Home General Info & Awareness 9 Things Having A Stoma Bag Has Taught Me

9 Things Having A Stoma Bag Has Taught Me

by InvisiblyMe
A bird's eye view of the SensuraMio Convex stoma bag. One is facing up, the other is facing down, side by side. Overlaid is the post title: 9 things having a stoma bag has taught me.

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. 

A photo of me in a hospital bed after my colectomy surgery.

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!  

A photo of me standing against a beige wall. I'm wearing a black long sleeve top and dark blue jeans, and I have long dyed red hair and a lip ring. My top is hitched up a bit to show my stoma (ostomy) bag, which has a red Hello Kitty cover on it.
A black scroll divider.

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

Caz  ♥

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53 comments

doublegenealogytheadoptionwitness May 26, 2021 - 4:52 pm

Nothing to say. Just feeling respect.

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InvisiblyMe May 30, 2021 - 10:43 pm

Thank you very much, Marilee ????

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B May 26, 2021 - 5:11 pm

Steteotypes really suck, as does the feeling of embarrassment and shame, like you have to justufy, though you’re not sure why. We learn, one way or another. It’s mostly the hard way, though. Alas!

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InvisiblyMe May 30, 2021 - 10:44 pm

Very true, such things are often learned the hard way but I think it also makes us that bit stronger and more resilient as a result. Usually, at least! ????

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Sandee May 26, 2021 - 5:42 pm

I think you’re beautiful and brave. I commend you for letting us know what you’re going though. I can’t imagine, but if it happens to me I hope I have half the style and grace that you do.

Have a fabulous day, Caz. Big hug. ♥

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InvisiblyMe May 30, 2021 - 10:46 pm

That’s very kind of you, Sandee, thank you. I hope you never have to need something like this, though of course it’s wonderful we live in a time and place where such things are not just possible but far more pleasant than they once were. I hope the week ahead is a good one for you lovely ???? xx

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ashleyleia May 26, 2021 - 7:13 pm

Anything that keeps people alive is hella awesome.

That’s tough when there’s one particular thing you can look back at and think damn, if only I hadn’t done that. But it could just as easily have gone in the opposite direction and fix] what it was intended to fix. Hindsight sucks, and I wish our heads didn’t work that way.

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InvisiblyMe May 30, 2021 - 11:02 pm

It really is pretty amazing when you think about it – not just that something like a stoma is possible, but that we’re in the time and place where it’s safer, more hygienic, with better designed bags and such. It’s sadly not the case even these days in other countries, which is absolutely appalling.

Yep, hindsight is a bitch and it can be all-consuming if you don’t steer yourself away from it. It doesn’t help to think that way and yet sometimes you just can’t help it. Damn our incredible brains that are too clever for our own good! ???? x

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Terri, Reclaiming Hope May 26, 2021 - 8:43 pm

Thanks so much for sharing your experience Caz. I know it’s going to help others who have a stoma to not feel lost and alone as you did when you first got yours. You are one of those “bloody brilliant blogging and chronic illness [peope]” who are willing to share your experiences in order to help others. I loved what you said, “There are positives to whatever challenges you face, even if you have to squint to see them.” Not everything is going to be rainbows and roses all the time – we’re human and we face challenges, sometimes on a daily basis. And yes, sometimes things are pretty awful, but as you said, we can take something positive from each challenge and come out stronger in the long run. Brilliant post, my sweet friend! Sending hugs your way!

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InvisiblyMe May 30, 2021 - 11:15 pm

Aww thank you, Terri. I really appreciate that ???? I know I came across posts and pictures from others with stomas when I first had mine and they had an impact on me so I wanted to try to do similar. I also knew I wanted to keep things realistic, and that means it’s not all positive and rosy. Toxic positivity can be so damaging and I’m honestly a bit sick of hearing things like how you can do anything when you have a stoma, you can still eat or wear what you did before, you’ll have a whole new lease on life, etc! It’s just so different for everyone. But yes absolutely, I think there are good things or lessons learned or strength gained even from the dark times or the myriad challenges. Those are important to seek out and appreciate too to bring a little lightness into what we go through. Thanks for the great comment! xx

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capost2k May 26, 2021 - 8:43 pm

Dear Caz, I recall a man who refused to follow Jesus because he thought it was creepy that God would know EVERYTHING he was thinking and doing. Well, Father KNOWS whether or not we admit it. And the amazing thing is He still loves us!
So it’s not just online that you are not alone. No one is ever alone, ever. It’s just that some of us try to pretend at times that He does not see. See Job 31:4 and Psalm 94:7-11.
love and prayers, c.a.

