Home General Info & Awareness Stoma Life : A Unique & Individual Ostomy Experience

Stoma Life : A Unique & Individual Ostomy Experience

by InvisiblyMe
A photo of me to the left wearing a black patterned long sleeve top and black shorts with leggings. I have long dyed red hair. I'm lifting my top to show my stoma (ostomy) bag, which has a Hungry Caterpillar design. To the right is the title: 'Stoma Life - A Unique and Individual Experience.' At the bottom is invisiblyme.com.

For this year’s Ostomy Awareness Day, I want to bring ashine a light on one of the issues that I think is important when discussing stomas : Each individual has a unique story and a unique experience of stoma life. 

When thinking of stomas, most people think of a colostomy. It’s the standard default that gets mentioned in the media or in films and TV, usually if there’s a joke about someone with a bag. There’s so much stereotyping and lack of knowledge around ostomies, but thankfully it’s starting to change as more people share their stories. No matter what the general advice or theorising is, every experience of having a stoma (or ‘ostomy’) is unique. 

The Reasons For Having A Stoma

The typical thought here is that most people with a stoma have Crohn’s or ulcerative colitis, some form of IBD that means they’ve had to have a bag. There’s actually a multitude of reasons someone might have a stoma, including, but not limited to, the likes of trauma to the bowel, neoplasia, cancer of the bowel/bladder/rectum, damage from mesh surgery, diverticulitis, and so on. Damage or obstruction in the bowel or around it might mean a stoma is required. 

For some people it’s a decision they have to make, for others there is no decision, a stoma is the only path left to take. You might get a few days or months to start to come to terms with what’s going to happen, or you might just wake up after surgery with one. Stomas don’t discriminate, they could happen to anyone of any shape, religion, race or job title. They can be formed on everyone from babies to the elderly. There’s not one ‘type’ of person with a stoma. 

In some cases the story of what caused the need for an ostomy is more straightforward. Something specific has caused damage and a stoma has been made. In other cases it’s a bit more complex. I have a stoma because of a surgery that did damage (something I’ve never discussed in this blog), but I then had to have my large bowel removed because it was causing problems, at which point it was found my bowel had died and had no peristalsis. There wasn’t a choice in having a stoma, I would have eventually died without it. 

Whatever the reasons, there’s an emotional impact. It’s not always easy to accept needing something like this, perhaps all the more so if it’s going to be permanent. Some people may have come to the end of their ropes with their bowel problems and be extremely grateful that their bags have given them their lives back, but for others the bag is a constant reminder of the trauma they’ve faced.

I personally have found there to be a sense of pressure here, that I need to be accepting of, and grateful for, my stoma. Moreover, it’s though I can’t feel self-conscious or depressed or averse to it because I’ve had it for a couple of years, even though it doesn’t feel like it. But there should be no pressure and no rush, we all go at our own speed.

Different Types Of Stomas 

The term stoma basically refers to an artificial opening. There are three broad types of the digestive and urinary stomas.

While a colostomy is the most commonly heard of stoma, it’s not the only type. 

With the bowel, there’s a colostomy or ileostomy, and you can sometimes, but not always, tell which is which by which side of the body it’s on.

A colostomy is made from the large bowel, usually towards the end and so it’s often on the person’s left side. An ileostomy is made from the small bowel, so it’s usually on the person’s right as the ileum is brought through to the surface of the abdomen. I have an ileostomy. 

A stoma may be temporary, with the view to ‘reverse’ it at a later day by reattaching the bowel, or it may be permanent. A loop ileostomy, for example, is the form of temporary ostomy that many people have where the rest of the large colon is still there, ready to hopefully be reattached one day. I have no large bowel (and ‘end ileostomy’) and ongoing damage means mine won’t be reversed, a fact that’s not easy to think about. 

There’s a third type of stoma, this one relating to the urinary system rather than the digestive system. A urostomy (also referred to as a Bricker bladder or ileal conduit) is a diversion for urine where the bladder and/or urethra aren’t viable options, such as because of obstruction, damage or extensive surgery. It provides another route out of the body for urine in the same way a colostomy or ileostomy provides a route out for digestive matter.  If there’s a traffic jam through town, you take the by-pass. You get the idea.

It’s worth noting that I didn’t have a clue about stomas before I had mine. I didn’t know the different types, the varied reasons people might have them, the problems you could get with them. I learned as I went along. Were it not for me having a stoma, I probably wouldn’t be any the wiser right now.

