The Horror Stories

DISCLAIMER/APOLOGIA. If you are an Ostomate, a Cancer Fighter or are close to one, this post will likely make you angry with me, so please don’t read. The last thing I want is to anger, upset or hurt my new community. If you have been newly diagnosed, like me, I wouldn’t advise you don’t read either, because the last thing I want is for anyone to go through the same experience as I am recording here. My only advice to you at this stage – to avoid ending up having to write crap like this – is don’t join any social media support groups or start researching your diagnosis until you are past the grief stage and have regained your inner strength. If you do read, please be aware that this is written from a perspective that came within the first few days after diagnosis, the last few days of January 2022, The stories are 100% real, and an honest interpretation by my already very damaged self. These thoughts came well before I met some of the wonderful people in the Ostomate and Cancer Communities, who went on to reassure me that I was just very unlucky coming across some of the worst extremes of the world of serious ill health. I will get to writing about all of you, if you are still reading.I want to be able to look at this in a year’s time and be like “WTF was I thinking?” with a massive smile on my face, but at this stage, that remains to be seen.I also feel that I have to make a reminder from my first post here.. If you are upset by this, please don’t take it out on me. After all, I am fighting Cancer and writing has been part of my prescription. I will get round to writing more positive posts but this has to come out first. The last thing I need right now is being hated on. If you are upset, just remember this. I have the sincerest respect for you all, and whatever ways you have to help you through your battle. This is just how I am fighting mine. that and I am so very, very sorry.

~Kurona

I need to write this to get it out of my head, as I feel I am constantly aggravating the Ostomate and Cancer Communities with the same questions, the same fears, the same fatalist rhetoric. Trigger warning.. Its going to be a mix of graphic medical descriptions and self pitying, Woe-is-fucking-Me warble. Oh and much bad language because I am actually so Utterly. Fucking. Furious.

After the original diagnosis back in the Autumn, I was advised to join support groups on social media. At that time, it was probably the worst thing I could have done. Instead of providing relief, it exposed me to the absolute worst case scenarios of both life with Cancer and life as an Ostomate. And seeing those horror stories on top of the overflowing mental crisis I was already contending with was a volcanic explosion waiting to happen. I did have some positive things come from joining the groups, but that requires its own post. I would advise not joining support groups until the initial darkness of diagnosis – plus shock plus grief plus the mental nuclear fallout – has significantly subsided.

Being in the desperate situation I was, I took any advice that was offered. I went online and I joined the Groups, but also put my academic skills to use and went online to also research what I could about Colorectal Cancer and Ostomies. I came away more terrified than informed. Articles pointed out just the same and in some cases even worse outcomes than the support groups did. Dear Auntie Google even pulled up an article stating the significant loss of quality of life that I was facing as an Ostomate:

I read articles listing colostomy problems in great and graphic detail, and just how humiliating and messy they are, especially for someone who hasn’t known much of a life beyond being constantly pointed and laughed at.

What I have learned from the groups and articles is nothing short of nightmare fuel.

POONAMI. When it’s got to go, it’s got to go. It won’t matter where you are or what you are doing. It will be on the bus, on a train, in a car, in a restaurant. In the shops. At a gig. In the middle of the fucking street. I’m going to leak. My Stoma Nurse told me that bag changes or emptying will happen once to three times a day. But that is for people with relatively normal bowel behaviour. I have IBS and Anxiety, which come with regular diarrhoea and tummy upsets. From what I have read of people who actually live with these things, (unlike her!) the constant fight against accidents is forever going to be on my mind. I can see myself never leaving the toilet, setting up my bed in the bathtub. Even though I have been told time and time again that leaks rarely happen, every other post in the groups I have read have been very graphic descriptions of bags leaking. Of flush Stomas sitting like inward belly buttons and producing output that constantly misses the bag. Of bags filling up in one sitting and overflowing, never the right size to catch it all. Of “Pancaking”, where the output gets stuck in between the bag and the base plate that sticks to the skin, and either leaks out or causes the bag to fall off. Of “blowouts” and “explosions” and going all over clothes and bathroom floors and even walls, about having to lean over the sink to catch the eruption. Of hours spent in the shower for it all to happen all over again. Of days spent in tears and mess. They even have a word they use when talking about these leaks and pancakes and blowouts and explosions. They called it a “Poonami”.

