My Stoma Story… Surgery Day, Part One. 

My Stoma Story… Surgery Day, Part One. 

Mornings are always early in hospital. No matter how terribly you sleep the noise and light always seep into your dreams and rouse you from the tiny abandon you’re clinging to. The morning of my surgery was no different. Even though it was well past four when I eventually switched off and drifted into oblivion, I was awake and anxious before the hour hand was barely scraping by six. Today was shaping up to be one of the longest of my life. 

The words of disgust I’d heard the day previously weighed heavy on my mind, whilst the bowel prep still weighed heavy on my digestive system. Despite having nothing to eat since lunch and my drinks stopped in the night, that liquid dynamite was still wreaking havoc on my insides; helped along by my hyperactive nerves. You couldn’t tell by looking at me but I was practically catatonic. Making pathetic small talk one minute and crying the next, seconds ticked by like hours. I swear the sands of time slowed that morning. 


I called my husband to try and take my mind off the sight and smells of breakfast wafting my way. (Food always smells so great when you can’t have any doesn’t it?!) He promised he’d be with me as soon as possible; but with the school run and a toddler to attend to, it would be last eleven when he finally arrived. In the meantime I waited. I worried. I pestered the nurses. I worried some more. 

It was around nine when the anaesthetist arrived at my bedside. He seemed like a nice guy. Down to earth, approachable. He told me how he would numb my pain with nerve blocks and I told him about all the different pain killers and ways of administering them that don’t work on me. He politely dismissed all of what I said, confident that his approach would be nothing like everyone else’s. Desperate to believe him, I nodded and agreed. The surgeon arrived whilst the anaesthetist was still at my bedside, they shared pleasantries as I milked over the similarities between doctors and buses. It’s always the same, you wait forever for one then a whole load turn up at once.. 

Meeting my surgeon was somewhat of a relief, if only a minor one. I had started to believe I’d never lay eyes on the guy! In my imagination he was some eccentric old surgeon with a scalpel and a glint in his eye. In real life he was just an ordinary man. So ordinary his face is hazy from the fog of memory. I probably couldn’t pick him out of a lineup. 

He was the man who would change my life forever and I wouldn’t even recognise him if I bumped into him. 

What I do remember of him was that he listened. He seemed to take in what I said and genuinely try to assuage my worries. I babbled on about my recent struggles, the extreme increase in my pain and the fear that had brought with it and begged him to check over my bowel before closing me up. He assured me he would and I believed him. For a brief moment my fears were sated; until he shook my hand and disappeared from view. My calm disappeared with him, only to return in part when my husband arrived. 

The hours he was there I felt stronger. More able to cope. My husband and I bicker and argue, we are both stubborn and dig our heals in. But we also share a love unlike one I’ve ever known before. He is my best friend, my safe place, my home. With him beside me I feel like I can get through anything. He calms me and gives me strength. We spent our time chatting, holding hands and even both trying to doze. Just being close to him helped. 

All too soon though he had to leave. I’d hoped he would see me off to surgery, but the school run waits for no man and he had a long drive back home. I bawled like a baby after he left. Not for long though, minutes later I was being wheeled down to the operating theatre to meet my fate… 

The surgery before mine had run long, they were still finishing up as I was entering the anaesthetic room. The staff inside were all really cheerful. Each one of them seemed happy and friendly. Of course it could all have been an act for me, but they seemed to be a really great team. They were kind too; within seconds of entering the chilly room I was shivering, seconds later I was handed warm blankets to make me more comfortable. As a bonus, they also halted the annoying chattering coming from my teeth! 

When I’m nervous I tend to babble. Not only that but I fall back on sarcasm and humour. Minutes before surgery to perform an ileostomy in a room full of people who were about to see me butt naked and sliced open on a table I was most definitely nervous! Thanks to that days rota being shuffled I’d somehow ended up with two top anaesthetists and their teams in my surgery, so the room was pretty crowded. My nerves peaked and out of my mouth came what was practically a stand up comedians set. I can’t for the life of me remember what I was saying, but I remember laughter. My own and the six or seven people surrounding me. Fleetingly, as the anaesthetic took hold and my eyes drifted closed I thought to myself… 

If the worst happens and I don’t wake up, at least I went down laughing. 

*Watch out for the next instalment to find out what happened in the aftermath of my surgery and subsequent adjustment to life as a #baglady. 

Off to the Seaside… 

Off to the Seaside… 

Today I went to the seaside with my family. We had fish and chips. Walked the promenade. Sat by the harbour and explored down the stairs where people were crabbing. Took the kids down to play on the sand. The day was finished off with candy floss and ice creams and a drive home in the sun. It was pretty much perfect. Or at least it was to the kids, to social media.  

