Home My Journey Coming To Terms With Stoma Life

Coming To Terms With Stoma Life

by InvisiblyMe
A photo I took in the mirror with my t-shirt lifted up while I'm wearing pants to show my stoma bag. Overlaid is the title : Coming to terms with stoma life.

Adjusting To Stoma Life : A Big Deal

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. A stoma 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

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

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.

A photo of me reclining on a lounger in my bikini, with the stoma bag just visible to the right hand side of my tummy.

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.


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Elaine May 14, 2018 - 6:27 pm

What a open and honest post which could only come from someone as brilliant as you ???? I remember years ago being in hospital with yet another bout of diverticulitis and the lady in the next bed had just had a stoma bag fitted. I was so in awe of how she took it all in her stride. It is a fact that whatever life throws at us we deal with it and it does make us stronger.

You are far more than your various illnesses you are a beautiful young vibrant women with lots to look forward to.

Elaine xx

InvisiblyMe May 17, 2018 - 9:30 pm

I am so incredibly grateful to you, Elaine, for being amazing – you are so compassionate and kind and although I think you think too highly of me, I appreciate your support more than you know. You’re right; whatever life throws at us, we often cope better than we ever would have expected, and even if we don’t, we learn from it and grow stronger in certain ways, and new paths can open up for us where we may only initially see the things that get harder or the doors that close to us. Thank you lovely  ♥
Caz xx

Paula Bardell-Hedley May 14, 2018 - 6:31 pm

A superb post, Caz. I learned a lot.

InvisiblyMe May 18, 2018 - 3:14 pm

Thanks Paula – it’s great to hear you learned something from it as I hope posts like this can increase understanding and awareness. I hope you have a lovely weekend ahead =]

Ashley May 14, 2018 - 6:50 pm

You go girl!

InvisiblyMe May 18, 2018 - 3:08 pm

Thanks ♥ xx

Christy May 14, 2018 - 7:07 pm

You’re an inspirational survivor! Please keep it up! Your posts are making others want to push forward! Thank you for sharing! ????

InvisiblyMe May 18, 2018 - 3:49 pm

It would be lovely to think that something I write could help, even if in just a tiny way, anyone that reads them, that would be amazing. Thank you for the encouragement and lovely comment, Christy! ♥
Caz x

Comedy Plus May 14, 2018 - 7:59 pm

I’ve known a few folks that had this to face. Some temporary and others permanent. What a great post on what to expect.

Have a fabulous day. ♥

InvisiblyMe May 18, 2018 - 3:48 pm

Before I had mine, I didn’t know anyone with a stoma (of course, it’s more than possible I’d known acquaintances without knowing they had one) so it’s always interesting to see whether others know of people in their lives with one. I’m glad you found the post helpful in terms of what to expect in a general sense. Thanks for taking the time to read & comment – I hope you’re having a good week so far! 🙂
Caz x

Viola May 14, 2018 - 8:02 pm

The husband of my friend has a stoma due to cancer. And it is as you say “Everyone copes with what life throws at us in different ways”. But I really had to push myself to ask how everythings goes with the stoma. I am glad I did, though. I don’t like elephants in the room. It is people like you who encourage people like me to talk about it.

InvisiblyMe May 16, 2018 - 4:40 pm

I hope your friend’s husband is doing well following the stoma surgery and also all clear since the cancer diagnosis. You’re right, things like stomas can become an “elephant in the room” and although everyone is different, I’d prefer someone asked me about it because it would face it head on, and then I’d probably crack an awful joke to ease the tension for everyone involved! 🙂

Melissa Henderson May 14, 2018 - 8:27 pm

Your words will help others. Thank you for blessing us by sharing your thoughts.

InvisiblyMe May 16, 2018 - 4:47 pm

Thank you for taking the time to read & comment, Melissa, it means a lot! 🙂

Benn Bell May 14, 2018 - 8:32 pm

Hey Caz! Brave and honest girl. And pretty too! So glad I ran across your blog. Proud to know ya! Hang in there girl. You are doing just fine!

