Some people get a day. Some may get a week, a month, a year. Others may get no warning, simply waking up with a new life.
From IBD and cancer, to colonic inertia, pelvic floor dysfunction and bowel trauma, stoma surgery is undertaken for various reasons. It may be temporary, with the hopes of being reversed at a later date, or it may be permanent.
One thing remains constant: having a stoma is a big deal, though the experience of life with a stoma is as different as every individual is unique.
Pre-Op : Ignorance Is Bliss?
Although I had forewarning and agreed to the surgery, even as I was being rolled in to the operating room my brain hadn’t quite absorbed what was happening. I talked to my parents about it as though it were a clinical rather than personal issue, as though it were happening to someone else. While my parents were upset, I was busy preparing for surgery and focusing on the practical things I could do. It was my third operation but it didn’t feel any easier to get my head around.
In some ways, there was an element of ‘ignorance is bliss’. I didn’t want to know too much; just enough to prepare myself, not too much to scare myself.
Immediate Post-Op : The Aftermath
Fast forward to that day, and I woke up with a clear bag attached, rather than the opaque ones you tend to use normally. This is to allow nurses and doctors to see what’s happening in there. For me, it was a horrifying shock. Nurses came to empty the bag while I was in bed, too exhausted to move. IV morphine held back most of the pain but I was unable to leave the bed and sick from the meds, so I was pretty out of it for the first day and most of the second, too. When the bag was emptied and poked and prodded, I looked the other way. The sounds and smells of that ward made me want to go home to take a hot shower and sniff a vanilla candle for an hour. The next day the doctors said things were looking good with the stoma and I could try a little bland, low-residue food and liquid later that night. The bag was emptied. I looked away. I got out of bed tentatively and held onto the bag for fear it would fall off because it felt so alien. After the second night, while still feeling awful, I wanted to go home. My head hurt. I wanted fresh air. I think I was there for four nights but it’s all quite a haze and a lot has evaporated from my memory.
I think it was day 3 that I made myself watch while a stoma nurse changed the bag. I listened as she explained a few of the basics and how she would leave a package of supplies for me. A starter kit, for my new life. She said she’d be back the next morning to teach me to change the bag, as I could go home soon. The next day there was no stoma nurse, and when nobody turned up the morning after that I was getting restless. Gone was the girl who couldn’t face looking at the bag, who didn’t want to accept having it. I wanted out of there. It wasn’t me and this ‘thing’ I had on my stomach anymore. It was “me and my bag are busting out of here and going home”!
Everyone copes with what life throws at us in different ways. I tend to keep myself busy and focus on the things I can affect and control. So when I got home, I focused on the practical things. I sorted through my stoma supplies and visited my friend Google for tips and information. I put my energy into trying to de-stress, to get into a routine with checking, emptying and changing the bag, and into eating small amounts regularly throughout the day. I made it through the first day, and then the day after, by focusing on these small, manageable steps.
And these small steps carried me through the first week and beyond. I survived, I coped, I started to get used to having a stoma. It wasn’t a miracle realisation. It wasn’t something I accepted, but it was something that wasn’t as alien to me any more.
Getting Into The Swing Of Things : Slow Steps
You get used to it, bit by bit, in your own time. But just when I was getting into the swing of taking care of the small, practical steps, the stoma life throws you a curve ball. Leaks in the night. Skin irritation. High output. Low output. Pain. Discomfort.
And somehow you deal with these things, too.
Then there’s the first trip outside and the panic of what to do when the bags needs emptying or if you think there may be a leak. Wanting to cover it up and finding your clothes aren’t comfortable or suitable for your new addition. Worrying others can hear those odd sounds it makes at the most inopportune of times. Wanting to travel but not knowing where to start now you have so much to consider with supplies. Needing to expand your diet and fearing food that could cause a problem. Not knowing whether to tell others about your stoma, or what you should say, worrying about how they would react.
Fast forward and I’m shockingly nearly at the two year anniversary of having a stoma. Since then I’ve been through a colectomy to have my large bowel removed. I’m now waiting on stoma revision surgery as my small bowel kinks (causing agony, and an obstruction which has led me to A&E various times) and consultations for another surgery on top. I’ve been dealing with other worsening health conditions. I’ve been on my first holiday abroad, I’ve worn my first bikini, all with a stoma. I’ve lost my job, but I’ve found fulfilment through blogging. I’ve laughed, I’ve cried, I’ve been grateful and I’ve struggled.
Getting Used To Life With A Stoma : A Continual Journey
Adjusting to life with a stoma happened without too much thought. When you have to deal with something, you may just surprise yourself with how resilient you can be. I focused on small, practical steps. But I neglected to appreciate the emotional impact. I had a few occasions early on where I would suddenly break down, sat on my bedroom floor in a mess of tears, pain and heartache. I didn’t know what to do with myself. I felt like a monster because I didn’t know how to talk to myself with compassion. I lacked reassurance that I was still the same person, that everything would be okay. I didn’t have a social life to buoy my spirits. I had to learn to do that for myself. I also had to learn that it was okay to experience whatever I was feeling and that a good cry can be cathartic.
The practical aspects that at first felt so alien, like changing the bag or ordering supplies, become a little easier in time. You learn about hernias and preventing them. You get used to having to be awake in the middle of the night to empty the bag, to scouting out the nearest toilets and to having to take a spare bag with you when you go out. Leaks and blockages and working out what food is okay and what food your stoma hates are all things that can still trip me up, but they become more manageable, less daunting over time as you realise that you can handle whatever happens.
Some days I feel ugly, useless, awful. I still have struggles with other “invisible illnesses” that brings me town, especially the pain and exhaustion with fibromyalgia. I still have issues with my weight and body image, and I’ve put on a lot of weight since the picture I’ve included in my blog post. Other days I feel a sense of resolve and a greater appreciation for my body.
You ride out the tough days and hope to have less as time goes on. You come to see the lessons you’ve learned and the things you’ve gained, rather than the struggles and sense of loss, even though it’s important to acknowledge all of those things rather than pretend you don’t feel them.
I’m not a woman with a stoma. I’m a daughter, a friend, a writer, a woman with a life that includes a stoma. It’s a part of who I am, but it doesn’t define me, nor do my other ‘invisible illnesses’. I’ve not fully made peace with the reasons behind why I ended up being an ostomate. But I’m living, I’m learning and I’m managing each day.
It’s a continual adjustment to a new life, and I wouldn’t be here without the stoma. It’s not a competition and there’s no rush to adjust. Just one foot in front of the other, at your own pace.
This post also features in a slightly shorter form on the Talk Health website.
I obviously can’t cover everything I’d like to in one post, but I hope it gives you a general idea, whether you’re pretty much new to what a stomas is, have one/are due to have one yourself, or perhaps know someone that does.
Thank you for reading.