But that wasn’t my day. My day started with my husband telling me it was time to rise and me point blank telling him there was no chance. I needed another half hour, minimum. It started with me feeling shaken  and achey, with a temperature I’ve been unable to shift and a bag on my belly rapidly filling with fluid. You see I haven’t found that sweet spot with my output yet. My stoma is still in its infancy and I’m either sloshing out boatloads of liquid or blopping (yes I made that up) out very thick sludge. There is rarely an in between. Today was fluid. Mornings are often fluid, which doesn’t seem to help my body when trying to take my meds and hydrate. 

Fast forward to leaving and there’s me desperately using my jacket, bag and a cushion to try and prop myself up in the car. My neck and lumbar spine have been complete agony recently, to the point it’s getting a little/a lot scary. Just getting myself dressed and ready had taken so much out of me I was half an hour late with my POTS meds and hanging out of my A hole. Meds administered I peeked up about half way into the journey and started to feel hopeful for the day. The sun was shining, my family was smiling and I was just about on the right side of coping. 

Arriving at Brid we pulled up and hunted down a fish and chip place for lunch. We always start with lunch. Our days out are really only afternoons, I don’t have it in me just yet to cope with a full day of driving and walking around. Not even on a good day. The chippy was a pleasant eat in place and I could see out over the bay from where we sitting. Food didn’t take long and really was very yummy, especially the chips! They reminded me of the type we would get when I was a kid. All good so far! 


Until it wasn’t anymore. About halfway into my meal my stomach began to hurt and I felt hot. REALLY hot. I stripped off my jacket and ploughed on, its not unusual for a meal to have strange and uncomfortable effects on my temperature. But this time, things just kept escalating. As I began to feel myself shudder internally I knew I had to lie down. Immediately. 

Opposite the chippy was a set of two benches. Just about close enough that I could make it safely. I quickly told my husband and beat a hasty retreat, my toddlers screams ringing in my ear as I left. I felt guilty as sin, but I knew I couldn’t turn back and console him. Waste any time and he would likely see me fully flake for the first time in his little life. I’m not ready for that, neither is he. As I reached the bench a rather bedraggled looking man plonked his backside right in the middle of it. Luckily there was a second one. Not so luckily it was right next to a huge bin. But beggars can’t be choosers and I made the best of it. My bag under my head I laid out, ignoring the stares from strangers as I hid behind my over sized sunglasses and stared out to sea. At least the view across the harbour wasn’t half bad!


Soon enough, a little too soon for my body, my family emerged from lunch and I had to scrape myself up and slope down the incline to the promenade. The second I stood my body started screaming at me. 

Idiot!! Get back down!! What the hell are you trying to do to us?! You need to be horizontal, horizontal was working!! At least sit your ass back down somewhere, anywhere!!

I could hear this narrative through every creak and groan of my joints. The pull of each muscle and the ever increasing feeling of trying to walk through a vat of Vaseline after approximately 25 shots. That pain I was just about coping with spiked to a point where every nerve ending in my body bristled and screamed. But I tried not to show it. Just minutes from my rest on the bench I was sitting on a harbour wall. I had tried to look around a small flat museum with my family. But that was too much, so the harbour wall it was. 


I smiled and tried to enjoy the sunshine. The sun that was making me sweat buckets whilst the (apparently) refreshing breeze dumped buckets of ice across my agonised body. Outwardly I smiled whilst inwardly I writhed like a worm on a hook. Not ten yards further I was sat on another bench. Gran and I chatted whilst my husband took the kids to explore the exciting looking steps down to the sea. Covered in barnacles and going right down under the boardwalk the kids loved it, especially seeing the people who were catching crabs on a line. I sat in the sun. Missing the excitement on my little ones faces. Gran told me I should have used my wheelchair. She would have pushed me. I smiled and said I was ok.

The longest walk of all was to the entrance to the beach, past whizzing whirring fairground rides and gaggles of laughing holidaymakers. The kids forged ahead with my husband as me and Gran brought up the rear. She saw me stumbling and dragging my feet, desperately catching myself as my knees went from under me on more times than I care to remember. The children didn’t see; but my older two knew, of that I’m sure. I confided in Gran I probably shouldn’t have come, and she asked if I’d like to leave. No came my answer. I couldn’t show my kids the golden sand and glistening water and deprive them of going to play. I’d be fine. 

Gran and I had a drink whilst my husband played in the sand with the kids. Again I had to lay down, meaning I couldn’t even see them frolicking on the sand. Soaking their clothes in the salty water and not caring one jot. People stared. One young boy was so brazen that he sat less than a foot away, staring intently until I had the audacity to say hello (in my least crazy person voice). I didn’t care. I don’t care. My family is what matters to me and if laying down on a sandy wall is what’s needed to remain present for them, then that’s what I’ll do. People can stare all they like. I do however draw the line at kids purposely kicking footballs at me, of which I told them so!! 