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InvisiblyMe June 1, 2021 - 10:52 pm

While I’m not religious myself, I can understand how your belief in God being there is comforting and reassuring. Thank you for sharing this – have a great week ????

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annieasksyou May 26, 2021 - 8:46 pm

It’s your humour (deliberately spelled Brit style) in the face of all you endure that made me love you from the first time I came across your blog.

Thank you for helping us try to see what life is like for Caz. I know there’s no way for anyone else to truly grasp
It all, but you do an extraordinary job as a translator.

And I know I’m one of so very many who feel enriched by knowing you in this strange but comforting virtual community.

Annie xxx

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InvisiblyMe June 1, 2021 - 10:55 pm

Humour & the ability to laugh at yourself have definitely been vital for me, and I imagine for many others in all walks of life, whatever you go through. As for what you’ve said about me and feeling enriched for knowing me, I don’t quite know what to say. That’s incredibly kind of you, Annie. I’m very glad to have ‘met’ you in the online realm and to be able to call you a friend. Thank you for your kindness ???? I hope the week is a good one for you lovely xx

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Looking for the Light May 26, 2021 - 10:32 pm

Damn Caz, You look great!!!!!!!!

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InvisiblyMe June 1, 2021 - 10:56 pm

Aw thank you lovely – I’m glad you can’t see me 99.9% of the time when I look nothing like these photos at all! ????

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Greg Dennison May 27, 2021 - 2:36 am

This post was beautiful, and refreshing… I like your attitude about about everything.

I think I’ve mentioned before that my brother has a bag, and he has said the same thing about the supportive virtual community. I’m glad you found that.

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InvisiblyMe June 1, 2021 - 10:59 pm

Thank you very much, I’m glad you liked the post. I’m also glad you brother found the online community to be so supportive and welcoming. How long has he had a bag, if you don’t mind me asking? I’m super grateful for the online world and the way it can connect all of us ????

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wanderingmattlarson May 27, 2021 - 3:00 am

This was a terrific post – thank you so much for sharing. I couldn’t stop reading it because I felt like I’ve gone through the same learning process as you (and it was nice to not feel so alone in this kind of battle!). My chronic illness is different than yours, but I felt like I could relate to a lot of what you were saying. My problem is kidney dysfunction, which triggered a mast cell disorder that fried the nerves running from my kidneys throughout my entire nervous system. For the past 3.5 years I haven’t been able to eat a single thing without electric pain coursing through my esophagus and spine. It was funny reading about chicken – that’s pretty much the only thing I could eat for a year without feeling like someone was sticking a live wire into my back. It still zapped me a little, but was SOOO much better than anything else. Even water hurt. I’m totally with you on finding humor in all of it. Even if we had our health, being able to laugh at ourselves is probably the biggest secret to having a fulfilling life. You are very brave and I really appreciate you writing this! Wishing you all the best and I hope you continue to root into your positive outlook!

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InvisiblyMe June 1, 2021 - 11:26 pm

Thank you for taking the time to read and leave this comment – I’m glad you liked the post and could relate, though you I wish you didn’t know what it’s like. I think a lot of what I’ve said here applies to lots of illnesses, conditions and disabilities. I’ve certainly gone through these sorts of lessons with other illnesses, not just the stoma. It sounds like you’ve been through a heck of a lot and I’m sorry the kidney dysfunction and mast cell disorder have had such an awful long term impact. It must be awful having that pain with eating. I get pain when eating but it’s because it goes through to my back where there are metal screws, but I can manage small things without any problem. I should really be more grateful now that at least I can eat my yoghurt and crisps without pain like that! So you’re now a chicken guy, too. Thank goodness for chicken! I’ve also found the fake no-chicken chicken to be okay, it’s the Quorn stuff like chicken nuggets, and it’s very tender so less problematic. You know, just in case you want to shake things up and go for some no-chicken chicken ????

