it, It was all quite traumatic, I had the drain for a good couple of months. This complication in turn caused the fistula and ongoing bottom complications that are still ongoing today but hopefully sorted with this latest surgery.

The other complication is with Tomas the stoma.

I know, he is lovely and cute and all that, and I probably would have died without him, but he is a complete pest at times. It started very early in my stoma journey in hospital. When Kate my stoma nurse and I discovered that poo was coming out of the bottom of my stoma where it meets my skin.

WARNING, PICTURES OF STOMA POOPING

As you can see, this can be a big nuisance for many reasons

The stoma can be quite watery or busier at different times and this can cause the bag to lift as it loses stickiness.
This as you can imagine, causes leakage onto the skin
And this in turn causes sore skin and incessant itching in that area.
It is difficult to change my bag standing up because I can’t put anything under the spout to catch poo as it comes out onto skin as well anyway.
I am constantly in a battle with my skin to keep it becoming a real problem, and I like to air it as much as possible when I change it, so it isn’t a quick change for me, it is time consuming.
I have the dilemma of deciding on more surgery to move the stoma to the other side of abdomen and hope I don’t get more issues doing that.
There are probably more but having a brain fog moment

All I can say is this, there is always light at the end of the tunnel, things do improve, and although it might not be the life you had hoped for, this new life brings new friends and new beginnings and maybe a life that’s worth living.

That leads me nicely ( ok plugging my daughters band Marty) to a song my daughter wrote for the band Marty, and I listened to it and thought it had some great words of encouragement if you are having a tough time coming out the other end of illness.

If you would like to follow the band you can find them on most social media sites @thebandmarty

October 22, 2017

No help for the families of IBD and stoma surgery patients?

I realised after the fact that my family just had to get on with it all without any real medical support, the support was all for us patients, and yes we needed it, plenty of it, but what of our families?

Most of us have been unwell on and off for years, and I don’t mean just a bit off, I mean full on housebound, bed bound, unable to attend events kind of ill. The year before my surgery I was a mess and my poor family rallied round and did things without me. I missed concerts that my daughter was in, quality time with my son when he was home from university, and my husband did everything and was marvellous. I had friends who did the running around for me too. Not everyone is as lucky and I cannot imagine how hard it must be for anybody who has to go through it alone. This would also apply for any type of chronic illness too.

My husband, wider family and friends watched me deteriorate over the year without proper support from anyone. The gastro team kept suggesting that although I had severe left sided disease I was also a bit depressed and should snap out of it. This was awful for me and my husband , because I thought he would believe them ( and he almost did, as they were the experts after all ) and I started to doubt myself, even though I was having temperature spikes, loosing a lot of blood and was constantly being sick. I couldn’t understand why I wasn’t being helped.

God only knows what my family thought. Yes I was ill, but was I as ill as I seemed? They had to wrestle with what they were seeing and what was being told to them. I had to wrestle with the feelings of illness and the thought that I was losing my mind.

Eventually my husband ignored the team and took me to A & E where I was admitted and was told by my surgeon that I needed a total colectomy within 72 hours ( it ended up being the next day, a Sunday). I remember my kids coming to see me before surgery was decided and I knew they must have been terrified even though we had discussed surgery within our family many times. My son said it would be the best thing and I would get off all those nasty drugs that I was given for the IBD. He was right of course, that was a good factor to consider.

As you can imagine, there were questions about why I had been left. But they never really got answered.

After surgery I was very poorly with complications and my husband came every day for nearly three months with me in tears every time. We spent our 20yrs anniversary on the ward, I was going to try and get to the Costa downstairs as our anniversary date( we live the high life ) but couldn’t face it. The ward had bought me a cuddly toy and anniversary card to cheer me up .

It took it’s toll on my family, and although I knew this, I was too self absorbed with my own problems to realise. Whenever I cried he said he felt that all eyes were on him and that they would think he must have done something to make me upset as I only got upset when he came. But in reality of course this wasn’t the case and the other patients knew I was in a dark place and very ill and often upset throughout the day, it just all floods out when a loved one comes to see you. The doctors don’t really have the time to sit with relatives and explain everything so they only hear second hand from the patients themselves and that can get twisted like Chinese whispers. I wasn’t doing very well so he arranged a visit from my sister in London as a surprise to see if she could help with my mood and get me moving more. I remember seeing her peek around the curtain and again I cried. This was becoming ridiculous. She talked me into getting in the wheelchair and taking a trip to Costa with them all. This was a military procedure as I had a rectal catheter in and couldn’t get very comfortable without a mass of pillows in strategic places, blankets etc.