InvisiblyMe May 16, 2018 - 4:48 pm

Aw shucks, you make me blush! Thank you Benn, your support means a lot and I really appreciate your comments! =]

Jay May 14, 2018 - 9:38 pm

My best friend “wore a bag” as she put it – hers was permanent. And I think the reality is not something doctors prepare you for at all. I think her life was about always knowing where a washroom was, if she needed one quickly, which she sometimes did. I remember being out for a nice walk and ducking into the nearest business so she could take care of things. And of course, knowing which foods were going to be a problem (I remember lettuce was one that created a lot of air for her). And yes, feeling self-conscious about what bathing suit to wear. I remember her choosing a one-piece that was a bikini for all practical purposes thanks to large cutouts on the sides. Very sexy, but the top of her bag (at the very least) poked outside the material. I thought it was perfectly fine but that’s easy for me to say and harder for her to be brave about.
She got hers after the birth of her first child, when she was feeling too sick to care for her. I wish this online community would have been available to her then. There’s such a learning curve, and that’s not even counting the actual health aspect of it – and the money.

InvisiblyMe May 16, 2018 - 5:11 pm

You’re right, they don’t prepare you for ‘life’ with a stoma at all, at least that was my experience. Sounds like your best friend had to discover a lot of those things herself with food, clothes, finding the nearest loo etc. The online community, whether that’s informational websites, forums, Facebook support groups or blogs, are so incredibly valuable in this respect, and I’m sorry she didn’t have all of this when she went through coming to terms with her stoma. Thank you so much for sharing your friend’s experience and how you viewed this (like with the swimsuit and the bag poking out – you thought she looked sexy and the bag didn’t matter, but for the person wearing it, it could have felt very different). She was lucky to have you as her friend while she was going through all of that, Jay. xx

Lynn Abbott May 14, 2018 - 10:05 pm

Your authenticity and positivity in the face of enormous obstacles are inspiring, dear Caz. I know it is difficult, but you have tackled it with superhero courage! <3 <3

InvisiblyMe May 16, 2018 - 5:13 pm

There are countless times when I don’t feel like I’ve been all that positive or brave, so it’s wonderful to hear you think otherwise! I do try to temper the positivity of posts on something like my experience of stomas with the negative side, the struggles, the reality; it’s important, I think, to be honest and while I want to be encouraging, I also want to be genuine and let others know they’re not alone if they don’t think they’re feeling all that positive either. Thank you so much, Lynn – have a wonderful rest of your week 🙂

Alyssa May 15, 2018 - 12:53 am

I absolutely love how open and honest you are Caz! Your courage is way beyond inspiring to all your readers and we are lucky for the chance to know you! I always love and appreciate your posts and the advice you give me. You give me so much encouragement that I will never be able to thank you enough!! Always stay your strong and compassion self as we are all so blessed to have you in our lives, even if some of us are not privileged enough to meet you in person!

InvisiblyMe May 18, 2018 - 3:44 pm

Are you trying to make me cry, Alyssa? Honestly, your support and your kindness mean a heck of a lot so I’d just say exactly what you’ve said to me right back at’cha! ♥♥♥
Caz xx

Erin May 15, 2018 - 5:57 am

May God bless you! Such an amazing post 🙂 I hope you continue to fight on ♥️

InvisiblyMe May 16, 2018 - 5:17 pm

Thank you so much, Erin! Have a great rest of the week 🙂 xx

Sam May 15, 2018 - 7:25 am

Caz, I love this. You have captured beautifully what so many of us with stomas have and do experience. I remember the first year with my colostomy was so surreal. I knew this was my new norm and I was capably dealing with looking after it but it still seemed so strange that this had actually happened to me. 8 months after I was hit with a rare bone disease and found myself dealing with something equally if not more bizzare. That actually made my stoma seem more normal from then on. It’s a weird journey isn’t it. You are doing so well and are so inspiring. Thank you fo sharing. Lots of love Sam ????

InvisiblyMe May 18, 2018 - 3:43 pm

I think you’re right – what seems to odd (or challenging, or a level of exhaustion or pain) can actually be replaced by another experience that is stranger/more exhausting/more painful, and what we dealt with before doesn’t seem as bad. I think we learn a lot from what we’ve been through and don’t tend to realise it at first, but those experiences make us more resilient and stronger to deal with whatever may happen next. A strange journey indeed..! Thank you for taking the time to read and leave such a wonderful comment in sharing your own experience, Sam. ♥
Caz xx

Laina Eartharcher May 15, 2018 - 11:58 am

Caz, you are so beautiful, inside and out ???? I admire you for making the most and the best of your situation! ????????????????. This is an amazing read ????????