If all of this is happening with just normal poo, what the hell is it going to be like having IBS and Anxiety and the diarrhoea that comes with it? Oh and the big one.. Having Belly Flu. Having Food Poisoning. I can’t even bear to imagine, but my brain will do it anyway. The impression that has been so deeply carved into me is that I am going to be slave to something that behaves any which way it wants, and I will constantly have to be ready for the next revolting disaster. There won’t be any way of controlling it. Or stopping it. Or even knowing until its too late. I will never want to leave my flat or be seen in public again.

I AM NEVER GOING TO GET ANY SLEEP. Many of the horror stories about leaks describe it happening at night. It happens so often at night I doubt I am ever going to sleep a full night again. The horror stories have told me about getting up three, four, five times a night to empty a bag. Not being able to lie comfortably because of Stoma pain, or rolling over onto a full bag and POP! Waking up in a puddle of poo. There were posts about having to lie on Puppy Pads to catch leaks. Line the mattress with a plastic incontinence sheet which crackles when you move. All those memories of being a kid wetting the bed have come flooding back. I will forever live in fear of bedtime.

EVERYONE IS STARING AT YOU AND LAUGHING. I spent most of my childhood being told that I draw negative attention. That I set myself up to be laughed at with what I said and how I behaved. And there’s nothing like a good old loud, wet fart to get people pointing and giggling. If there was even the quietest fart-like noise in the classroom, the kids used to shout out that it was me. Now it’s going to be for real and uncontrollable. Unstoppable. I’m going to be noisy. According to an article I read on a site called “The Patient’s Lounge”

Gas passing through the Stoma is hardly ever silent… It can be acutely noisy…loud enough to attract anyone in earshot

The Patient’s Lounge

To counter it, the article suggests giving up all sorts of food and drink in order to get just a minor sense of control back. It means no more spicy food. Most of the contents of my freezer are home made Curries. No more fizzy drinks means no more Prosecco. No more Gin and Tonic. No more rich food or drink like red meat or red wine. If I have to give all of that up, I will stuff my bloody Stoma in and rip myself a new one. As well as making noise, gas causes Ballooning. It fills the bag up so that it sticks out of clothes, making itself very visible and it’s presence very known. Its going to get everyone’s attention. And then of course.. The smell when the bag has to be “burped” like a gassy, sicky baby.

VI-POO. I am going to smell. Gas smells. Leaks smell. I’ve read how Ostomates have to constantly carry Deodorant and something called “VIPoo” with them at all times. One complained about how they made their entire house smell. I live in a tiny flat. One even said that not being able to smell the bag was the first sign that they had Covid. I am going to have to get COVID to be free of the smell.

OFF THE MENU. I already have a difficult relationship with food and drink, courtesy of being a fat girl with Dysmorphia and mental health baggage that required whatever cheap and easy coping mechanism I can think of. To have any modicum of control over this unpredictable alien thing, I am going to have to give up so many foods and drinks I enjoy. Some like Onions and Garlic form the basis of most of my cooking. Some I even depend on because they are easy to obtain and are for now, affordable. It’s not like food banks can cater to medical dietary requirements. Beggars cannot be choosers. Food and drink is going to aggravate the Stoma and make passing output painful. It’s going to cause more output. More noise. Even less control. Even more risk of humiliating leaks and explosions and pancaking and ballooning and mess. Despite my Stoma Nurse telling me I can have a relatively normal diet, all the horror stories I have read have named virtually every food as a risk.

I am more inclined to listen to the people who actually have a Stoma and have had to navigate their life around them. I was so frightened of eating and drinking after my last surgery that I spent weeks barely eating anything, so that’s likely to happen again with the coming surgery. At least then I will lose weight, right? Haha. WRONG.