What felt like ten million years later my husband returned with our sopping wet brood. I was less than impressed as we had no change of clothing and no towels. I’d also been laid wearing my jacket and covered over with Gran’s. Though it was sunny, in my opinion it was certainly not the weather to be going for a, fully clothed, dip in the sea. Paddle, perhaps. Drenched to the waist like my eldest son, not so much. My husband disagreed. 

That was the last bit of my barely there patience done. Rather than argue in front of the children I headed back to the car, stopping only at the loos for a quick bag empty. (Though I may as well refer to it as a pee for the amount of liquid I had in there!) At least I’d been able to use the burst of adrenaline to get me back to the vehicle in one piece. Windows down and seat back, I slowly breathed in and out trying to focus on anything but the complete agony I was in and the faces of nosey passers by. Though faster than my journey down to the prom, my journey back had been a whole lot less controlled. It wouldn’t surprise me if people were under the impression I was just another drunk, rather than a mum just trying to push her ever failing body as far as she could. The kids got their ice creams as I pulled myself together. 

An agonising car ride later and I was once again home. As soon as I could I sloped off to bed, stretching flat my now completely broken body and telling my father about the day we had had at the coast. He told me I should get a lightweight scooter. Things would be so much easier! Minutes later my husband told me I should have cancelled. 

But I couldn’t do any of those things, cancel, wheelchair, scooter. 

To cancel would have let down Gran and the kids, who had all been looking forward to this treat. So why not use my wheelchair or a scooter? Because I’ve been doing better. I’m managing. I’m supposed to be building up my stamina. 

But, as I lie here broken and close to tears, I have to ask myself if that’s truly what I’m doing. Am I building myself up or breaking myself down? When I was taught to cope with my ill health it was all about being as active as possible whilst making sure to pace out every aspect of my life. Is sitting down at each point I cannot physically stand any longer pacing? Or giving up and not going altogether on bad days, is that pacing? Or, is pacing using aids such as a wheelchair or scooter in order to make the best of what energy and pain reserves I do have? Maybe then I’d have had it in me to make it onto the beach rather than just watching videos taken by my husband. 

My Stoma Story.. My First Night in Hospital. 

My Stoma Story.. My First Night in Hospital. 

I had hoped to update regularly whilst in hospital. Unfortunately the signal on the wards where I was staying was absolutely terrible; so that wasn’t possible. I couldn’t even FaceTime my kids regularly. Instead I took lots of pictures to document my stay, now I finally feel up to sharing My Stoma Story with you via a series of blogs; starting with my first night in hospital… 

Day 1: 13.6.17.

Rather than turning up the morning of my operation, as I did with my hysterectomy, it was decided at my pre op I should arrive at hospital the day before my surgery. Due to my health issues my surgeon and I thought it best I do a bowel prep in order to clear me out ready for life with a stoma. As horrible as that was, I’m so glad I did it and I’d recommend anyone else take the same approach. Clearing out meant I could concentrate on getting used to my new stoma without having the pain and difficulty of getting any remaining stool out of my colon. It was this clearout, and my need to remain hydrated throughout (thank you POTS) that landed me in hospital a day early. 

I’m not going to lie, I arrived at the hospital completely terrified. But that calmed as soon as I was on the ward and settled. The nurses were friendly and the other ladies in my room seemed really nice. There was four of us and we chatted most of the afternoon away. My husband and son stayed to settle me in before leaving for the school run, it was then the serious business of preparing for my operation began. 


First off the stoma nurse arrived, she drew two ominous black dots on my bloated stomach. One of these would become my new stoma, we wouldn’t know which until after surgery. It suddenly dawned on me that after the surgery my stomach would never be the same again. It’s strange to look down on your stomach and know that in less than 24 hours your entire anatomy will work in a completely different way. That this relatively ‘simple’ surgery would change your life drastically. I looked down at those dots for a long time, contemplating the journey ahead. Little did I realise quite how much things would change. 

Marks are put on both sides of the abdomen in case internal scarring prevents the bowel from being pulled through to the surface in one particular spot. The same part of the bowel will be pulled through regardless of which side it comes out at. 

Even though these marks just look quite haphazard, they’re actually pretty carefully placed. The nurse had me sat down and stood up, I also wore my favourite jeans in order to try and avoid their wasteband. The nurse will try her best to mark the surgery site so it is easy to access whilst being comfortable with your usual wardrobe. Obviously placement can never be guaranteed though, it all depends on what the doctor finds inside. 


To try and take my mind off the daunting task ahead of me I arrived at hospital with a bundle of goodies. My friend had kindly bought me a colouring book and pencils, I’d also filled my iPad with all the remotely interesting free books I could find. But most importantly I had a plastic cup which had been lovingly decorated by my daughter. Not only the cup, but the box too. Love hearts, kisses and words of love adorned each side of the box. I read them over and over, reminding myself constantly of the people who I was truly doing this for. 

Of course I wanted to feel better in myself. But it was my need to be more involved and present for my little family that really drove me to have this operation. My husband and children are my world and I want to be as well as possible for them. 


