rich emollient used in the management of eczema, psoriasis and other dry skin conditions.


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.

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


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.

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

Living with a stoma

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.

Some days I feel ugly, useless, awful. 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.



I’m Caz - Blogger, writer, campaigner, tea drinker & over-thinker. I live with a stoma and invisible illnesses, including connective tissue disease, pernicious anaemia, osteopenia and fibromyalgia, making me passionate about raising awareness and understanding of physical and mental conditions. Nice to meet you! I run the blog InvisiblyMe :

9 Responses to Coming To Terms With A Stoma

  1. This is a fantastic insight into the process of receiving a stoma, Caz. Completely agree that your stoma does not define you, and I’m sure other will draw inspiration and strength from your story.

  2. Yamin Ahmed

    Hi Caz, My name is Yamin, I am writing from Ontario Canada. However, i like drinking tea, been drinking since 6th grade;likewise, i think over think too much. On the other hand, i am an Ostomate, living my life one day at a time. Moreover, i am a novice blog writer, and i need ideas to write blog about stoma. Matter of fact, i need idea where to post them.Last but not least, how do i become a campaigner..

  3. Yasmin – you would be very welcome to join the talkhealth blog here. We welcome anyone that is keen to share their life and health experiences with others as we know how helpful it is to hear how others live their life with health concerns so we can all share good hints and tips!

  4. I am currently waiting for my operation to resection my bowel after 15 years of diverticular disease and this year 9 hospital stays, I am nervous to say the least, my family are delighted that at last i have found a surgeon who will operate on me, today i have very mixed feelings, I am on the whole a very positive person. Having been told I will have to have a stoma and the uncertainty of wether it will be permanent or not is daunting, so its really helpful to read blogs where people are living with them and not letting it define them, I am guessing it is an upand down journey, and I am hopeful that I too will not let my disease define me. Hopeful that a sense of humour and determination to have a better quality of life will prevail. Thanks for your blog it has given me hope 😀

  5. Wendy Green

    Thanks for a great insight into life with a stoma. I had an emergency colostomy nearly 5 weeks ago and I can identify with so much of what you say. Some days aI feel great, then I go and eat something that doesn’t agree with my extra-sensitive gut and I have to spend ages in the bathroom! However I realise my colostomy literally saved my life and I’m really lucky to be alive, so I really shouldn’t complain.

  6. Alexandrea Goulet

    I just wanted to thank you for your article. I am going to have 2 stomas in 2 weeks

    • Caz Caz

      I’m glad you found the post in time, Alexandrea. Wishing you all the very, very best for your surgery – I hope it goes as well as possible. Always feel free to get in touch via my blog ( if you ever need to chat at all. I’ve also posted on there previously about things like hernias to keep in mind as that’s important after surgery. Sending lots of good vibes and best wishes 🙂
      Caz xx

  7. Jax15

    I have had diverticular disease for years now, but it is under control but sometimes when I go it is very loose and then at the finish it is slimy and yellow. I am also in a lot of pain all the time in my lower pelvis area and my lower back, is this normal?

    • Hi Jax15

      Thank you for your comment, I felt that it was better warranted as a question to our bowel forum and have therefore posted it there. I will let you know if any of our members comment/answer directly.

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