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. 

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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. 

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.