Lunch arrived at around twelve thirty. My nerves were running riot and the meal they offered me did not appeal. I couldn’t even force down this soggy short bread and ice cream. Luckily I still had a pastry left over from breakfast which was just tasty enough to be worth feeling nauseous for. If only I’d known that within minutes of my meal I’d have my cannula placed and be told I was no longer allowed anything solid; I may have thought differently about my lunch! 



Two hours later and it was time to start the dreaded Picolax. For anyone who hasn’t tried it, this stuff is basically liquid dynamite! Created to clear out the bowel quickly and efficiently, most people choose to sit as close to a toilet as possible when they take it! The nurses on the ward, and some of the patients, looked at me with pity as I struggled to gulp down the putrid mix. To me there is little on this planet that tastes worse than Picolax, I literally feel it hitting my stomach and starting to pummel its way through my bowel. Keeping this stuff down is definitely not the easiest task for me! 

Soon those looks of pity turned into confusion. Why wasn’t I running to the toilet? An hour passed. Then two. Three. Four. It was almost five hours before the Picolax had ANY effect. Even then it was not the bowl shattering poonami they were expecting. ‘Luckily’ they had more Picolax for me to drink.  By round two I was exhausted and looking nine months pregnant. My POTS meds had worn off and I was walking like a weird chicken zombie hybrid. This was turning into a long night. 

As I speed shudder shuffled to the loo for the umpteenth time the lady from the bed opposite me chimed up, ‘You know I couldn’t understand why you called your husband your carer when you arrived. But looking at you know I completely get it.’ Thanks. For anyone thinking of pointing out my inadequacies in future, regardless of motive, please don’t. 

The night wore on; even with my earplugs, cushion and sleep mask, I was in no way able to sleep. Yet it wasn’t my stomach tying  itself in knots or the possibility of a river of molten lava spewing forth from my nether regions without warning that was the issue; unfortunately I’m pretty used to those symptoms. No, the issue was my nerves over my impending operation, aggravated by a series of conversations I had had throughout the evening with my bedfellows. 

You see, the lady opposite me had stomas. Stomas which she didn’t exactly love. In fact, she believes many of her current health issues relate back to her previous stoma surgeries. (Due to my preoccupation with my own problems, hunger and exhaustion, I didn’t fully understand the timeline of her declining health. However, it did seem to me that her main issues pre dated the stomas.) Though I felt sad for her that she held so much resentment and mistrust towards doctors, I tried hard not to let her experiences colour my own. 

What I did find upsetting was when she bragged about chastising another patient for having her ostomy bag on show. Telling all of us in earshot how disgusting it was and how she feels the new movement to try and normalise stomas just encourages people to stare. Which they will, because it’s weird and disgusting. 

Her words really shook me. To the point I closed my curtains and sobbed silently to myself. Totally oblivious the woman carried on talking about how gross it was of anyone to see a bag, even with a cover on. We should all respect others and keep it hidden! Another patient popped her head around the curtain and sat with me a while. She had seen my upset, and even though she wasn’t quite sure what a stoma was, she wanted to help. ‘Ignore her’, she said. ‘It’s her age, she’s a prude, people won’t really think like that.’ I nodded in agreement. Wiped my tears and told her I was fine. 

But I wasn’t fine. 

The very next day I’d be having surgery to have one of those ‘disgusting’ bags. I knew that thanks to my issues with pain relief I wouldn’t be able to stand anything over my tummy, my bag would be on show. My see through bag that was surely much worse than a regular fabric covered one. Would she be on my ward then? Would she chastise me too, at a time I’m most vulnerable? My mind wandered further into the future. To my holidays and summertime. Should I hide my bag? Would a cover not be enough? Would people really stop and stare like the woman had said? She had lived it. So surely she knew? Or was she just paranoid thanks to already hating her extra appendiges? 

Question after question swirled through my mind. Worry after worry. Too tired to colour I attempted to take my mind off things with mindless games on my phone. I tried to block out the worries that crept in and gnawed at me. I tried, and I failed. 


Like with all other difficult nights I’ve lived through, the darkness eventually passed. As the sun rose I finally closed my eyes and managed to catch a few precious hours of sleep. It was then, as I closed my eyes to try and make the hours pass faster, that I vowed to myself I wouldn’t let anyone’s issues define me. Nobody else’s opinion will affect what I wear and how I live my life. In a matter of hours I would be getting operated on. An operation I was sure would improve my life. No way would I let anyone else’s negativity impact me. Yes, my nerves were still there. But now my determination had returned, for that I was stronger. 

To anyone else facing surgery and going through similar emotions as me, I say this: Fear is not a sign of weakness. To find something terrifying to the point of sobbing your heart out yet still go ahead with it is a sign of true strength, not weakness. Never beat yourself up for being afraid or upset. Just work through it and continue on your path with determination. 

