9 Things Having A Stoma Bag Has Taught Me

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Stoma Bag Life : Lessons Learned

Having a stoma changed my life. It wasn’t something I wanted & it wasn’t an option. A stoma bag just had to happen, and it takes a while to readjust your mindset in this new landscape. While the stereotype is for women to have a wardrobe full of handbags, mine is full of stoma bags. While the stereotype is for someone my age to be in their own property, with a partner, good job, social life & maybe kids, I have none of those things. Chronic illness changes the landscape beyond recognition.

I’ve had numerous problems with my stoma but the whole experience has been, and continues to be, a giant learning curve. There are positives to whatever challenges you face, even if you have to squint to see them. Here are a few things having a stoma bag has taught me.

1. “It Can’t Get Any Worse” Are Dangerous Words

I’ll always regret saying this. When I had chronic constipation, I thought things were tough and I was getting frustrated with nobody being willing or able to help me. I felt so embarrassed and avoided telling almost anyone, which was hard in itself. I paid privately for a surgery that should have helped, but it turns out I should never have had it. I’ve been left with an ileostomy and no large bowel (colectomy), along with countless new health problems I never had before that first op, from chronic pain and nerve damage to autoimmune disease and chronic migraines. I’ve been watching my health going down the metaphorical toilet and wishing I could just go back in time. Looking back, it wasn’t that bad. I could have lived the rest of my life like that. I had a partner, a job, energy, a social life, a future. 

Even after the stoma, I thought things were difficult. Difficult to get my head around the stoma and the change that involved in my life and to my body image. But things just got worse, both with the rest of my health and the fact I keep having ongoing problems with the stoma because my small bowel likes to dance the twist.

I’ve struggled with acceptance of the bag, and I’m not sure I’ll ever fully accept it, because of the reasons why I needed it in the first place. Years of being let down and fobbed off, then a surgery that left me far worse off and in need of a stoma, make acceptance difficult. This shouldn’t have happened. It’s different for everyone, and that involves why you needed the stoma, how you cope day to day, what support system you have in in place, what other health conditions you also deal with, whether the stoma has resolved the bowel problems or generated new ones, etc.

I’ve learned that things could always be worse than they are now, no matter how bad we feel they are. I’ll never make that mistake again. 

2. Answers Might Be Elusive

My insides enjoy dancing along to music I can’t hear, which is pretty inconvenient. My small bowel twisting on itself is insanely painful and it’s sent me to the emergency department on countless occasions now. It’s also potentially dangerous, so much so that last year I would have died without emergency surgery, all because my guts enjoy the Tango & Jive. There are some weak theories as to why it happens, like the lack of large bowel and the numerous abdominal surgeries I’ve had resulting in scar tissue, but no definitive explanation as to why this happens. 

It’s not something that can be predicted and it’s not something I can do anything to prevent. I’m the sort of person that likes answers and who likes to be pro-active, so it’s not an easy lesson to learn. At all.

Sometimes there’s no rhyme or reason, things just are the way they are and there’s nothing you can do about it. 

3. I Can Cope Without

I can manage without my large bowel (albeit grudgingly), and because of my stoma there are also a few foods I’ve either had to learn to live without or learn to eat differently, too. Years ago I used to be an avid meat-eater who enjoyed tucking in to a home made cottage pie or a delicious hot dog. It’s a good job I like lean chicken because that’s pretty much all I can do these days meat-wise as my stoma is prejudiced against other meats. It’s not a fan of bananas either, which makes me sad. Other fruits have become a dirty little secret. Lush green apples and grapes aren’t for public consumption as I have to spit out the skins after chewing. How very classy!

I can’t eat meals like I used to in terms of size, either. It’s not just for the sake of my stoma but the pain on eating what I’d consider a ‘normal’ sized meal as I used to like bigger portions. The pain in my tummy seems to go right through to my back and it’s a sickly horrible feeling, with a metallic feel to it, which I now realise is probably the pressure on the metal tacks in my back.

It’s a case of managing without certain things and adapting in other instances. You might not imagine being able to do without something, whether it’s your large bowel or hotdogs, but you do and you keep going.

4. Body Hangs-Ups Should Be Hung Up For Good

When I was in my early teens, fat rolls, wobbles and cellulite weren’t my friends. When you get sick, things change. When I had my stoma, things changed again. All I wanted was for my body to work, and I’d give anything to go back to that old body if I could just be healthy again. We get so much pressure from the media and society in terms of how we should look and the ‘ideal’ body appearance, that it’s no wonder so many men and women don’t like their reflection.

These days it’s about appreciating and loving your body for the amazing things it does, being grateful, and seeing the beauty in places where you never did before.