Hold on to that sense of humour, always. And I’m always around if ever you want to chat about anything. Just wanted you to know that. Thank you again for the comment – I really do hope you have some days ahead where you have less pain. Wishful thinking maybe, but it’s good to have a little hope. Until then, stock your kitchen with chicken! xx

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peanutbuttersandwiches_ May 27, 2021 - 3:05 am

Whoaaaaa- this is a fantastic, eye opening post!! And the stoma bag in the last photo is super super super cute <3

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InvisiblyMe June 1, 2021 - 11:27 pm

Thanks lovely, I’m glad you like the post! And the Hello Kitty bag is super awesome, isn’t it? A lovely friend of mine online made it ????????

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tidalscribe.com May 27, 2021 - 8:21 am

A great post that explains a lot of things. There is lots of support for people who fit a stereotype of illness, the common cancer where a neat pathway is laid out for you, or chronic illnesses that are now understood. But others have to find their own way of coping and face up to obstacles that shouldn’t be out in their way.

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InvisiblyMe June 1, 2021 - 11:28 pm

Such a good point about the stereotypes – if you fit the neat boxes then there’s more support & less obstacles, but if you don’t then things get awkward and difficult pretty quickly. I’m glad you like the post – thank you, Janet! xx

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Molly May 27, 2021 - 12:10 pm

This is so beautifully written. You have so much humour and wisdom. Here’s to smashing stigmas. Xxx

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InvisiblyMe June 1, 2021 - 11:29 pm

Hell yeah, let’s smash the stereotypes into itty bitty pieces!
Thanks lovely, I’m glad you like the post ???? xx

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mentalhealth360.uk May 27, 2021 - 12:22 pm

I hear you Caz and I feel your pain. I’m glad you’re able to share your journey with us as it’s important that people are aware of chronic pain and chronic illness, often hidden illnesses.

Since being diagnosed with Transverse Myelitis/MS I have severe bowel problems. Hubby took me to A&E a while back as I hadn’t been to the loo for 21 days. The staff were awful and they gave me two litres of gunky stuff to drink and MORE enemas…….. Nothing happened so they sent me home and the young SHO quipped “come back when you got sh*t coming out of your mouth; then you might have something to moan about!”

I don’t have any internal sensation so although I can’t feel my stomach gurgling in pain, I can hear it (embarrassing), and I can barely bend over to put footwear on as I’m always so swollen.

I get really bad acid reflux and I look 9 months pregnant with triplets!!! Generally I go to the loo maybe once (twice if I’m lucky) a month and it’s so uncomfortable. I hate it and I hate looking so fat! I have been having Acupuncture each week and the first session was great. I was able to go to the loo 3-4 times. But after that……………….. 🙁

Initially the MS team suggested a stoma bag but they don’t think the constipation’s bad enough. I’m a real tizzy cos I’m not sure how I feel about that………. My youngest son said “Mama, it wouldn’t be so bad, they’re really small etc……..

Like you, all I can do sometimes – is laugh 😉 x

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InvisiblyMe June 1, 2021 - 11:40 pm

Thank you very much, Twin Caz, I’m glad you like the post.

I think a lot of the lessons here can be applied to different conditions and illnesses and disabilities; I’ve certainly learned them not just with a stoma, so I was hoping a broader range of people could relate to certain things. I’m so sorry for what you’ve been through. It must have been horrendous not going to the loo for so long (I still remember those days myself, not fun) and then getting horrible staff in the hospital. I can’t believe what that person said to you! Actually no, I can believe it sadly. I’ve personally had a lot of bad experiences in hospital with misanthropic staff, far from the angel stereotype we hear of with the NHS sadly.

Has anyone ever given any ideas as to what causes the constipation? I struggled since age 19, when it seemed to happen overnight, to age 26 (the time of the first surgery that sent everything downhill). Sadly it’s an under appreciated condition and medical staff will probably never think it’s ‘bad’ enough or appreciate what it’s like to live with. Without any internal sensation I’d question whether the bowel lacks peristalsis, but to have gurgling is curious. Then again, I imagine you probably (maybe?) take lots of laxatives which can replicate all the gurgling and pain to make it seem like your bowel is actually doing something when maybe in reality it doesn’t do anything on its own.

