14 Things I've Learnt in 5 Years with a Stoma
A sprinkle of wisdom for everyone
Five years ago, on 16 July 2018, I was being wheeled down for my first open abdominal surgery. I didn’t know that was true. It was a sweltering Monday. I’d been sold the ideal of keyhole, a swift recovery, and that elusive life free from inflammatory bowel disease.
I didn’t know all the truths I know now.
Looking back at my loved ones’ heart-breaking stoicism as my bed trundled away from them down a dimly-lit corridor, I distracted my mind with the image of the black marker “X” on my distended stomach.
‘You’re so tiny,’ the nurse had said. ‘We don’t have many options for your stoma position.’
‘I guess it’s high-waisted jeans from now on, then?’
She nodded, offering a tight smile.
‘No worries,’ I said. ‘That’s kind of my style anyway.’
Now, five years, two surgeries, countless doctors, lawyers, and meditations later, I’m ready to recall some of the things I’ve learnt.
Whether you have a stoma or had to Google that word to even read this, I think these lessons could apply, in varying degrees, to everyone – even if that just means understanding more about your ostomate buddy.
So, here they are. Fourteen things I’ve learnt.
1. No-one is paying as much attention to me as I am
Wear the tight trousers. Wear the form-fitting dress. Most people don’t notice my sweet little pouch getting larger, and the rest simply don’t care.
You cannot, and should not plan your life around the one percent of morons who might, sometimes stare.
2. I’m still a regular twenty-something woman
Post-surgery, I think people expect your bodily insecurities to suddenly revolve around your new stoma bag and gnarly, keloid scars. But alas, dear friends, I am a millennial woman, raised within a body-critical culture of all things feminine.
Prior to my diagnosis of ulcerative colitis, I gave zero thought to the possibility of a stoma bag, or the general existence of ostomies. Therefore, I am rarely bothered by my bag or scars. However, I still fall into the trap of obsessing over cellulite and stretch marks.
Reminder: Bridget Jones was NOT fat, and there’s nothing wrong with that anyway.
3. It’s my story to write
When it comes to medicine, we often hear about extremes. There’s the Matthew Perrys’ of the world who claim to experience poo-namis twelve times a night, and regularly end up with shit on their faces (how?!), or the Perfect Pollys who can’t even see their scars anymore, are back at work three days after surgery, and compete in international body-building championships. Neither of these narratives are necessarily false.
But I reckon the 95% sit somewhere in the middle.
Have I had leaks? Yes.
Have they been catastrophic and somehow ended up on my face? No.
They’ve simply ruined a decent pair of pants, and I’ve calmly cleaned up and changed in the bathroom.
Perhaps my experience is better than average - who knows?
But physical complications aside, you live the story you tell yourself. If you tell yourself a stoma bag is a terrible burden, ring-fenced for those over 70, you will believe that, and feel like a social pariah.
If you tell yourself only chosen, awesome people are allowed to have stoma bags, you’ll believe that too.
If you’re a Neutral Nancy, like me, who had no thoughts of stoma bags before surgery, you won’t waste too much time thinking about it.
It’s true that doctors will project their beliefs about your particular demographic onto you. But you don’t have to listen. You may be told bikinis are off the menu. But you are allowed to roll your eyes, book a flight, and get your yellow polka dots out.
4. Consent is my best friend, and yours
I used to accept medical opinion as gospel. Now, I aim to almost match my consultant in knowledge of my condition ahead of an appointment. I’ve learned to ask questions, be a Nuisance, offer opinions, and express discomfort when it crops up.
Don’t assume your doctor is all-knowing, all-caring, and without flaws or agenda. You are the expert in you. Medical decisions should not be made without your full support.
My first surgery was negligently delayed, due to a particular surgeon’s concern for his wife’s planned C-section the following week. These days, I’m healed enough to speak of this conversation without anger. It’s almost funny, in a dark kind of way; how I comforted him about becoming a father, while I was creeping closer to death under his care. Classic Aimz. Classic people pleaser. Don’t be like old Aimz.
Advocate, push, be the most knowledgeable pain in their arse ever.
5. Anything can become the norm
If I’d thought about it much prior to 2018, I would’ve presumed having a stoma bag would change my life beyond recognition, and limit me in a thousand physical and mental ways. But, out of all the ways my various conditions impact my life, my good old ileostomy is by far the easiest to manage.
It has become so normal to go to the toilet standing up.
It has become so normal to buy high-waisted underwear (and very 1950s fabulous, darling).