WEIGHT GAIN. The articles and posts say it all. Stomas cause weight gain, not loss. I don’t know how so many photos online show Ostomates as skinny, as this utterly contradicts the first hand accounts I have read. They must have their diets cut with military precision, and burn themselves to ashes in the gym. Or the vast majority of Ostomates are so shameful of how they look they won’t post any photos of themselves, and leave it to those who miraculously keep their bagged bodies looking healthy and gorgeous. Unfortunately I am more like the former.

HERNIA HELL. If these beautifully thin Ostomates really do run themselves ragged in the gym to maintain their figures, then how the hell do they not get hernias. These were again something that before my diagnosis I only associated with old people, a product of being in that stage of life where your health turns against you no matter how careful you are. I will barely have to move an inch to cause one, especially in the early days after surgery. Hernias are serious and painful and scary and often result in more time spent in the bloody hospital. Never mind intensive exercise, just bending over to pick something up or put socks on will cause one, unless I fork out money for an expensive specialist belt, that I will have to then live in day and night. I’ve got some wonderful mental images of my fat belly spilling out over the top and bulging from the bottom, only to end up with the fucking hernia anyway.

WEAR IT BAGGY TO FIT THE BAG. I read how some people have had to solve clothing discomfort by cutting holes in their clothes in order to fit the bag. And they don’t have a fat belly and sensory comfort issues to contend with. There is of course specialist-made Stoma wear, but like I’m ever going to afford that on government benefits. The horror stories dictate I won’t be able to wear any nice clothes anymore, let alone signature gothic clothes. Goth fashion is notorious for being tight fitted. Not only am I already too fat to wear most gothic clothes well these days, a bag on my waist is going to make that utterly impossible. Even the simplest jeans and t shirt will be a no-no. I read that jeans can be worn only if they sit like hipsters or high waists, neither of which I can get away with as a fat girl.

So there will be no more jeans. No more tight fitting dresses. No more corsets. No more lingerie. I’m looking at spending the rest of my life in Bridget Jones Knickers, joggers and baggy T shirts.

IT’S GOING TO DESTROY MY SKIN. I’ve seen graphic photos of what constant use of the base plates and adhesives can do to skin. I have seen photos of rashes and sores, skin splitting and raw, allergic reactions even. This on top Stomas that produce so much output it makes them bleed. I won’t show any of the images I saw on here because of people’s individual privacy, but I will show it all in its graphic detail when it inevitably happens to me. I want you to see what I have to see.

I AM GOING TO HAVE TO CARRY SO. MUCH. STUFF. The amount of medical stuff I am going to have to have in grabbing distance is nothing short of intimidating. I’ve seen photos of it all, taking up entire tables. Bags. Wipes. Sprays. Disposables. Sticky things that I don’t even know the names of. A plethora of Drugs to stop this and counter that. And the fucking VI Poo. How am I going to remember how to use it all and what is meant for what? On top of this there will have to be spare clothes for the inevitable leaks and pancakes and blowouts and poonamis. I’m going to be carrying an entire outfit, with the bloody shoes and bag to match, everywhere with me. Every day. I might as well pack a fucking suitcase for a trip to the cornershop.

TRAVEL. On top of having all the medical supplies and x2 of every outfit and being on guard for the inevitable poonami when you’re miles from the nearest toilet, here come the stories of being humiliated at airport security. One first hand account recalled being forced by security to remove all their clothes in front of everyone because security believed they were using their bag to hide something. I probably won’t even make it that far anyway on account of just how expensive travel insurance will be for a chronic medical condition in Post-Brexit Britain, well beyond the reach of a person reliant on sick and disabled handouts. My photo shoots abroad will be consigned to history. So much for the bucket list. No more trips to remote, beautiful places. My days of adventure and finding peace in the wilderness are long gone.

THOSE WHO COULD NEVER ACCEPT IT. I have a horrible feeling I am going to be one of those people who will always be living in permanent conflict with their Stoma. They begrudgingly come to live with it because they have no choice, but it will never be their friend. It will always be a blot on their quality of life, getting in the way of their every waking.. And sleeping.. Moment. One that I read stated they had named their Stoma after an abusive ex, because

The Stoma is exactly like an abusive relationship. It shatters your confidence, robs you of your dignity, leaves you feeling totally repellant and you never know when it’s going to kick off.

