The truth about stomas and why stigma needs to be silenced. — Scope | Disability forum
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The truth about stomas and why stigma needs to be silenced.

Cher_Inactive Posts: 4,414

Scope community team

Living with a stoma

Stomas get a bad rap. A sign that the bowel is ‘dysfunctional’ and the body can’t control its own waste, our collective reaction towards them leans to awkward disquiet. This unease with the presence of poo is reinforced in myriad ways as we grow up: comedy sketches where explosive diarrhoea gets the quick laugh, professionals asserting toddlers should be toilet-trained by 3 years old and the unspoken rule that toileting be kept private, hygienic, and discrete. These cultural conditions make the decision to have a stoma laden with both personal and public considerations. Indeed, when faced with the prospect of negotiating stigmatised attitudes, some have sadly decided against having a stoma and died. Such tragedies make it increasingly important to talk about stomas to debunk misinformed, dangerous myths that can hinder people accessing their life-saving benefits.

women with white t-shirt pulled up to show stoma

What is a stoma?

Stomas are openings made surgically at the front of the abdomen, from which faeces or urine is excreted into a bag or pouch. Reasons for having stomas include cancer, Inflammatory Bowel Disease, diverticulitis, bowel obstruction or digestive/urinary system injury and they can be temporary and reversible or permanent. BUPA tells us the three commonest type of stomas are: 
  • Ileostomy – an opening from your small bowel, to allow poo to leave your body without passing through your large bowel. The poo is usually quite fluid after an ileostomy.
  • Colostomy – an opening from your large bowel, to allow poo to leave your body without passing through your back passage (anus). After a colostomy, poo is usually quite solid.
  • Urostomy – an opening for your ureters, to allow pee to leave your body without passing through your bladder.
    And, you might not know it, but people can have more than one stoma in place at a time.
And, you might not know it, but people can have more than one stoma in place at a time.

How do people manage stomas?

Many people are unaware what stomas look like or how they are managed because unless you or a loved one has one, how would you ever know? Contrary to any belief that they are dirty or deformed, stomas are small, moist protrusions (sticky out bits!) that are pinky-red in colour because, like our gums, they are made from mucous membranes. Stomas have no nerve endings and are painless, while the consistency of poo that comes out might be watery rather than formed. Once full, stoma bags or pouches are emptied into the toilet and the stoma itself is cleaned. You can see Mr Crohn’s Colitis show how this is done in this video on the LadBible website.  

How do stomas impact people’s lives?

Recovering from having a stoma takes different times for different people, and the implications can be far-reaching. This Colostomy UK leaflet on ‘Living with a stoma’ outlines some common questions people might have, such as whether to tell others about the operation, or to what extent sex lives or employment will be affected. The good news is stomas shouldn’t disrupt life plans, intimacy, or jobs, but it is completely natural for there to be bad days and a period of emotional adjustment as the body and self-image changes. Focusing on the life-changing benefits of stomas such as eliminating cancer, disease and pain makes it clear why stomas should be celebrated and not feared. 

To learn more about life with a stoma, see this video made by the team at MacMillan Cancer Support.

What support or other resources are available?

Anyone who has a stoma should be receiving medical care from the gastroenterology team and stoma nurse at their local hospital. While outside of this, there are several charities dedicated to providing specialist support such as Colostomy UK and Crohn’s and Colitis UK to name but a few. For those with children who have a stoma, make sure to check out the wonderful support available from the CICRA charity too.

Scope’s online community is also a safe space for anyone who wants to talk about stomas, whether it be yourself or a loved one who needs advice or a friendly ear.

Over to you:

• Have you noticed a change in attitudes towards stomas?
• Do you think more needs to be done to educate people and dismantle outdated stereotypes?
• Do you have any unanswered stoma questions?

Send us your comments by dropping them below.   
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  • Shastus
    Shastus Member Posts: 33 Listener
    I’ve had a stoma (Crohns) colostomy first for 38yrs and now Ileostomy since 2015. Between 1977 when first diagnosed and now I’ve had 5 resections where lengths of inflamed bowel has been removed I now only have about 4ft of small intestine left no colon. Stoma appliances (bags) have come a long way since my first bag which the seal was a brown gooey substance that came away from the skin if I got warm and sweated or got wet, sadly I loved swimming but have never been since before my colostomy was formed. Internet wasn’t heard of back then no social media no one to chat to about stomas or Crohns, stoma nurses wasn’t heard of either it was very hard and I felt all alone and very low. Things have changed a lot and it’s great to be able to chat with people in same boat. It is getting better and even people you talk to on the street friends etc all seem to know what a stoma is. 
  • Cress
    Cress Member Posts: 968 Pioneering
    I actually read up a bit on the subject after hearing of how people coped with them on this site.

    I remember a while back a young lady being photographed in crop tops etc with her stoma bag  and she was very much wanting to raise awareness and to try and break the taboo around the subject as it were.
  • rubin16
    rubin16 Member Posts: 159 Pioneering
    I've had an ileostomy off and on for 10 years, as had my first one reversed and now have my second one which I'm not having reversed as having a stoma has kept me somewhat well, and last time I had it reversed I nearly died from crohn's complecations so don't want to take the risk again, thats if even I have enough bowel for a reversal as most of mine has been removed.

    I feel embrassed when it comes to my stoma which adds to my already bad social anxiety, I wear baggy clothes so you can't tell I have one, I never take my shirt off. I always worry where the nearest toilet is and limit myself going certain places becuase of lack of toilets. On the very rare occasion I do go out, I take an emergency bag with me with spare supplies and underwear.
  • chiarieds
    chiarieds Community Co-Production Group Posts: 10,612 Disability Gamechanger
    I was with my Mum literally every step of the way, from her telling me that she'd been to our GP twice over several months, & he'd dismissed her rectal bleeding as 'well these things can happen when your menopausal!' It was nearly 50 years ago, & I was a first year physio student. I went with her to her next GP visit, & insisted something was wrong, & she got a referral to a specialist, who diagnosed rectal cancer.
    Yes, things have thankfully changed, but back then my Mum insisted on reading a guide I had to various surgeries, which included colostomy, that's all the info we had.
    When she was recovering from surgery, I used to walk from the hospital where I was training, across the city, to her hospital. Still in uniform, I therefore got to also see my Mum outside of visiting hours. After abdominal surgery many suffer with wind, & after helping my Mum with chest physio on the back which relieved this, I was much in demand by other patients in the Day Room. If a nurse walked in, they just said, 'Oh the physio's here,' & left. Good job there was nothing about my uniform to show I was just a student!
    Once home, my Mum showed me her stoma, when her skin got irritated, etc. I'm proud she felt able to share everything with me. Even when my Mum didn't feel so good later on, she used to struggle a little getting onto the lounge floor, saying things like, 'I've had a stroke, how are you going to treat me?' This so I could practise for my final physio exams. Nothing much stopped her, & she saw me qualify.
    The surgeon said he was sure he'd removed 95+% of her cancer, but it returned some 4 years later. Our GP came to apologise to me after she died. She was only 61. This is why I'm passionate about bowel cancer screening, & so pleased about all the help there is now for stoma patients.
  • Cress
    Cress Member Posts: 968 Pioneering
    Your mum sounds lovely  :) 
    61 is far too young... :(


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