With the stoma and you saying you don’t know how you feel about that, do you mean you’re not sure you agree with the MS team that the constipation isn’t bad enough, or you’re not sure you’d want to go the stoma route? “Want” is the wrong word there, but you know what I mean. It’s hard to really say what having a stoma is like when it’s so different for everyone but I’m always around – if ever you want to talk or ask questions or anything at all, just drop me a message. No pressure, but I’m here if you do. xx

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Kymber May 27, 2021 - 5:38 pm

Thank you, Caz, for writing this so beautifully. You are such an inspiration to me and lovely inside and out. 🙂

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InvisiblyMe June 2, 2021 - 5:43 pm

Aww that’s so kind of you, Kymber ???????????? Sending hugs your way xx

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Ann Coleman May 27, 2021 - 7:34 pm

Thanks for sharing this! It’s way past time for the stigma about stomas to be removed, as well as the stereotypes. As you say, there are many different types, many different reasons for getting one, and many different experiences for people who live with them. Being told “you’re not doing it right,” even indirectly, never helps!

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InvisiblyMe June 2, 2021 - 5:50 pm

I absolutely agree. There’s so much variation and countless differences in the stoma experience – much like an experience with any health condition or life event – that renders generic advice or ridiculous stereotypes useless. I also find the stereotyping and positivity can become toxic and too many people probably feel they’re not coping well or not doing things ‘right’, which is so detrimental and unhelpful. Thanks for the great comment, Ann! ???? x

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Janet B. Pearson May 27, 2021 - 11:56 pm

Thank you for sharing this! I cannot imagine the things you go through.

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InvisiblyMe June 2, 2021 - 5:59 pm

Thank you for reading, Janet. I’m glad you like the post. I’m sure plenty other people have it far worse than I do, but I think it’s important to give an honest look at how the experience varies between people ???? xx

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Chen Song Ping @ TPTan May 28, 2021 - 3:17 am

Great post! I will re blog some of your points about having a stoma and stoma-toileting.

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InvisiblyMe June 2, 2021 - 10:53 pm

I’m glad you like the post – and thank you, that would be lovely if you’d like to share the post ????

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Cynthia Covert May 28, 2021 - 11:14 pm

I love it all!!! And you are right, things can and will get worse, got have a sense of humor, and learn to love our bodies even if they are all jacked up. You are strong and beautiful, keep sharing!

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InvisiblyMe June 2, 2021 - 10:56 pm

I’m really glad you like the post – thank you, Cynthia! ???? I think the more we share, the more the reality of different experiences is acknowledged. I’m all for positivity, but not when it’s toxic. We need the ‘real’ experiences we can relate to. I hope the rest of the week treats you kindly xx

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The Oceanside Animals May 29, 2021 - 6:39 pm

Charlee: “We know these are things you didn’t want to learn, but you have handled them with admirable aplomb.”
Chaplin: “We are very proud to have you as our friend!”

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InvisiblyMe June 2, 2021 - 11:26 pm

You’re right, they’re things nobody wants to have to learn. I don’t feel like I handle it all with much grace but knowing that you think I do means a lot. I’m glad to have you as my friends, too! ???? I hope you’re behaving for dada! xx

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James Viscosi May 29, 2021 - 7:49 pm

I’m glad that you’ve been able to keep your sense of humor! When I was in the ICU after “The Event”, once I was, you know, conscious again, the nurses remarked that I seemed to still have a sense of humor about the situation, and said it would help me get through it. Your joke about being a “Gucci Bag model” reminds me of when I referred to my mobile catheter bag as a “hip flask”, a remark that almost laid out my nurse in Med-Surg. So keep cracking those jokes, Caz! 🙂

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InvisiblyMe June 3, 2021 - 8:40 am

Those nurses were right, that sense of humour counts for a lot in getting you through even the inconceivable. I love your playful attitude and ability to see the funny side – you make a difference to others and all those who read your blog, as to yourself, James. If I end up with a catheter again, which I guess is almost a guarantee, I’ll remember the hip flask ???? xx

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mistermuse May 29, 2021 - 10:29 pm

I applaud how you’ve “learned to be more assertive.” On more than one occasion over many years of experiences with illness (both my own and family members), I’ve found that there are good/competent and bad/incompetent people in the medical profession as in life, and you can’t just make serious life repercussion decisions on blind faith in you doctor or surgeon. Do the research and become as knowledgeable as possible about.alternatives. This saved me from (what turned out to be) unnecessary open heart surgery, and over a decade later, I’m healthier than I was then.