To be continued… 
* Please note that my experiences in hospital may not reflect your own. I am simply documenting my journey in the hopes of spreading awareness and alleviating any fears I may be able to. 

Check back soon to hear all about surgery day and my early recovery. 

Election 2017, Voting Day. 

I like to keep my blog free from politics. After all, this is my health blog. My blog about life with disability. What does politics have to do with it? 

I didn’t post during the American election, aware I’d be attacked for being English. Told I know nothing. Instead I lamented with friends. Tried to support them as their worst fears came true. I didn’t post during Brexit. I shared my thoughts and campaign messages I’d found on my personal page. But I didn’t write about them on here. A snap election was called. I remained silent on my blog. This platform that allows me to reach so many people with my thoughts. 

But, as I lie here. Fifteen minutes into June 8th 2017. I can remain silent no more. 

Because this election is about disability. It’s about the crippling grip our government currently has on myself and others like me, wringing every last drop of hope out of us. It’s about the lack of hospital beds, the wait for treatment, the doctors and nurses choosing to work abroad rather than face a life of toiling for hours on end to receive little pay. It’s about the social care we need being pretty much none existent at the moment. Budget cuts forcing pensioners into fifteen minute care slots, disabled people in unfit housing because there’s simply nowhere else for them to go, ill people being offered cheaper medication with more side effects and less benefits. 

This election is our countries chance to band together and say enough is enough. Not only when it comes to our NHS, but to all our public services. Our police force, that was so drastically cut they could no longer keep track of the terrorists on our doorstep. Terrorists who for the ten years prior to the cuts hadn’t managed to accomplish major attacks. Now we have had three in quick succession. Why are we losing lives at the hands of terrorists likely radicalised in Saudi, a country our Courbet PM is providing arms to?? Enough is enough, for our soldiers. Sent off to fight in illegal wars. Wars that are more about making money than actually needing to fight. Our troops deserve better. If they’re going to put their lives on the line, let it be for the right reasons! 

I know I will likely lose followers because of my views. Because I voiced them. But, as I lay here feeling sick to my stomach, I don’t care. For the first time in my life, in over a decade of having the right to vote, I am genuinely afraid of the result this election will bring. 

It should be an easy choice. A good man, who has taught hard for our rights and believes in democracy, who will carry out his parties manifesto to the very best of his ability regardless of if he ‘won’ the vote, who has a fully costed plan to fairly share our countries wealth and provide funding where it’s needed. Or a questionable woman, who’s own husband is minted but somehow doesn’t have to pay his taxes, who has no qualms about dessimating our police force and sending our nurses to foodbanks, who believes in taxing the poorest communities beyond their means while reducing tax for big business. It should be an easy choice, but for many it’s not. 

Why? Because the newspapers have painted Corbyn as a clown. A bumbling idiot who has no idea what he’s doing. Thousands upon thousands turn up to hear him speak, yet the newspapers still claim he has no authority. No passion. No conviction. The EU have offered to slow the Brexit process until a new government is ready, but the papers still tout Mays prophesies that a new government couldn’t possibly be ready in time to start proceedings. They claim he’s a terrorist sympathiser, while hiding the fact she sells arms to the country which is one of the highest threats! 

Another why; why are the papers (and the BBC) so biased?? It’s simple. Money. Money makes the world go around and it definitely controls the viewpoint of the media. The papers are owned by the elite, the elite who want to keep the rich rich and the poor poor. (I know I sound like a conspiracy theorist when I say that, but look at the history to see it’s true.) They are going to do everything they can to keep a man who wants to fight the crooked tax evaders, and make OUR COUNTRY work as well as possible for ALL of us, out of power! Of course they’re running him into the ground. We have to see past it! 

So, whilst it’s clear who I think the right option is today, I won’t ask you to vote my way. What I will say is this…

Please, I beg of you, before you tick that box  have a full readthrough of the manifestos. Think about all the doctors and teachers who have made videos begging you to vote for change. Think about your old age, and where you want your savings to go. Think about your children, do you want university to be a viable option? Think about the old lady down the street, who won’t get her winter fuel payment anymore. Think about the disabled, trying to hold it together after all the epic cuts and braced for yet more. Think about the police officers who were made redundant, the nurses who feed their families at food banks. Ask yourself, is Britain truly Great right now? 

Ignore the bias of the tabloids and mainstream media. Research for yourself. Forget about family voting traditions or past PMs. We aren’t going backwards. We need to look to the future. 

VOTE FOR THE POLICIES, NOT THE PERSON. 