A Unique Stoma Experience

Now that the basics are covered, it’s on to stoma life. The point I really want to make here is not just that the types of stoma and the reasons for having one are different for everyone, but that the experience of living with one is different for everyone too. 

The pamphlets and online resources might try to paint a fairly universal, positive picture. These are life-saving procedures and people can mostly eat, dress, live, exercise, work and travel as they wish after recovery. 

It’s true that many people get on very well with a stoma with no notable problems. They find they can get back to a life they didn’t have before because of the bowel problems they had. However, it’s not smooth sailing for everyone. 

There are problems that can arise with stomas, from skin issues and leaks, to blockages, ruptures and twisted bowels. There are challenges with food and nutritional intake and resulting deficiencies for some people, and problems with hernias for others. Even the seemingly smaller things can have a considerable life impact, like not being able to wear the same clothes or not being able to lift heavy things again, or the effects on socialising, relationships and sex lives. It’s fantastic that many people get on with no major problems with their stoma, but unfortunately there are those plagued with issues.

It can impact our sense of self, our self-confidence, our body image and our mental health. For some it might be a small knock, for others it might be catastrophic.

Some people have just the stoma, experience minimal problems with it and are otherwise very healthy, whereas others may have a range of other chronic illnesses or chronic pain conditions to deal with alongside theirs. The mix of stoma plus other issues will have an impact on every area of life. 

There’s also the matter of how we deal with things. Our personalities, support systems, financial position and living situation all play into how we experience, manage and cope with our health. 

My journey has been a bit rocky. I’ve had a lot of problems with my stoma because my insides like to dance to music I can’t hear, and the twists have landed me in emergency department countless times, as well as sending me for an emergency surgery. Bowel twists have not been my friend. I have ongoing issues with these and consequently with reduced absorption and deficiencies, while being at a high risk of hernia because of numerous abdominal surgeries and connective tissue disease. I’ve also got other conditions and autoimmune problems that markedly affect my daily experiences. 

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.

Toxic Positive Pressures

I used to be all for thinking positively, and I still am to some degree. But I don’t like positive pressure, which can be toxic even in small amounts. Where we’re told by perhaps well-meaning friends, strangers, medical professionals and stoma nurses that we can live ‘normally’ with a stoma. Where we’re told that someone knows someone else with a stoma who’s now travelling the world, working two jobs, skydiving every weekend, having a family and so on. Hearing all of this while we’re stuck at home in pain, poorly with other illnesses, having lost our friends and jobs and whatever else, is not helpful. 

It’s just important to remember that the journey is different for everyone. The experience is not necessarily linear in trajectory and it’s not one that can be predicted. 

The Need For Recognising Uniqueness

Stomas can be classed as invisible conditions, and life with such hidden illnesses and disabilities isn’t easy. Add in lack of awareness, misconceptions and stigma, and it’s no wonder many people struggle with the mental side of stoma life. Nobody should be judged for how they experience a stoma or how they manage and cope with it, often alongside other chronic conditions.

It’s not a one size fits all approach. I think the uniqueness of the stoma journey needs to be kept at the forefront when having conversations about stomas, as well as when they’re portrayed in the media, and when information booklets and online articles for new ostomates are developed.

Whether you’re new to having a stoma or you’ve had one for decades, please know that you’re not alone if you find yourself struggling or not matching up to the lofty expectations forced upon you by toxic positivity. Just keep going at your own pace and please reach out if you need support.

Stoma life is different for each and every person. Each story is unique.

A black scroll divider.

Caz  ♥

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tidalscribe October 3, 2020 - 12:16 pm

Yes indeed, most people hear of stomas perhaps from such as our elderly friend who had bowel cancer, was happy to still be alive and happy to talk about her bag; a retired person with no worries about work or money or having a wild social life is a world away from a young person with complex medical problems.

InvisiblyMe October 4, 2020 - 2:56 pm

Very different situations and experiences, though neither is better or worse than the other because they can’t be compared. Such a good example. Thank you for sharing this and I wish your friend all the very best with her health and stoma ???? xx

ashleyleia October 3, 2020 - 12:34 pm

You’re doing such an amazing job raising awareness! xo

InvisiblyMe October 4, 2020 - 3:11 pm

It means a lot that you think so, Ashley, thank you very much!  ♥ xx

Popping Wheelies October 3, 2020 - 2:01 pm

Caz, that is impressive. It took boundless courage to share openly, including your own emotions. Very interesting as well as informative. Thank you. – George ????????‍????