I promised her I would try and get up every day, and I did. I wanted to do it for my family. I realised that I had been so self absorbed with my pain and worries I hadn’t even thought about my family’s feelings, I felt awful for this. It was the hardest months for us all. Even after I was discharged the journey wasn’t over. My husband would take me out in the wheelchair by the river , and each day we would get a little further and I would get out and walk back. There were times when I would be sick at the side of the path and I said on numerous occasions that I thought I would never be the same , would never be able to walk the whole path, would never nip to the pub for a quick drink with him after work (this one sounds weird to put in but this was something that we enjoyed and I missed). I wonder if he thought the same. He certainly never said, he just said that of course we would and things would get better. He was absolutely right but he must have had doubts.

In order for me to be allowed home he volunteered to empty and measure my rectal catheter twice a day, he would make sure I drank and ate enough, take my pills and generally be my total carer until I was well. He was my total rock but really got no support . He even packed my wound on several occasions so that they would allow me to go away for a few days. He is a tough cookie so many people think it didn’t affect him, but I saw the odd time when he could have done with someone out of our circle to talk to, but there wasn’t really anywhere specific to the needs of relatives in this situation. I have read many a story like mine with people who are in hospital for many weeks/months and their families just have to cope with all the ups and downs.

My friends had also left visiting times in tears seeing me in such a bad way. Everyone cared so much but they also could have done with some kind of support network. Maybe some information about what was happening and why, or a support group within the hospital for relatives and friends of those who have complicated illnesses or surgeries. I know this costs money and, to be honest, I would love to start something like this with the support of the wards, but I have no proper medical background so don’t think it would be allowed.

But I do have the experience, and that could be enough.

October 1, 2017

How my ulcerative colitis started

I remember always having some sickness and bowel issues as a child. I would often be very very constipated and be sitting on the toilet for hours until I had seat marks embedded into my legs. I also had sickness bouts every few months, they would come on for a few hours and then I would be right as rain again.

Thinking back, this could have had something to do with the diagnosis of IBD (inflammatory bowel disease) many years later.

I am also very sure that a stressful situation started my first proper flare. I was going to see my sister in London the next day, but stupidly went out the night before with my purse in my handbag, in the purse was just over a hundred pounds and my train tickets, bank cards , photos and other special things.

I went to the busy bar to get a drink with my two friends and when I went to get my purse out it had gone and my bag was wide open. A wave of mixed emotions followed. I was so upset and angry and just didn’t know what to do. We went outside and there were some policemen who helped me to call the bank and cancel my card, they said I was the fourth person that hour.

I went home upset all night and my dad sorted out more train tickets ( we did eventually get the money back from them for the original ones) and I still went to London. I started to feel generally not myself, I got loose stools and when I looked in the mirror I thought my eyes looked sunken and dark.

I got home a few days later and things deteriorated from there. I started to be sick , I had an awful pain where my appendix was and I was struggling to make it in time to the toilet. The doctor came out and said he thought I had appendicitis and needed to go to hospital. ( This is not uncommon , it can mimic appendicitis) I had never ever been in hospital let alone had any surgery so was petrified. I got there and the doctor examined me. He said because of the diarrhoea he didn’t think it was my appendix and they would do a few tests and I would be admitted. The sickness, pain and diarrhoea were terrible and I thought I was dying. It was taking a while for a diagnosis and I had to have many tests. I was bleeding a lot too which was scary and I just thought ” I have cancer”. I was on a drip and often needed the toilet urgently which would cause accidents as I couldn’t get there quickly enough with the stand and drip in tow. It felt degrading and humiliating, although no nurse ever minded, I minded, I was a young woman who shouldn’t be soiling herself and need looking after.

I was put on intravenous steroids and fluids and couldn’t eat with the sickness. I was advised I might need a naso gastric tube to stop me being sick and I refused I was so scared. I was started on Olsalazine but remember at the time I wasn’t advised that I should be taking it indefinitely, so when those were finished I didnt’ get anymore and became ill again.

I started to respond to the meds and they also told me I have IBD but they were not sure if it was Crohns disease or ulcerative colitis. ( They never really knew at all because they called it indeterminate colitis after that as it could be Crohns disease even now ) I spent some years in and out of hospital with this awful disease, with many people not understanding how severely ill you can be with it. Many think that IBS is similar but I can safely say they are nothing alike. When I am in remission I have IBS so that will tell you something about it. IBD can kill you as I nearly found out last year. I am in no way saying IBS isn’t horrible, but it is not IBD.

My life was not how I imagined it should be, the illness was ruining my life, I was having flares at times when I should be well, for example when I was about to have my babies I would flare, and those flares lasted for a good few weeks after the birth. Most christmas’ were the same and I remember missing one Christmas day with my family and being stuck in bed. I was in hospital when my children were very small which was awful. Going for meals would sometimes end with me going home early because I would feel unwell.