Finally, choose the candidate who you believe will make BRITAIN Great again. Great for everyone. After all, we are the original Great, let’s be the best we can be. 
Here’s a few links if you want to start that research: 

https://www.thecanary.co/2017/06/07/boris-johnson-left-floundering-journalist-finally-asks-question-sink-tories-video/

https://www.facebook.com/labourparty/videos/10154579470777411/

https://www.thecanary.co/2017/06/05/corbyn-delivered-a-speech-that-could-win-him-the-election-but-the-bbc-isnt-showing-it-video/

http://www.telegraph.co.uk/news/2017/06/05/david-camerons-former-aide-steve-hilton-calls-theresa-may-resign/

http://www.independent.co.uk/news/uk/politics/mps-pay-rise-salary-commons-parliament-1000-public-sector-worker-pay-politicians-a7476601.html

http://www.digitalnewsnetwork.net/2017/06/04/london-bridge-is-falling-down-and-so-is-theresa-mays-credibility/

http://www.independent.co.uk/news/uk/politics/theresa-may-naylor-review-nhs-privatisation-sell-off-property-developers-a7766486.html

Waiting List Lifers.. 

Waiting List Lifers.. 

When my surgeon agreed to do my ileostomy he asked me if I would do him a favour. He is running a study of people on waiting list for surgery and hoped I’d partake. Of course, I said yes. In my opinion, the more doctors know about life as a patient the better. So, in that vein, I’d like to share with you my experience of waiting for my surgery date… 

It’s been about a month now, since my surgery was agreed. Over two weeks since my pre op. Still I have no date. Things may have gone a little faster, but my extensive and complex list of health issues threw a spanner in the works. As always. 

In order to be scheduled for surgery and receive a date you need to have the go ahead. ‘Fit to proceed.’ Whilst my tests at the pre op all came back ok (despite being told I’d had an acute kidney injury I wasn’t aware of recently) I couldn’t be pronounced fit without more information from my POTS team. Recently they’ve put me on medication for MCAD and the nurse who oversees pre op was, rightly, concerned this may affect my care needs whilst in surgery. My progress along the conveyor belt was halted until an email came back outlining the correct protocol to follow for me. 

Whilst I appreciate the fact that the hospital is doing their best to ensure a good outcome for me, the wait was maddening. Every day I was calling around, leaving messages on voicemail after voicemail. Until eventually I heard back from the lovely lady coordinating my pre op assessment to say that she had given the green light!! Fantastic! I was elated! Finally things could get going!! 

OR NOT… 

My surgeon was away most of May and will continue to be away in June. Meaning that, if I want to be sliced and diced before July I need to put my faith in another surgeon. A surgeon I haven’t even met. This is something I was dead against. I like my surgeon, I TRUST my surgeon. He is the best my hospital has to offer. I always said I would just wait to be seen by him. 

But this waiting is driving me mad! Each day I hope and pray that the post will fetch me a hospital letter with my admission date, or the phone will ring with a cancellation I can slot into. Meanwhile, my condition is worsening. The prolapses continue to get larger and larger, making it harder to pass anything. Anything at all. My insides hurt. They ache and they stab, twist and pull. My stomach swells and my kidney area feels about ready to explode. On top of all that sits the stomach cramps and absolutely crippling back pain. 

I’m trying to continue normal life. To still get out and about. But by the end of the day I’m yelping in pain like a wounded pup. Any movement takes such an effort that it’s leaving me on the constant verge of tears. I feel angry and disgusted with my body and what it’s doing to me. I’m afraid that my bladder will retain too much and give out unexpectedly. I sleep (for the little I can get) on a towel as I’m afraid of accidents. I’m afraid that soon my back will be so painful I won’t be able to attend to my complicated bathroom needs. I’m afraid that my kidneys are becoming damaged from the waste I cannot clear out of my bladder. I’m afraid that things are worsening to the point that surgery will have to be more extensive than we hope. 

On top of all the health fears, I have the fear of letting my children down. Letting my husband down. Being seen by him as a vile and grotesque creature. All these fears, the pain and exhaustion, they are all bubbling up inside me twenty four seven. Each day I’m left waiting feels like a lifetime as my mood plummets to depths I dare not think about. I am constantly walking a tightrope, a thin sliver of hope preventing me from falling apart at any moment. Tears and anguish are never far away at the moment. 

So, whilst I am truly desperate for MY surgeon to do the operation, I told the waiting list coordinator I would accept treatment from another surgeon. In fact, my exact words were ‘I’d let anyone do it. As long as they have a scalpel and a will to do it, I’m in!’ 

That’s actually how I feel now. The desperation to get it done outweighs the need for my doctor to look after me. But, even with my flexibility, it’s not that simple. A surgeon cannot simply be assigned a case and told where to cut. Surgery doesn’t work like that. Each different surgeon has to agree to the merits of the case. They need to read the file and understand why the patient was offered that road of treatment. With my health problems being so rare, that’s not guaranteed for me. I worry my notes could be passed round, with each doctor refusing to do the surgery. In the meantime my surgery date with the doctor I want is getting further and further away. 

So I wait. I wait and I worry. I wait and I cry. I wait and I grit my teeth and attempt to cope with the pain. 

Such is life on the waiting list. 

The Surgeons Decision. 

The Surgeons Decision. 