InvisiblyMe October 4, 2020 - 3:20 pm

I always get so nervous sharing something like this but then comments like this make it so worth it. I’m really glad you found it both interesting & informative. Thank you very much, George! I hope you’re having a lovely weekend and there’s a little sunshine where you are ???? x

Blogging_with_Bojana October 3, 2020 - 2:05 pm

You’re one and only, Caz. You know that?

InvisiblyMe October 4, 2020 - 4:07 pm

And you are a superstar – thank you so much, Bo ???? I hope you’re having a restful weekend. xx

girrrrrl_of_two_worlds October 3, 2020 - 3:21 pm

wow! i loved reading this. it was so informative.
i don’t know anyone with a stoma- so i’ve definitely learned something new today!
also- may i say- your bag covers are SO CUTE!!
what an awesome, eye-opening post.
love always,

InvisiblyMe October 4, 2020 - 4:09 pm

I didn’t know anyone with a stoma until I had mine and found people online, and I knew nothing about them either! I’m so glad this was able to show you something new and I’m glad you like the covers – they’re so cool, aren’t they? ???? Thanks very much for your lovely comment, it means a lot to me. Have a great week ahead! xx

barmac5 October 3, 2020 - 4:57 pm

You are one very brave lady ????

InvisiblyMe October 4, 2020 - 4:17 pm

I don’t always feel like it but if sharing something scary like this could help others in some way then I’m very happy to do it. Thanks, Bar! Hope you’re having a relaxing weekend. xx

johnrieber October 3, 2020 - 4:07 pm

Very brave of you to share, and thank you for educating me on this issue.

InvisiblyMe October 4, 2020 - 4:12 pm

I didn’t have a clue about stomas before I had one, and I think as a newbie I would have liked to have seen someone tell me not to rush, and not to worry about the generalisations and positivity. I’m glad the post could be insightful for you, John – thanks very much! xx

Looking for the Light October 3, 2020 - 5:36 pm

Hi Caz
I’m with you, cheery all the time about the drastic changes in your life is not realistic and can be very irritating. I did learn a few things I did not know, but I’ll be honest if I didn’t know you, I would care to know the information. I’m sure you were the same way before yours. I hate to hear that you keep having this twisting problem, I know that’s why you just went to the ER. I wish they could figure that out. One of those unique experiences you talk about. Thanks for educating me.

InvisiblyMe October 4, 2020 - 4:34 pm

Do you mean you would or wouldn’t want to know all of this if you didn’t know me? Not sure if that was a typo or not. I didn’t have a clue about stomas before I had mine, and I do wish there was more information and support available as a newbie rather than just the toxic positivity. It’s seeing real stories and photos and the reality shared by others that can make a big difference. Thanks for sharing your thoughts, Mel! I hope you’re having a peaceful weekend xx

Svet Pavlovsky October 3, 2020 - 5:20 pm

Caz, you have so much courage to share your story and bring awareness. I agree that everyone should follow their own pace and not be judged how others with the same condition do it. Kisses

InvisiblyMe October 4, 2020 - 4:28 pm

Absolutely, everyone deals with things at their own pace, whether it’s a stoma or anything else in life. Thanks very much for your lovely comment, Svet ???? xx

forresting365 October 3, 2020 - 11:01 pm

Hey beautiful Caz! Thank You so very much for all of this. I learn a lot from You and am becoming more aware of so many things..particularly that the person standing next to me in line, driving next to me, etc. has an ENTIRE life and issues I’m completely unaware of and that may well be foreign to me. You’re a compassion teacher and help expand/grow all of us. I send You so much gratitude for sharing as openly as You do. And send You SOOOO much Love. This line of Yours:

“It’s just important to remember that the journey is different for everyone. The experience is not necessarily linear in trajectory and it’s not one that can be predicted.”

is a BRILLIANT piece of advice every one of us on the planet could tattoo on our brain for the better. It’s brilliant and true for everyone…period. HUGEST hugs to You!!! Happy Saturday! ????????????