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InvisiblyMe June 3, 2021 - 8:43 am

I agree with you there on the competent vs incompetent, not just the compassionate vs the misanthropic. I was naive when I had my first surgery, thinking the stats of surgeries previously done and the prestige meant a surgeon was a god to be trusted. How wrong I was. I’m glad you were assertive and did your own digging to avoid the heart surgery. It’s nice for a change to be able to look back and say there was a good outcome in hindsight with how you’re now healthier than you were then, and I’m very glad for you! Thank you for sharing this ????

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Jo (a Rose Tinted World) May 30, 2021 - 12:40 pm

This is a such a terrific post Caz. And hopefully it will help people out there who are going through some of the same things you have done, whilst realising that every case is different.

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InvisiblyMe June 3, 2021 - 8:49 am

Thank you very muchly, Jo. I’m glad you like the post and I really do hope it could help even one person in a tiny way. That would be wonderful ???????????? xx

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Despite Pain May 30, 2021 - 7:44 pm

Where would any of us be without humour?
I love that you are open and honest about this. People need that. Life is far from a bed of roses for you or anyone else with a stoma but people do feel alone out there with it. The awareness you bring, the openness to try to remove the stigma must really help those people. And yes, let’s face it, it’s a freaking amazing way to be able to keep people alive. My sister had a colostomy after an op for colon cancer went wrong. She only needed it short term while her colon healed, but it gave us all an insight into life with a bag. I believe humour got her through that too.
Excellent post as always, Caz.

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InvisiblyMe June 3, 2021 - 8:52 am

You’re right, honesty & humour are both needed and I think they can go hand in hand at times. I think with all the stress, the fear, the shame and everything else, we can lose sight of how things like a stoma are actually pretty amazing and keep people alive. I’m very sorry for what your sister went through but I’m glad they were able to do it temporarily to allow the bowel to heal and that it was successfully reversed. That’s incredible. It’s a lot for a person to go through, but hopefully all worth it in the end and the ability to find the lighter side helps you get through it. Thank you for sharing this, Liz ???????? xx

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salsaworldtraveler June 4, 2021 - 2:36 am

Your condition presents many challenges. This post and your other work shows that you have handled the challenges terrifically. I hope that medical science may one day make your life easier. Thanks for sharing your story and inspiring others with your amazing attitude!

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InvisiblyMe June 9, 2021 - 5:15 pm

Thank you for such a kind comment – I really appreciate it. I’m very grateful that medical and technical advances already make the experience better than it once was, and that countries like mine at least have access to the devices and care we need. Too many unfortunately don’t have access even to the proper bags, which is just awful and shouldn’t happen in this day and age. Thank you again ????

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Cheryl, Gulf Coast Poet June 14, 2021 - 10:52 pm

Caz, you have shed light on experiences most of us are totally unfamiliar with. The writing is brilliant and good-humored. <3 Have a great week!

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InvisiblyMe June 15, 2021 - 5:17 pm

Aw thank you very much, Cheryl ???? I really appreciate you taking the time to read & leave your lovely comment – I hope the rest of the week treats you kindly! xx

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Holly July 9, 2021 - 4:30 pm

Caz, I admire you so very much. The way you’ve shared your story here is heartwarming, relatable in many ways, and far more powerful than you might realize in this moment. I 100% guarantee that many other men and women who are faced with needing a stoma and feeling lost in the process can read these words to find comfort, hope, and understanding. Bravo! My heart breaks that you ever had to go through this but my goodness – you are bringing purpose from your pain! ????

I wholeheartedly agree with you about hanging up body hang-ups for good. You are simply stunning, my friend – inside and out. You’re absolutely right – instead of placing our focus on some superficial ‘quality’ that has been skewed by a twisted media; why not shift our focus onto the incredible things our bodies enable us to do each and every day? I can’t even begin to imagine the difference this one change would make in our lives.

Hearing how you’ve been treated by some in the medical community makes me both angry and sad. I’ve never quite understood how someone could go into a field that was designed for compassion and care with the attitude of, “well, whatever, it makes money.” Good for you for standing up for yourself and your experience under their care. If I could be there with you, advocating for you, I would. No one should ever feel alone!

Sending you so much love across the miles, Caz. Thank you for your courage and honesty. You make a difference every single day by just being YOU. ♥ I’ll be sharing this now!

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