If you follow my blog you may remember the impassioned email I wrote my surgeon. I was honest and brutal about the difficulties I’m facing thanks to my prolapses; basically I begged him for help. He responded. Soon after I was sat in his office and given three options to choose from, repair, permanent irrigation tube or, stoma. After a lot of research and soul searching, consultations with my GP and POTS nurse, I decided the stoma was the right decision for me. 

A few weeks ago I saw my surgeon again. I told him how my issues had worsened. Seemed to be worsening each day. He began to suggest re doing tests I’d had months earlier. A year or more earlier in fact. I took a deep breath and stopped him in his tracks. 

No more tests. No more thinking. No more suffering. I told him I had made my choice and was ready for surgery. My voice shook as I spoke of the research I had done and my reasons for choosing this route. I spoke of the impact on my life each surgery could have and how my previous ‘fix’ of one of the prolapses has already failed. Failed to the point of being worse than it was. I made it very clear that I knew the pitfalls as well as the positives of having a stoma. This is in no way the ‘easy’ option. There was no easy option to choose. All were fraught with complications and changes to my life. It is just that this path gives me more chance of change. Of no longer suffering with pain in my stomach and back all the time. Of not living my life around my bowel. 

Eventually I stopped talking. I sat there, shaking, awaiting his response. ‘Right, we will get you on the list for surgery then.’ 

HE SAID YES!!

He agreed. Immediately. No more appointments. No more tests. I would be put on the waiting list for surgery! Not only that, but he decided to do an ileostomy rather than a colostomy. This will bypass all of my large bowel, hopefully bypassing all my problems with it! He’s going to do a keyhole loop procedure for now, if that still leaves me with pain from the prolapses then he will consider a larger procedure at a later date. I can understand that decision, after all I do have a bajillion things wrong with me. Why have a huge procedure when a relatively small one could do the job? A procedure that only takes forty five minutes will hopefully change my life completely. 

He left the room to get the required paperwork and I dissolved into a puddle of tears. My friend comforted me as I sobbed. My tears weren’t sadness; they were relief, joy, fear and excitement all mingled into one cocophany of emotion. As each breath rattled through my lungs I felt a weight lifting from my shoulders. Soon, within eighteen weeks, it would all be over. I’d be through the surgery and on the road to recovery. I could hopefully start living again. 

But at the same time, I knew it would all just be starting. My recovery. Adapting to a new way of functioning. Living with a bag and evolving my life around that. It was a truly terrifying and liberating thought. 

The surgeon returned and was perplexed at my tears. ‘I thought you’d be happy?!’ ‘I am!’ I exclaimed, explaining the explosion of emotions overwhelming me. As I left I hugged him and thanked him for saving my life. Because whilst the problems with my bowel aren’t at the point of killing me, they are stopping me living. Hopefully, with this change, I’ll be able to take part in my own life again. 

NB. During the appointment my surgeon spoke of how refreshing it was to have a patient be so open and frank about their condition. He really appreciated my in depth emails. Whilst it is not always possible to write to a doctor directly, we can advocate for ourselves during our appointments. As a patient, I urge you to research your condition and your options. Take notes to appointments if needed so you can speak clearly about your problems and the way you want treatment to go. NOBODY knows more about your body and your life than you, you are the expert in that field, so be confident in yourself. If you’re not happy with treatment plans, request another opinion. This is your body, it is you that has to live with the treatment being offered. You cannot simply end a shift and walk away from things, so advocate for yourself. Always. 

N:Rem Sleep System.. Is it worth it? 

N:Rem Sleep System.. Is it worth it? 

In case you didn’t read my previous blog I’ll give you a little info on the N:Rem Sleep System and why I chose to review it. If you follow my blog, you’ll be aware that I have chosen to trial several products that I feel will be of use to us as in the disabled community. Products that offer to improve our health, or quality of life in some way. It is for that reason that I contacted the N:Rem company. 

The company claims that this sleep system is specifically designed for people who suffer pain. The mattress is integrated with foam tablets of three different densities. These tablets can be swapped around the five different zones in order to effectively create a mattress that is bespoke to your needs. Unfortunately, I was unable to try the mattress as a whole, but I have been trialling the foam tablets on my own sub par mattress at home, here’s my findings… 


It was about two months ago that the tablets arrived in my home. My husband lugged the two huge boxes upstairs and I was shocked by the depth of the foam pieces. Often mattress toppers look thick and luxurious on photographs, but what arrives is a disappointing pancake of patheticness. That certainly wasn’t the case here. The foam was thick and sturdy, you could easily feel the different densities just by giving them a squeeze. 

Alongside the tablets came a comprehensive leaflet with instructions on the best placement of them, to suit pain in various areas of your body. I get all over body pain, but I do find the worst of it centres around the base of my spine. So I planned out the mattress to suit that. (I planned, my husband placed. Not that the tablets are heavy; just a little cumbersome as we have a kingsized bed.) I have to say I was very impressed that the foam easily covered the whole mattress; many places say things are kingsized but they never quite fit. I suppose that comes with the fact these are designed to actually slot into a mattress, rather than sit on top, so they need to be snug. Each density of tablet is a different colour, making them very easy to identify. 