InvisiblyMe May 18, 2018 - 2:47 pm

That’s incredibly kind of you Laina; thank you so much for your continued reading & ongoing support, it means a lot! You rock ♥ Have a lovely weekend xx

Laina Eartharcher May 15, 2018 - 11:59 am

Many hugs and lots of love to you! Sending healing thoughts to you on your continuing journey! ????????????

InvisiblyMe May 18, 2018 - 2:48 pm


Richa May 15, 2018 - 5:17 pm

You’re an inspirational survivor! Love and light!

InvisiblyMe May 18, 2018 - 2:31 pm

That’s very kind of you to say (I desperately want to say “no I’m not” but I’m learning to take compliments!) Thank you Richa, hope you have an awesome weekend 🙂

Sophie Hunt May 15, 2018 - 5:49 pm

you are such a brave inspiration thank you for sharing!

InvisiblyMe May 18, 2018 - 3:35 pm

And thank you so much for reading and leaving such a lovely comment! 🙂

ignitedmoth May 15, 2018 - 8:47 pm

Hugs! <3 What an inspiring and honest post. It was really informative, too, so thank you for sharing. 🙂
Amazing post! <3

InvisiblyMe May 18, 2018 - 3:34 pm

I’m glad you found it informative as well as encouraging, which is what I was aiming for. Thank you so much for taking the time to read & comment, it’s much appreciated! ♥

Annie May 16, 2018 - 10:21 am

Wow! Such a powerful post. My step mum has a stoma and I have been slated for a ileotemy and colostomy and has little concept of the reality of any of it despite conversations with specialists. Thank you for sharing your very personal experience, very brave and so grateful. Inspirational woman!!

InvisiblyMe May 18, 2018 - 3:33 pm

I hope your step mum is doing okay with hers. Do you mean that you may be due either an ileostomy or colostomy yourself? Understanding it all is quite hard (the physical aspects and what would happen) and getting your head around it can be something else entirely; it’s a lot to take on board. Please know that I’m here if you have any questions or ever wanted to chat, just drop me an email. Thank you for taking the time to comment – I hope you have a relaxing weekend ahead 🙂

Dennis May 17, 2018 - 5:25 am

Thank you for sharing. I have a close family member who had his colon removed six months ago or so because of complications with Crohn’s disease. I would have a really hard time dealing with that, but he seems to be doing really well. You do too.

InvisiblyMe May 17, 2018 - 9:27 pm

I’m sorry about your family member, but it’s good he seems to be coping well after the surgery. I think you cope better than you may expect with things like this, whether you do it naturally or because you focus on small steps and practical things, and eventually the process becomes a little more familiar and a tad less daunting. I wish him all the very best as it’s a rough road with ostomies and bowel surgery but I hope he gets better and better as time goes on because removing the diseased part of the colon would hopefully make a huge difference. Thank you for sharing and taking the time to comment 🙂

Claire Saul May 18, 2018 - 7:45 pm

The majority of people will never come across the word stoma, far less deal with one….and it is quite a shock the first time you see one! I do remember it as a student nurse and all the body image issues that come with it. Caz, I take my hat off to you for your stoicism and positivity – a woman after my own heart. I know we have immensely different experiences, but I do think we have a similar mindset and as you say by taking one day at a time, you do get through it. There are good days, but there are some bloody awful ones too……but there always has to be something positive to focus on.
I was talking about this with my old nursing friends last weekend and said I am lucky as i am here – my post about the reunion is dedicated to one of our set Kate, who was involved in a hideous car accident that left her severely brain damaged and she died 2 years later. She was mid 20s and about to start a hospice sister post……
No one rocks a bikini and bag like you do!!! C x

InvisiblyMe May 19, 2018 - 3:38 pm

I always found it odd to kept being told by doctors and stoma nurses and such that so many people have stomas, and finding it odd that I knew nobody with one; I really don’t think that all that many people necessarily have any experience of or with them directly or indirectly. I knew nothing about them until I was put in that position. I’m so sorry about Kate, and for such a tragedy that totally blindsides like that, it really doesn’t seem fair. You’re right – there needs to be something positive to focus on, good things to come from the bad; it’s about accepting there are bad days but taking it step by step. Thank you so much for the wonderful comment, Claire, you’re an awesome lady and I’m so grateful to have ‘met’ you in the blogging world!  ♥