5. I’ve learned How To Be More Assertive

7 years of being fobbed off and let down by countless doctors and specialists left me exhausted. Even with my stoma, I’ve had to fight my corner when I’ve ended up in A&E with nurses who don’t care and medical professionals who refuse to listen. When I was much younger I was very quiet, shy and reserved, going through years of social anxiety until I started to ‘come out of my shell’, so to speak.

It’s only been these last few years of caring a little less, having faith in myself, and trusting that I know my own body, that I’ve been able to become more assertive. Having to keep pushing and fighting is exhausting, and sometimes I do just want to give up. Sometimes it takes hitting rock bottom and having some time out before you can pick yourself back up and keep going.

I’ve had to fight each and every step of the way. These experiences have made me more able to explain myself, they’ve made me more knowledgeable about health and my own body, and they’ve made me determined to persevere in standing up for myself. 

6. Humour Isn’t Optional

I don’t know what I would have done without humour and the ability to laugh at myself. I think I would have been swallowed whole by shame and embarrassment and awkwardness a long time ago. The ability to laugh isn’t always easy, but I find it works wonders for diffusing the tension and lightening the situation to a more tolerable level. 

It also makes my parents feel more comfortable when one of them might have put their foot in their mouth about something, especially in the early days. I can’t go more than 24 hours without cracking some kind of pun, quip or politically incorrect joke about my two arses. I’ve done the same when I’ve been particularly poorly, when I’ve been back to A&E or when I’ve come home with urinary catheters, which eases the sense of heaviness or embarrassment. 

A little lightness can make some things easier to manage. If I can’t make a “shit the bed” joke after a bag leak, say that I’m literally “full of shit”, or talk about being a Gucci Bag model, then I’d struggle to ever be accepting or open about what I deal with. Sure, there are still things I can’t discuss, like my first surgery, but it’s baby steps. Humour carrier me through, even if sometimes it takes me kicking and screaming!

7. You’re Never Alone Online

It sounds a bit creepy to say “you’re never alone”, as though there’s someone always watching you, but in the basic sense there will always be someone out there who ‘gets it’ and shares some similar experiences. I didn’t know a single person with a stoma when I had mine. I felt pretty lost and alone, filled with guilt and shame by the fact that I was the first person in my family to get sick and lose my job. I didn’t know anyone with the symptoms and illnesses I had, and I felt like I was living in an alternate reality so different from anything I could have ever imagined that I’d never find an anchor. 

Then I went online and wow, what a bloody brilliant blogging and chronic illness community there is out there! For the most part, you’ll find a welcoming, compassionate and empathic community waiting to embrace you, a tribe of people who live the stoma life, or the chronic pain life, or the chronic illness life. A place where you can feel included and accepted, without judgement. Whether it’s advice and information from charities and companies, Facebook groups, forums or blogs, there are ways to reach out, get support, give support, make friends, and anchor yourself so that you don’t feel quite as lost at sea anymore.

8. I’ve Learned How Unique The Stoma Experience Truly Is

I’ve posted previously about how the stoma experience is unique to each individual. There are differences in the types of stomas and the reasons behind needing them, the experiences each individual has and the problems they may face. The way we cope is unique and can’t be compared to other people. The minimal information I was given when I had my stoma and a lot of the promotional material I’ve seen since has portrayed typical experiences and an exuberance of positivity, making us feel as though we ‘should’ all be capable of managing and experiencing stoma life in a similar way. There’s also this pressure from toxic positivity and if we don’t live up to that, we feel even worse. 

The entirety of the stoma journey is unique to that individual – there should be no judgements and no comparisons for how we manage it.

9. Stoma Stereotypes Suck

The stereotypical words associated with stomas tend to be ‘colostomy’, the ‘elderly’ and ‘ew’. They’ve been viewed as something disgusting, something to be embarrassed about and ashamed of. The reality is far from the stereotype. There are many types of stomas, not just colostomies. Anyone of any age might need one for a myriad of reasons. They’re not ‘ew’, they’re actually pretty damn hygienic for the most part thanks to modern appliances. Sure, as someone with a stoma you may not have the typical ‘normal’ body but who cares? Life would be unbelievably boring if we were all the same. 

Let’s break the mould, screw the stigma and share the honest, unfiltered reality because I bet more people will relate to that than to toxic positivity or to some outdated stereotypes in the mass media.

What stomas do by keeping people alive is pretty freaking amazing. It’s also not everyday that you find someone who can say they see and say hello to their small bowel each day!  

Do you have a stoma bag – or any kind of illness/pain/disability – that have have taught you similar things?

Caz  ♥