InvisiblyMe October 4, 2020 - 7:06 pm

It’s not always easy sharing stuff like this, not just because it’s personal but because I don’t want to offend or talk down to anyone while trying to raise awareness. I’m so glad to share this now when I get a comment like this – you’ve made my day, thank you so much! You are incredibly kind, Katy. I hope the week ahead treats you kindly! ???? xx

Carolyn Page October 4, 2020 - 1:31 am

Caz, I believe this is so true for all persons and all medical conditions – one size does not fit all. The corona virus is a case in point. Some have mild symptoms with no lingering medical concerns, whilst others continue to be consumed by, so called, post coronavirus symptoms causing a cessation of life as they knew it.
When I became ill (on the last occasion) the ongoing symptoms lasted almost three years. Those years were spent in a physical condition that prevented me from being able to engage in life as I knew it.
I believe we need to be realistic. Positive thinking, if not based in reality, is hogwash. I’m reminded of a recent post by someone suggesting that positive thinking was the cure all for all things, including bringing wonderful happenings into your life! Such silly and naive thinking can truly cause harm to those in need. Better to face reality and do the best with it that is possible.
And you, Caz, are a wonderful example of this. You continue to inspire. You truly are an incredible young woman.

InvisiblyMe October 4, 2020 - 7:10 pm

I’d absolutely agree with that, Carolyn. It’s a unique experience with every health condition, much as anything we deal with in our lives. You make an excellent point with Covid, too. There’s general advice on symptoms but what people experience can vary so much, and risk factors don’t necessarily mean people fitting that criteria will suffer worse and vice versa. I’m very sorry for what you went through with your own health battles. I think that’s likely given you a similar perspective to me on the positivity front. A realistic approach is both more practical and more meaningful, so while staying positive generally is great, having toxic positivity pushed upon you can have the opposite effect entirely.

Thank you for the wonderful comment, Carolyn, I appreciate you sharing your thoughts lovely ???? xx

Michele Anderson October 4, 2020 - 1:32 am

Thank you so much for sharing this and explaining this so well, Caz.

InvisiblyMe October 4, 2020 - 7:11 pm

You’re very well – thank you for reading & comment! I hope you’re having a relaxing weekend ???? xx

Alice October 4, 2020 - 6:16 am

Good for you for sharing this post. I can imagine how hard this must have been but you’ve educated your readers very well. I had no idea there were so many different types of stomas. Thank you for sharing 🙂 Alice xx

InvisiblyMe October 4, 2020 - 7:14 pm

I had no idea about any of this before I had a stoma, and the advice I was given as a newbie was seriously lacking. I always get nervous sharing something like this bu I’m happy to be able to if it helps to raise a little awareness to those without stomas, and help those with an ostomy to feel a little less alone. I’m really glad you found it informative – thanks very muchly, Alice! I hope you’re doing as well as possible  ♥ xx

Deeksha Pathak October 4, 2020 - 6:58 am

Caz, I must say that you are a wonderful person. It needs lots of courage to talk all about so openly and creating awareness. None of us can share what you go through, but we all are here with you in your thoughts and strength!

InvisiblyMe October 4, 2020 - 7:16 pm

I think it’s the same with all health conditions and in our lives generally because we all walk a unique path. Hopefully this might help others feel a little less alone when faced with ‘toxic’ positivity, and if I can raise just a teeny bit of awareness around stomas then that’s fantastic. It terrifies me a little less sharing something like this when I get such a fantastic comment – thank you very much, Deeksha! I hope the week ahead is a good one for you ???? xx

InspiresN October 4, 2020 - 7:19 pm

Thank you Caz for sharing about stoma and creating awareness ! You have explained it in very simple and easy to understand terms and am sure it will help folks looking for this information. Say strong and your story is inspiring !

InvisiblyMe October 4, 2020 - 10:26 pm

I’m really glad you thought I explained things well, and I really do hope it can help in some way for those with and without stomas. Thank you very much lovely – have a great week, Nisha! ???? xx

Ann Coleman October 5, 2020 - 12:47 am

Thanks for this post, Caz! My husband will have to have a temporary stoma if he needs surgery for his colon cancer. We’re still not sure if he’ll have the surgery or not, he has about a 50/50 chance. And there’s always the chance that if the surgery doesn’t go well, the stoma will be permanent. His original surgeon was SO positive about the “joys of the bag” that we actually switched to a different one. Because you’re right, a stoma isn’t the end of the world, but it still presents its challenges for many people and we need to be sensitive to that!