Initially, I was incredibly impressed with the mattress toppers. For the first time in a long time, I found laying in my bed comfortable. The main improvement was to the pain in the pressure points where my body weight hits the mattress. Usually after a nights sleep these areas are pushed and smushed into awkward positions of pain. But not with the N:Rem tablets. With these tablets I could wake up in a much more comfortable state. Making it much easier to get a start on my day. 

I also found that the sleep I did get was deeper. Much deeper. To the point I often wouldn’t move in my sleep. There have often been many nights where I would toss and turn throughout the night, waking even more exhausted than when I went to sleep. Not so anymore. It is only on the highest pain nights that I struggle to get comfortable, rather than almost every single evening. In fact, for the first time in my adult life I managed to sleep the whole night on my side. Even better, my arm wasn’t completely numb and useless when I woke up. The different zones of the mattress tablets allowed my body to sink down where needed, and have extra support in other areas. This lead to the perfect sleeping position. Sleeping on my side is something the doctor has recommended for a while, to aid my digestion, so I’m glad it’s finally an option for me. 

Top tip: If you’re going to invest in a mattress, be sure to also get the correct pillow for your needs. Pillows come in all shapes, sizes and densities and can really make a huge difference to your sleep posture. 

Unfortunately during this trial I’ve had some severe dips in my health, leaving me pretty much bed bound for long stretches of time. It was during these periods in bed that my back pain became incredibly severe. It seemed like the tablets weren’t working. 

Disappointed, I rearranged them. Then rearranged them again. Then did it a third time. Eventually, after trying out pretty much every combination mathematically possible, I gave up. Perhaps my body is just too cantankerous to help? I was dreading writing the review, not sure what I would put. But then something changed, I moved to my husbands side of the bed in order to watch some television one night. The next morning my back pain had lessened. Was it a fluke, or had switching sides really made that much of a difference? I decided I best steal his side on a more permanent basis in order to find out.. for the sake of my readers. 

It was soon clear to me that the problem wasn’t the tablets. Over on my husbands side my backpain eased and the quality of my sleep continued to improve. I do still have insomnia, but when I do drop off it is a deep and refreshing sleep. I’ve also found myself able to nap during the day as soon as I become tired; rather than tripping the light fandango for at least an hour trying to find that sweet spot before eventually giving up. When I discussed this with my husband, he wasn’t surprised. Apparently on my side of the bed there is a me sized dip in the mattress, becoming particularly deep around backside level. 

So that’s the answer, my sub par mattress was making it impossible for the tablets to do their job. 

This is exactly why N:Rem do not provide the foam tablets as a pack on their own. They used to, but realised the customers weren’t getting the improvements they needed. So now the tablets are provided alongside the 2000 pocket sprung mattress, which they slot into. They are then topped with a viscoool layer and finally zipped into a high quality cover. The cover itself can be zipped off and washed, something that really appeals to me as I know life with chronic illness can be somewhat messy. As can life with kids. The whole mattress can also be stripped back for cleaning and airing out, great for those of us with allergies. 


I do wish I had been able to try the mattress as a whole. I’d love to know just how cool the cooling layer is, and if that helps with my sleep. My health issues mean I get severe hot sweats at night, so much so I have to have a fan running all year. The pocket sprung mattress sounds pretty amazing on its own, with the whole set up it must be mind blowing! Also, having just the foam tablets on my bed can be somewhat tiresome at times. My mattress is not designed to hold them in place like the N:Rem is, often they move and spread apart. Plus, I can feel where each one meets the next due to only having a fitted sheet on top; a fitted sheet that barely makes it around my mattress due to the depth of the foam. However, even with all these little niggles I would not be without these tablets now. I can 100% say that they have improved my sleep, lessened my pain and increased my quality of life. 

The N:Rem Sleep System is definitely the top of my wish list! Particularly as there’s a FREE 100 night trial going on at the moment, during which you can test out different combinations of foam tablets to ensure you get the best for your needs. The mattress is guaranteed for TEN years with a free returns policy on it. Finally, there’s an interest free offer that works out at only £1 per night for the sleep system. (I’d probably save that in electric for the fan!) You don’t even need to pay a deposit! I definitely feel a good nights sleep is worth £1 of anyone’s money, don’t you?

To start your FREE 100 night trial click here or to order today click here. Type in THISLITTLELIFE at the checkout for a £30 discount! 

This blog post is part of a sponsored review of the N:rem sleep system. All opinions within it are my own and in no way influenced by the company. This trial is not available to the general public. It is a one off that has been organised in order to create independent feedback on the product via my blog. There may be financial reward should any profits be made as a direct result of this piece.