Anon.

They went on to say they would always resent the Stoma for ruining their quality of life. Maybe Auntie Google was right all along.

After a while I stopped looking for posts and articles. I stopped searching, I stopped reading, I stopped posting myself. I opened the wine bottle and cried on Twitter. That was that. I was simply beyond frightened for my future health prospects. But the horror stories wouldn’t stop haunting me. I didn’t look for them but they kept finding me. I would be absentmindedly scrolling, looking for positive-thinking memes or some other mental health related fluff and then suddenly, there they were. It’s like bad news is somehow magnetically attracted to me, sticks and won’t go away.

What lies beyond these frightful glimpses of life in the Stomaverse come the brutal reminders that flash like garish lights being shone right in my eyes. That this is CANCER. and ITS GOING TO KILL ME. That my surgery won’t be a success, it won’t get all the cancer and I will be faced with months of Chemotherapy and the horrors that come from that. Hair loss. Chemo brain. Violent sickness. Endless fatigue. All the articles I have collected in preparation for this eventuality point towards miserable after effects and lasting damage. Even my closest friends tell me I won’t cope with the Chemo process, that it is something I will never want to have to go through. Even if they do get it all, the horror stories have shown how it can come back with a vengeance, and beyond the reaches of treatment. Even the best outcome where they get it all and I drift uneventfully into remission, I am still faced with five years of gruelling tests. Colonoscopies through the Stoma every three months. The awful Moviprep that utterly debilitated me last time will turn my Stoma into a something resembling a Yellowstone Geyser.

and lastly.. There are THE OBITUARIES. Colorectal Cancer is a killer. Its the second biggest killer after Lung cancer. I only have to idly scroll my feeds to see stories of Colorectal Cancer patients who didn’t make it. Even though my team said they’re going for a cure, even though neither my friends or family believe I am on death row, it’s still eating away at me that this can’t be cured. That there’s part of it that will escape. Or it will come back with no mercy. The social media groups are riddled with obituaries for those who lost their fight. They never once moaned. They loved life to the end. They were always smiling. They were always positive. Not like me then. I would rather have my eyes propped open with toothpicks and put in front of Cannibal Holocaust than be faced with something this terrifying, and then be expected to paint a smile on my face. World Cancer Day was the worst. I very nearly didn’t get my first blog post out because in the midst of writing it I was seeing post after post of those who didn’t make it. The one that really hit me was the photo of “Paula” (not her real name) on her wedding day. 29 days later she was dead. She was barely thirty years old. It was the same cancer as mine, and it had spread to her lungs and bones before she even knew it was there. I still don’t know what Stage my Cancer is. It could very easily have spread in the time between the original tests and now. I’m suspicious of every feeling of pain, every change in my body’s behaviour.

What hurts me the most however, is that amongst all these horror stories I am seeing so many people, both friends and strangers alike, living their best lives while mine is now thoroughly out of reach. And as guilty as I feel for it, I just can’t be happy for them right now. I can’t even relate to them anymore. Success is like a word in a foreign language, the meaning is utterly lost on me. Their posts make me boil with rage. Not at them of course, but at myself. For How I let my own life pass me by. And at my cancer, which has dashed any chance of experiencing those things in the future I have left.

So there it is. This is how what I have read and seen has painted a picture to me of my future.. Uncomfortable, messy, embarrassing and short. I feel like I need to prepare myself for the backlash from all the angry cancer sufferers and Ostomates out there who I just painted in an appalling light, but this is what I have read, how my brain processed it and I’m being honest in what I write, even when it exposes me for being just an utterly awful person. I have done my best to protect the anonymity of the people who’s posts and articles I have read and cited here, but if you see this and recognise yourself, please don’t sue me. I am too poor for court fees. And to all of those who have helped me and somehow are still reading my anxiety driven shite, this is written from the perspective I had before you stepped in. I haven’t written about you yet. I am grateful to you all so please bear with me. This had to come out first.