InvisiblyMe October 8, 2020 - 1:34 pm

I’m so sorry for what your husband’s going through, and that can’t be easy for you either, Ann. I have to say, I’m quite glad you changed surgeon; those that shine on about the positives aren’t very realistic and I’d be weary too. Many people have stomas, temporary or permanent, with no or minimal problems, but there are those like myself that do have lots of challenges along the way. It’s not easy to deal with emotionally even in the case where a stoma could save a life from cancer. I know it’s a very different situation for your husband, but if ever either of you have any questions, or if you just want to chat, please know I’m here. I’m going to keep my fingers crossed for him, Ann. I really do hope there’s some good news just around the corner, whether the stoma surgery is needed or not  ♥ xxxxxx

Ann Coleman October 8, 2020 - 6:31 pm

Thanks so much, Caz! You are so very nice…

Despite Pain October 5, 2020 - 6:28 am

Caz, thank you for sharing this information about stomas. We are all individuals and your post explains the different types of stomas really well. Nobody should be judged for any health issue or how they cope with it. Acceptance can’t be forced or rushed. It’s a journey with many twists and turns and I often find just when you think you’re there, something happens or some weird emotion crops up and sends you on a downward spiral again. I admire you for being open and trying to bring awareness about it.

InvisiblyMe October 8, 2020 - 1:37 pm

You’re right, that journey isn’t always one direction either because anything could trigger us down into that spiral or feeling disheartened and exhausted with it all. We can only deal with these things in our own time, in our own way. I do think positivity is great in theory, but it in cases with our health it can actually have the opposite effect and be very damaging. Thank you so much for reading & your great comment, Liz. Sending gentle hugs your way  ♥ xx

Paulette October 5, 2020 - 4:20 pm

This was a fascinating read. Thank you for the education about stomas!

InvisiblyMe October 8, 2020 - 1:39 pm

You’re very welcome – I’m really glad you liked the post. Thanks, Paulette! x

trippingthroughtreacle October 5, 2020 - 4:44 pm

Caz, thank you so much for educating me and so many others about stomas. I know that it isn’t always easy to be open but please know that you are such a superstar for raising awareness. So many people, perhaps at the start of their ‘stoma journey’ (sorry to sound cheesy!) or those just wanting to know more information will learn so much from your post. Thank you xxx

InvisiblyMe October 8, 2020 - 4:28 pm

‘Stoma journey’ is a good expression, because it really is a trek and a half! Thank you so much for your comment, Jen. I always worry about writing something so personal while trying to raise awareness too because I don’t want to offend in any way or talk down to people. You rock! ???? xx

Darnell Cureton October 5, 2020 - 5:57 pm

Much thanks Caz for telling your story and raising awareness of this chronic condition. Most people have no idea that the condition is very different for each person, if they know anything at all. You help open the eyes of everyone that takes the time to read your posts. We stay informed and knowledgeable. For that, I cant thank you enough.

InvisiblyMe October 8, 2020 - 4:30 pm

And I can’t thank you enough for your ongoing support and fabulous comments! Thank you, Darnell, it really does mean a lot to me and if my posts can do the tiniest bit of good in the world then I’ll be happy ???????? Take good care of yourself xx

tinytearstoni October 6, 2020 - 12:40 pm

Thank you Caz, for another great post and for raising more necessary awareness – I’ve learnt so much from you and the world of stoma. You always write from the heart, being vulnerable and positive. You always build people up, telling them they are an inspiration, but here’s to you my friend. A truly inspirational soul, with a deep fighting spirit within. I’m glad our ‘virtual’ paths crossed a few years ago. Wishing you such a kind week. x

InvisiblyMe October 8, 2020 - 4:37 pm

Naawwww this is so lovely to read. It’s comments like yours that keep me going & keep me blogging. It’s scary being vulnerable and sharing like this, especially with ’embarrassing’ conditions. Thank you so much, Toni – I’m so glad to have ‘met’ you in the online world too! ???? I hope this week is being kind to you so far xx

Stacey Chapman October 6, 2020 - 1:46 pm

Wow, Caz. This was so educational and gives so much information. Thank you. I really learned a lot.
I especially love how you highlight “toxic positivity”. I hadn’t heard that term before….but it’s the perfect term.
Like you, I do believe in positivity. I believe in living with gratitude for all I have, most especially the good days.
BUT….for gawd’s sakes, sometimes (at least a couple times a week), there is the need to profusely swear, stomp my feet and cry.
And I think it’s important to also highlight that. Just like you did in your post…..
They should print THAT in their brochures.

