Never Utter The Words “Things Can’t Get Worse”
These are words I’ll always regret. We only evaluate how good or bad something is based on our previous experiences, the benchmark we have for comparison. When I had been dealing with chronic constipation for a few years, I thought things were bad, really bad. It was difficult to manage and affecting relationships and work, and I felt desperate. And yet, looking back, I was actually able to manage. I worked throughout those years, I had relationships, I took day trips and I had an active social life. So while things were difficult, they absolutely could have been worse, and that’s exactly what happened. The first surgery I had showed me what ‘bad’ really was when things became worse than I ever thought possible. I had no idea this could happen and was utterly blindsided by how quickly and significantly my health declined. I’ve been left with a shopping list of new conditions, problematic symptoms, chronic pain and a stoma. Now I look back and say I only ever used to have ‘just’ constipation, and those are the days I miss.
Things could always be worse. It may not seem that way, but you don’t want to wait to find out for sure what’s behind that door by tempting fate and not appreciating the situation now, whatever that may look like and however difficult it may be.
Answers May Forever Be Elusive
As someone who likes to understand the cause and effect and to have explanations, I found this a difficult one to accept. Sometimes things just are the way they are, and sometimes there are no answers. The cause of my initial constipation that seemed to happen overnight will forever remain a mystery, no matter how hard I searched over the years to find an answer.
At present, my insides occasionally like to have a dance along to music I can’t hear. I’ve ended up in the emergency department countless times now after my small bowel has twisted on itself, which is both insanely painful and inconsiderately inconvenient. Last year I had to have an emergency surgery as my insides doing the Tango nearly killed me. Although the surgeons think adhesions and scarring are likely causes, there are no proper answers as to why this happens and as such, no suggestions for how to prevent it from happening again. It’s frustrating but it’s also scary knowing that my insides twisting could happen again at any time, and there’s nothing I can do about it.
Bodies are incredible things, but they can also work in mysterious ways, sometimes seemingly without rhyme or reason. Searching for answers is exhausting and you need to know when to not necessarily stop, but to ease off and focus your efforts where they count elsewhere. I’ve had to learn how to come to some degree of acceptance of that fact, while keeping an open mind that things could change in future.
Going Without Is Doable
There are things you can take for granted as having or being able to do in your life. In my case, I’ve had to get used to living without my large bowel. Because of my stoma, I’ve had to learn to either live without some foods I used to love, or to eat them differently. In my pre-stoma life I used to love a home made cottage pie piled up high on my plate or going out for a juicy steak. My stoma unfortunately doesn’t like anything other than very tender chicken. What a prejudiced little so-and-so! Bananas are also out. With other foods I have to be careful, and in the case of many fruits with skins, like grapes and apples, I have to devour them like a dirty little secret in the privacy of my own room so that I can chew them and spit the skins back out. Not really something you can get away with in the company of others.
I can’t do a lot of the things I used to do, from sitting ‘normally’ in a regular chair or walking long distances, to going for a run or working a 9 to 5 job. I’ve found that I’ve had to grieve a lot of these losses and changes, and it’s an ongoing process. But going without is doable when you can find other options or when you can change your perspective on the situation.
Body Hang-Ups Need To Be Binned
It seems strange to write this, but I’d do anything sometimes to go back to the years when spots and fat rolls were my major concerns in life. I would have done things a lot differently. When I was in my teens, the wobbles and weight and cellulite made me very self-conscious, and I’m sadly far from alone in that body-hate experience. When you get chronically ill, the landscape shifts and so does your perspective. My feelings shifted again when I had my stoma, then again when I kept losing weight from every surgery and each hospital admission, then yet again when I developed a lung condition.
All I wanted when my health went down the metaphorical toilet was for my body to work. How it looked, what it weighed, what clothing size it took, all those things were just window dressing. None of it really mattered. I’d give anything to be able to walk back into my old body if only I could be healthy again and not be in constant pain.
There’s so much pressure from society and the media about the ‘perfect’ body, the ‘ideal’ shape and the ‘flawless’ appearance we should aspire to have. The very idea that there’s a goal for how we ‘should’ look is absurd. It’s no wonder countless men and women learn to hate their bodies and dislike their own reflections.
My stoma and other conditions have taught me the value of my body and how to appreciate it for all the incredible things it does every second of the day. You start to see beauty and awe where before you’d only ever see imperfections.
I’ve Had To Become More Assertive
‘Coming out of my shell’ has been a long process for me. I can look back even 5 years ago and be surprised at just how much I’ve changed in that time alone. Since the age of 19, I’d been going back and forth to numerous doctors and specialists, getting fobbed off and finding it incredibly difficult to stand up for myself. They made me doubt myself further and as a patient without authority or any power in that relationship, it becomes tiring and disheartening. Even now I have to fight each and every step of the way.