It has become so normal to carry V.I.Poo, and a spare pouch in my handbag.
My stoma does not prevent me moving through the world like anyone else. It simply requires a little more organisation.
6. Surgery is a treatment, not a cure
The cure myth still persists amongst less informed doctors. Ignore it. I still have ulcerative colitis. Pun aside, my immune system is still a bit of an arsehole.
I still require medication to keep my inflammation down, and prevent the cyclical downwards spiral. However, I will say that I am more in control over the remaining colon now. Dietary and lifestyle changes are finally impacting me in a positive way.
Basically, surgery can help.
Surgery does not eliminate disease.
7. I have options, and I’ve got this
The first year of stoma life involved a lot of trial and error.
My advice to ostomates? Make a choice to view the products your hospital provides as samples. That’s all they are.
There are multiple companies producing stoma bags, and all the thing-a-bobs that come with them. Everyone’s skin and requirements are different. My favourite product might be itchy as hell on you.
Order samples from Salts, Coloplast, Hollister – try them out, and choose accordingly. On a similar note, there are various supply delivery companies around, so unless you live in the desert, you don’t have to stick with one that only delivers between twelve and two on a Tuesday. I promise.
8. I can eat most foods, as long as I chew them a lot
Yes, I’m still gluten free (separate issue).
However, when sent home from the hospital as a new ostomate, you’re given a very restrictive and beige list of foods to adhere to.
This is important in the early days to avoid blockages whilst you’re healing internally. But a few months later, I began experimenting, finding my groove with different foods again.
These days, I’ve come to learn which things don’t vibe with my small intestine (bloody carrots), and the things I can now eat, provided I chew them well. I’m talking popcorn, nuts, salads, onion.
My plate is guaranteed to be the last one cleared away, but in five years, I’ve never had a single blockage.
Hallelujah.
9. I don’t have to pay for prescriptions
A permanent stoma is listed under the conditions which qualify for a medical exemption certificate. It took me a second to catch onto this.
I applied for a certificate through my GP a few years back, and now, I don’t pay for any of my prescriptions.
Praise be.
I’d have otherwise spent a small fortune.
10. It is not my responsibility to be an advocate
There are plenty of fabulous people doing this on Instagram, but it’s so not necessary to strip off and get your bag out if you aren’t comfortable doing so.
You can pay it forward, but you don’t have to.
You can attend support groups, require help, or mentor others. Again, you don’t have to.
You only have to exist in your body.
That’s enough.
11. Stoma products are pretty great
Filters, materials, and design make modern stoma bags incredibly discreet, both visually and nasally. No-one can smell the contents of your bag, in the same way that no-one can smell the inside of your colon.
Grim imagery, but very true.
12. Language matters
But annoyingly, many use it interchangeably.
Colostomy seems to be used as a catch-all description for literally any stoma in the entertainment industry.
FYI: I have an ileostomy, and those with bladder conditions may have a urostomy.
Lazy “comedians” have a habit of equating stoma “colostomy” bags with old age, and often make quips that literally don’t make any sense.
I personally choose to laugh at the idiocy, but Jesus, surely you could be wittier than that?
13. I am Lucky
Residents of third-world countries, ostomates living in poverty, and displaced individuals can been forced to construct DIY stoma bags – increasing their risk of infection and skin complications.
I remember reading about one lad who adapted a washing machine hose and water container to create a device that would replace a stoma bag, due to lack of resources. Clever - absolutely. But this should never be necessary.
This is why, every Winter, I send off a big box of spare stoma supplies to the Get Your Belly Out Christmas Appeal. They distribute stoma supplies otherwise destined for landfill to countries most in need.
I have everything I need and will never take that for granted.
14. It’s never me
When you’re looking around the room, nose scrunched up, attempting eye contact with a few suspects for the third time since dinner?
I’ll be relaxing in the corner with a smug smile on my face, secure in the definitive knowledge, it definitely wasn’t me.
As it stands, I have no plans for 16 July: my stoma-versary. Perhaps I’ll do something celebratory. Perhaps the day will pass me by without a second thought.
Whatever I do, I’ll be doing it because my stoma exists.
That little red raspberry on my belly that somehow saved my life.
Cheers to that!
Just read this Amy with lots of useful advice Did not know for example there was a charity sending stoma bags abroad / a question we have asked many stoma nurses and suppliers and always had a negative reply
Think you are amazing dealing with this x
Brilliant article Amy,well done.xx