Great post as always!!
❤️ Stace ❤️

InvisiblyMe October 8, 2020 - 4:46 pm

I’m all for positivity for the most part too but not in spades where the reality is underplayed and people feel crap when they can’t meet those expectations. I thought ‘toxic positivity’ was the closest to how I feel about it because it can have quite damaging effects, in my experience at least. I’m glad it made sense with what I was trying to pull through there – thank you so much, Stace, I’m really glad you liked the post! ???? xx

Michelle Curtis October 7, 2020 - 8:19 pm

Caz, first let me say I’m really proud of you for finding the courage to speak more openly about your stoma. I really hope that doesn’t sound paternalistic and condescending. I’ve been curious and concerned, but never wanted to push because I know it’s a sensitive private matter for you. I’ve learned so much in this post and I hope it means you’re finding a new level of comfort and acceptance. I also hope more than anything that you and your care team can find ways to make it work better for you so you have fewer hassles, A&E visits and surgeries. Sending you lots of love and deep respect! ????❤

InvisiblyMe October 8, 2020 - 4:48 pm

Not paternalistic or condescending in the slightest, Mykie. I really appreciate your thoughts because it’s daunting writing something like this not just because it’s ’embarrassing’ and personal, but because I don’t want to offend or condescend while trying to raise awareness either. It’s important to talk about the ’embarrassing’ stuff because it can be soul-destroying keeping it to ourselves or worse, not seeking help when we need to because of the embarrassment, shame and stigma. Thank you so much for the comment lovely!

I was thrilled to see you got some mojo & focus to write the other day by the way, I hope you get more of those times in future! ????xx

Khushi October 8, 2020 - 5:25 am

Kas I loved reading this post.
thank you for sharing and educating me 🙂

InvisiblyMe October 8, 2020 - 4:49 pm

You’re very welcome, I’m glad you liked the post. Thanks very much, Khushi! ????

Gemma October 10, 2020 - 11:14 am

Such an honest, well-written and eye-opening post. I know people who have stomas, but I had no idea about the different types. Thank you for sharing your unique insight and knowledge Caz.

Gemma x

Holly October 16, 2020 - 2:37 pm

Caz, I have no words for how proud I am of you for sharing your story with the world. So often, people are ignorant simply because they’ve never been through something themselves. There’s a world of difference between going through something personally and hearing about it through someone else’s experience.

So much misinformation is out there about stomas and the many reasons one might be required. When someone is newly diagnosed with a condition or disorder that will create a need for a stoma, temporarily, or permanently, it must feel overwhelming. Reading a story like yours brings hope to what could have been for so many, a hopeless feeling situation. You share your story in such an inspirational, real, raw and transparent way. You inspire me, Caz. And you inspire countless others every single day!

One of the lines that stuck out to me most was: “But I don’t like positive pressure, which can be toxic even in small amounts.”

I couldn’t agree with you more! We now have a culture that values superficiality and phoniness so much that many have forgotten how to be real with their emotions and their lives. It is unhealthy to stuff down what we feel. Simply because we feel something negative doesn’t mean we should automatically force feed ourselves positivity. More often than not – we need to give ourselves permission to feel the negative and learn more about why we feel what we do. We can’t grow if we’re not willing to be vulnerable in *all* of our emotions — up, down, and everything in between!

Thank you again, my friend, for sharing your story. Please know that you make a difference in so many ways. I don’t think you realize how strong the impact you have is! Sending my love to you. You’re an awesome woman.

Hope found in M.E. October 18, 2020 - 11:38 pm

I have so much admiration for your direct approach and empathy towards a life change which must be so incredibly testing. A dear friend needed a stoma following surgery some years ago now. She made light of it being jokey, but I knew it was to cover the sudden & difficult change in her life. I now have a better understanding than before from this post, Caz. Thank you for being so transparent. I’m sure it will help a lot of people. ???????? xxx

sarah February 28, 2021 - 6:22 pm

Best article I have read about having a stoma. I’ve had one for 20 years. Individual circumstances really do effect the experience. I was once nearly driven off a stoma support forum for saying I hate my stoma. Because you’re not allowed to be anything other than positive you know.


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