Somewhere along the lines in these last few years, since the first surgery I had that sent my health spiralling age 26, I’ve been forced to become more assertive. I’ve been able to funnel the anger, frustration and hopelessness and use it all to give me some forward momentum. I’ve learned how to use my voice and to believe in myself when it comes to knowing my own body. I’ve learned to advocate for myself, to be proactive and persevere. It’s not easy when it feels like you keep hitting a brick wall, but your health is worth fighting for. You have the confidence within yourself to be an assertive advocate for your own health, even when you don’t feel like you do.
Humour Isn’t Optional
I honestly don’t know how I would have got this far without having a sense of humour and harnessing the power to laugh at myself. Awkwardness, shame and embarrassment probably would have swallowed me whole a long time ago.
When you can laugh at yourself, it eases a little of tension and diffuses the seriousness of the situation. It can also make a situation easier for those around you. For instance, I make some lame but hilarious quip about my stoma, I’ll come out with a perfectly timed pun about my wee bag after surgeries, or I’ll make a joke when I’ve been very poorly in hospital. Instead of my parents feeling tense and on edge not knowing what to say, or me feeling like I’m going to drown in embarrassment, a little humour makes it all a bit lighter and easier to manage for everyone.
This lightness makes it easier for me to cope with my conditions day to day, and to talk about them on my blog, too. What good is having a stoma bag if you can’t talk about how ‘full of sh*t’ you are or make a ‘sh*t the bed’ joke when you feel like it? There are, of course, still things I can’t talk about, like my first surgery, that I still find painfully embarrassing, or about the issue around not having children, which is just painful. Nonetheless, a little humour can carry me through many things, albeit reluctantly sometimes!
You’re Never Alone Online
To say “you’re never alone” sounds a bit creepy, like there’s someone watching you from the corner of the room. I’m not saying you need to check under the bed, but in the basic sense you’ll find that you’re not as alone as you may feel. The online realm has been a priceless blessing for me and so many others with chronic illness or disability, where those who ‘get it’ are just a click away. I’ve found this ‘spoonie’ community to mostly be warm and welcoming, where you can find a place to be accepted and included without judgement.
Living with any condition can be a very lonely experience, especially if you’ve lost friends, family and employment because of it. From advice, information and support, to inspiration, motivation and friendship, the online world can be an anchor in times of difficulty so that you don’t feel quite so lost at sea anymore.
I’ve Learned How Unique The Stoma Experience Truly Is
Much like everything we go through, each person will have a stoma experience that’s unique to them as an individual.
There are so many aspects that vary between those with an ostomy. For starters, the type of stoma someone has and the reason for why it was needed. Some people consider their stoma to have saved their lives, while it’s merely a reminder of trauma for other people. Then there’s the issue of whether that person faces any problems with their stoma or not; some people get on fine without issue so that they can live a full life, while others can be inundated with stoma problems that have markedly affected their lives for the worse. How stoma life experienced and managed depends on several factors, too. For instances, not just the problems they may face with the stoma but whether they have other health conditions to deal with alongside the stony, their financial situation, living arrangements, support system (or lack thereof), work situation, personality and so on.
The experience is so varied and so complex that it’s just not possible to compare one person’s story to another’s. The way each of us cope is unique, and there’s a lot more to consider behind the mere fact that someone has a stoma bag.
Unfortunately, I’ve found a lot of the informational brochures and healthcare ‘advice’ has been very one dimensional, with blanket suggestions and ‘typical’ experiences portrayed. There’s also a tendency towards significant levels of positivity which can become toxic, especially when you’re struggling and none of what you’re reading seems to apply to you or represent what you’re going through and how you’re feeling.
Each aspect of a stoma journey is unique to each individual. There should be no comparisons and no judgements as to how we cope and how we manage it.
Stoma Stereotypes Suck
When thinking of ‘stomas’, there are a lot of stereotypes and the first words most people think of are ‘colostomy’, ‘elderly’ and simply ‘ew’. Stomas have developed this image of being disgusting and something to be ashamed of and embarrassed about. There’s a lack of understanding about what stomas are in the wider sense, from the types of stomas and reasons someone may have them, how anyone might need one and what life with a bag is really like. They’re not ‘ew’ either, they’re remarkably clean and hygienic all things considered. Okay, so you don’t have the typical ‘normal’ body if you have a stoma, whatever ‘normal’ means, but who cares? If we all looked the same then life would be extraordinarily boring.
It’s time to break down the barriers, bin the stigma and share the unfiltered, honest reality of stoma life, because I bet my backside that more people will be able to relate to that than to outdated, inaccurate stereotypes or toxic positivity.
What stomas actually do is pretty damn amazing. Having a stoma bag is what keeps some people alive, and heck, it’s not every day you find someone that’s able to say they literally see and say hi to their small bowel each day!
Caz / InvisiblyMe
Caz Is A Freelance Writer & runs the blog InvisiblyMe
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Caz
I’m Caz – Blogger, writer, campaigner, tea drinker & over-thinker. I live with a stoma and invisible illnesses, including connective tissue disease, pernicious anaemia, osteopenia and fibromyalgia, making me passionate about raising awareness and understanding of physical and mental conditions. Nice to meet you! I run the blog InvisiblyMe : https://invisiblyme.com