Jenny May 18, 2018 - 8:24 pm

Fantastic post, Caz – you are such an inspiration! I have learned so much from reading this post and can just hear how strong you are in your writing. Oh – and I wish that I looked as good as you do in a bikini! Keep going, Caz, you are amazing 🙂 xx

InvisiblyMe May 19, 2018 - 3:34 pm

Thank you so much, Jen, I really appreciate your support and taking the time to read & comment, it means a lot! I’m really glad you found it insightful and that you could learn something from the post as that’s what I had hoped to be able to do with it. I hope you have a lovely weekend ♥

anne leueen May 18, 2018 - 9:21 pm

I’ve had a colostomy for 18 years now. I knew going into surgery for colorectal cancer that I would have one I have to say it is amazing how the body can readjust….no rectum, no problem …we’ll just redirect out through this little sleeve here. I have been fortunate to not have any problems with skin issues, appliance failures or any digestive upsets. I’m happy to tell people I have an ostomy because I think there are still many people who fear what they see as “the dreaded ‘bag’ outcome.” I don’t wear a bikini but I was never much of a bikini wearer so that is not much different now. But I admire the photos I have seen of young people who do wear bikinis and have their bags in colorful covers. Thanks for this encouraging post.

InvisiblyMe May 19, 2018 - 3:30 pm

I’m so glad you have got on okay with your colostomy and that it’s been a positive move in overcoming cancer; I do hope you’re okay now.. Thank you so much for taking the time to share your experience, Anne!  ♥

Lowen Puckey May 19, 2018 - 2:44 am

A really thought provoking post and beautifully written x Lowen @ livingpositivelywithdisability.com

InvisiblyMe May 19, 2018 - 3:27 pm

Thank you Lowen, I really appreciate that! 🙂

Suzanne Cox May 20, 2018 - 9:01 am

What a lovely, honest post. I have learnt a lot from it and think you are inspirational. I also love your photo that you put up, you look fab. Although I don’t have personal experience of what you have been through, I think you are spot on about dealing with things step by step at your own pace.

InvisiblyMe May 20, 2018 - 4:42 pm

That means a lot, thank you. I think whatever we’re going through when it gets tough (such as dealing with young boys!), remembering to take it step by step can be so important because the whole thing otherwise is rather overwhelming. Thank you for the wonderful comment, Suzanne ♥

Emma (Not Just Tired) May 20, 2018 - 2:07 pm

Such an inspirational post Caz. Thank you for writing this. I learnt a lot. I really do admire your strength, openness and honesty xx

InvisiblyMe May 20, 2018 - 4:43 pm

I’m glad you found the post encouraging and that you could learn a little from it, that’s fantastic. Thank you for your support & such a lovely comment, Emma, it’s much appreciated. I hope you’re having a good weekend ♥

3sistersabroad May 23, 2018 - 10:24 am

Caz thank you for being so honest with this post. I learnt a lot from your post I know a bit about stomas but not as much as I do now. I remember your holiday loved reading about that and you with your cover over your stoma and those gorgeous bathers. thank you so much xx

InvisiblyMe May 24, 2018 - 3:08 pm

I’m so glad you found it a little insightful and that you could learn a little something from it, that’s fantastic. And thank you – first time in a bikini for me, let alone a stoma and a bikini! 🙂

Angela May 25, 2018 - 2:59 pm

You my dear friend are truly awesome. You are a warrior in every sense of the word. Xo

A May 25, 2018 - 6:40 pm

So courageous of you to allow yourself to be so vulnerable and helping me understand fibromyalgia. You are raising awareness and helping people like me understand the illness. I thank you a million times for sharing your journey. ???? I too struggle with chronic pain and an invisible illness and your journey has resonated deeply. You are incredibly strong ????

InvisiblyMe May 27, 2018 - 4:03 pm

Thank you for your kind words, and I’m glad it resonated with you so that you know you’re not alone (in a way, but I hate that you’re struggling yourself with chronic pain & invisible illness). Your comment is very much appreciated!  ♥

Kate May 27, 2018 - 2:35 pm

You are incredibly beautiful human being! Such an inspiration! Your post is so empowering!!! Thank you for being so honest, Take care!!!!