I do think that although the surgery for me and my family was very traumatic, I can go out and enjoy my life now more than I ever could before. I have my off days but if I really think about it, it is nothing compared to the off days with an UC flare.

August 21, 2017

Talking toilets…an inconvenience

Toilets are a necessity for everyone, but if they are dirty, in disrepair or just downright odd this is a nightmare too, especially for someone with a stoma or a bowel condition like Crohns disease or ulcerative colitis . We spend a fair bit of time in them so it is very important.

Take the one in the photo for example. Look closely and you can see a very odd toilet layout. In the reflection of the tiles you can see the bowl right ? now look where the loo roll is……. yep 5ft above your head. What the hell is that about? This was in a Wetherspoons in Camden. I wouldn’t mind but the loo roll dispenser has to be the most annoying one ever too. I have seen some strange or filthy toilets in my time but never one where the loo roll was so out of reach. I was so bewildered by this, that I decided to tweet Wetherspoons about it. They replied and said that a lot of toilets were set up like this, I disagree I have been to a few and none of them were set up like this. If there are others, I feel it means they have a complete lack of interest in their customers and they should be embarrassed.

I have decided to check out some others, and name and shame or congratulate the owners. In fact if anyone would like to join in and send me any pics of toilets good and bad, I might do a poll or toilet wall, and send the owners a “Tomas trophy” for best and worst.

I know that people can use them and cause a mess.

But on the other hand staff should check them regularly for their customers. This loo was ok but the floor was dreadful, you don’t want your trouser leg in that when you pull your bottoms down.

What about the wonky loo seat? Not nice for most folk, but for us ostomates who sit right back on the seat to empty our bags its awful.

And if anyone has pee’d on it……..

You might say that we could be the dirty ones because we empty our poo into the loo regularly, but let me assure you that most of us are super careful and super aware of what we are doing and where it will go, and because we clean the bags etc we clean where we have been as well. The last thing we want is for someone to use the loo after us, and know what we have been doing. In particular, if we are at a friends and need to use the loo, their is no way in the world that I want to leave any evidence that I have a bag ( even if they know)

I prefer the disabled toilets, yes I am allowed to use them and yes, if anyone dares question me I will tell them why I am allowed to use them, and possibly I might even show them. These seem to be cleaner because they are not used as often I suppose, and they are bigger for us to sort ourselves out properly, although most of these don’t have a decent shelf to put essentials on, so if anyone is reading this who has toilets, be a dear and stick a shelf up.

How about this in Japan?

Toilets for Ostomates

Necessity of Toilets for Ostomates

Many Japanese ostomates are hesitant to leave home and have active lives in the community because they worry about how they will empty their pouches or handle leakage problems should they occur away from home. It is particularly stressful and instills panic to deal with leakage of stool or urine while in public. In a JOA survey, 50% of ostomates reported these helpless feelings.
Therefore, it can be said that the availability of public toilet facilities to meet ostomates’ needs is the key to their sense of well-being and rehabilitation in the community.

(Can you imagine our government going this far? This is fantastic to see, I just happened to come across it when googling.) There is more…

a) Toilet
b) Small-sized sink with a warm water nozzle (for discarding stool in the pouch and washing in an upright position)
c) Wash stand
d) Medium-sized sink with a mirror and a hand held warm water shower (for washing or changing the wafer, and for rinsing and cleaning the peristomal skin)
e) Large and deep sink (for washing soiled clothes, etc.)

4) Preparation of the Environment
– Clear instructions on how to use each facility and its equipment
– Control of access to the toilet room. Easy access and use by ostomates is the basic premise, but safeguards against use by unauthorized persons are also important, especially at transportation terminals.
– Signage indicating the availability of ostomate facilities should be clearly visible at the entrance of each toilet room.

The installation and practical use of toilets for ostomates in Japan is just beginning, and we are in the process of trial and error to establish an optimum facility. To attain this goal, ostomates must be responsible for cooperating with the related authorities, owner organizations, and facility developers on all stages from planning to use and improvement.

It is expected that with increased availability of toilets for ostomates throughout the country, the rehabilitation of ostomates into the community will be accelerated, providing a better Quality of　Life for Japanese ostomates.
It is also hoped that through this initiative, public awareness of ostomates’ problems will be enhanced.

This just blew me away……..

3) The ease of using the facilities and equipment must be examined in view of the flow of an ostomate’s body movements and various changes of posture required from the start to the end of caring for his problem (such as changing the entire pouching system, standing, sitting, etc).

Click here to read the full article

How amazing if this were to happen in our lifetime, no one with any disability would have to worry about going out incase of problems ever again. The other amazing thing is that they have rolled this out over many parts of Japan but we don’t even have one on colorectal wards let alone anywhere else.

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