InvisiblyMe May 27, 2018 - 4:04 pm

That’s so lovely of you to say, thank you so much Kate! I hope you are having a peaceful weekend  ♥

Jess June 3, 2018 - 8:37 pm

Oh my gosh, you are such an inspiration. You really have been through a lot and to see someone take it so well and go through with a risky surgery like this so that you can keep on doing you is amazing. Thanks for telling your story and I look forward to reading your blog!

InvisiblyMe June 4, 2018 - 2:22 am

That’s such an amazing comment, thank you so much. Just been checking your blog out, too. Thanks again, Jess, it’s much appreciated. Have a great week! 🙂

da-AL July 3, 2018 - 6:33 am

You are supremely generous to share your experience with us. As a reader, I feel privileged to have a role in anything that helps you get stronger, because to me it — now I’m getting all convoluted, so I hope you get the gist of what I’m trying to say, LOL — the fact that there can be a give & take to this wonderfulness of yours makes me happy. wishing you only the very best, dear

if you’re interested, I’d love for you to guest blog post on my site — then my readers could meet you & visit your site & you could also reblog it back to here — if so, here’s a link to flexible guidelines:


InvisiblyMe July 22, 2018 - 7:58 am

That is such a lovely comment, thank you very much! I’m sorry I’m only just seeing it now – I’ve dropped you an email about your kind suggestion to guest post on your blog. ♥

Innerdialects July 7, 2018 - 5:27 pm

You lovely fabulous person, stay blest! How awesome – the way you took this in your stride and how! Thank you for the honest candid share, makes the world a better place

InvisiblyMe July 22, 2018 - 7:59 am

Aw that’s very kind, thank you! I try to be honest because it’s not always easy, but it’s do-able. Thank you for the awesome comment ♥

CrankyPants July 20, 2018 - 6:17 am

I have a stoma too but mine is a urostomy.. I lost my bladder to IC when I was 28. I’m 47 now. I”ve never met another person with a urostomy in all these years. It’s lonely. The frequency is extreme so it’s robbed a lot of my life. Now I’m also dealing with GI issues. Sorry you’ve had to go through all of this. It’s a huge deal not only physically but emotionally as well.

InvisiblyMe July 21, 2018 - 4:06 pm

Right back at you – I’m also sorry you’ve had to deal with what you have, and for nearly 20 years. I haven’t ‘met’ anyone with a stoma either in real life, but I can appreciate ileostomies are more common and in public knowledge than urostomies. I find that with online groups such as on Facebook it feels a little less lonely, there’s a degree of camaraderie and support; do you use those at all? I keep up with your journey on your blog and my heart aches that you’ve got so much on your plate, and with more recent issues to add on top. Please know I’m always here if you want to get in touch to chat. Thank you for the comment lovely  ♥

Eliza July 23, 2018 - 12:17 pm

This post brought me to tears. You brought me to tears. With your honest, courage and hope.
Thank you for sharing.

InvisiblyMe July 23, 2018 - 2:56 pm

Aw that is an incredibly lovely thing to say, thank you so much! I’m glad I could be honest with this post, show the struggles and the strength that can come with such a journey. Thank you for taking the time to read & comment, it’s much appreciated. Have a good week! 🙂

Simon Oates August 3, 2018 - 2:47 pm


Having read your blog post about stoma’s i can relate and understand your experiences. I got mine when i was 16 and found there was no support group or blogs at that time. Posts such as these can give optimism and insight for fellow patients. It is not an easy topic to be open and honest, however you have done it and deserve kudos for doing that. You will get bad, average and good days.. That is perfectly okay and should be expected. Don’t be too hard on yourself too..

If you have any questions or anything please, i’ve now got 10+ years of experience so might be able to help where possible.


InvisiblyMe August 6, 2018 - 4:25 pm

I’m sorry you had yours both so young & at a time when there was no online support, which is invaluable for people now. Thank you so much for your wonderful and kind comment. Just so you know it’s a two-way street; while you have more experience than I do at stoma life, I have open ears (or eyes, in this case) so you can always drop me an email if you ever wanted to chat to someone in a similar boat. Thanks again, Simon and I hope you have a positive week ahead. Caz 🙂

Zana Carver January 18, 2019 - 11:48 pm

“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’. ”

You are such a brave, amazing, and beautiful person! What an inspiration you are to so many people whose lives you’ve touched! I wish you healing and happiness! God bless you.


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