Am I Disabled Enough?

Billie At Beach

The charity, Crohn’s and Colitis UK, recently launched a movement highlighting that #NotEveryDisabilityIsVisible and this raised the ‘Am I Disabled Enough?debate amongst those of us with inflammatory bowel disease (IBD) and stomas.

I conducted a few polls on Instagram, asking people if they considered their chronic illness or stoma to be a disability. 

Out of the 259 people who answered the chronic illness poll, 55% of them categorised their illness (the majority being IBD) as a disability. Out of 168 people who answered the stoma bag poll, 52% of them defined their stoma bag as a disability. These numbers are pretty close.

I asked a further question to those who did consider themselves to be disabled: why? And many struggled to answer.

As someone who has both IBD and a stoma I find it really hard to answer this question too. Like those who took part in my poll I’m not 100% sure I can answer it definitively. On the one hand my IBD was incredibly debilitating, and when I had my ulcerative colitis (UC) infested colon, it controlled my whole life. I had to be a few steps from a bathroom at all times and if I was leaving the confines of my flat at any point I had to plan out where the best bathroom access was. I was spending an extensive amount of time in hospital and was essentially surviving, not living.

The Equality Act 2010 states:

You’re disabled under the Equality Act 2010 if you have a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities.

In relation to the definition of disabled, my UC was more of a disability than my stoma bag is.

I may be missing my large intestine and I may poop into a bag, but my quality of life is a million times better now in comparison with the days when I had my colon. The UC limited everything I did in terms of movements, senses and activities, and had a substantially negative effect on my daily life so I can clearly see how this could be considered a disability.

Having a stoma can also be classed as having a disability, but this is where I struggle. I use a disabled (or accessible, as I prefer) toilet on occasion, as is my right. However, as someone once chose to tell me when I came out of a disabled toilet – ‘I don’t look disabled’. The discerning looks, tuts, and comments I get when using these facilities over the years has led me to now avoid them if I can.

If I get a bag leak though, I have to use a disabled bathroom because there is more space than a standard cubicle.

Also, when I take my bag off it smells bad and this is easier and less embarrassing to deal with in the disabled loo than it is in the normal toilets with a row of cubicles where other people may hear or smell what I’m ‘doing’. The key to avoiding this embarrassment is awareness for illnesses such as IBD and stoma bags, particularly in young people. We have to educate the world that not every disability or illness is visible.

So, I have needs that warrant the use of certain facilities but I’m more able now than I was when I had my UC infested colon; my ostomy doesn’t limit my movement, senses or activities in the same magnitude that my UC infested colon did.

Thanks to my stoma I’m able to do so much more now, and there’s a part of me that feels a little uncomfortable saying I am disabled.

This is because, like many others with a stoma who answered my poll, they associate a disability as something that inhibits your ability to go about daily life and they don’t see their stoma as something that stops them from doing anything. For me, identifying as disabled would mean I see my stoma as something that inhibits my ability to go about a normal life, and I want to show everyone that having a stoma bag doesn’t stop you from doing the things that you love. Even though I poo into a bag, my life has actually changed for the better.

I feel like it’s my job to show the world, being different isn’t a bad thing.

In my opinion, if I were to categorise my stoma as a disability, I would be contradicting this. I don’t want my use of stoma bags to define me or put me into a specific box. It’s a huge part of my life and I’m very proud of what I’ve done but I am more than just, the girl with the bag and I feel like placing myself in the bracket of disabled, means my bag defines who I am.

It’s something I wrestle with on a daily basis, but if you choose to identify either your chronic illness or stoma as a disability, then you are obviously within your rights to do so.

There isn’t a right or wrong answer; it is a completely personal journey. I associate my IBD as a disability due to the debilitating impact it had on my life, and when I compare that part of my life to now, my life is considerably better, I am more able with my bag than without it. 

55% of people asked, count their IBD as a disability, whilst only 52% of those with a stoma do – based on poll by Billie Anderson

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by Billie Anderson

Billie Anderson

About the author

My name is Billie Anderson, I'm in my twenties and study history at Portsmouth. I was diagnosed with Ulcerative Colitis in 2017 and after a year of very aggressive drug therapy, I became an ostomate. To help raise IBD and stoma awareness I started a blog https://trustyourgut.blog and an Instagram account @billieandersonx.

This is my attempt to make my very unconventional stomach, conventional. I hope to show the world that you can love yourself - with your insides on the outside.

Recent Comments

  • Barbara Butler

    I totally agree with your comments.

  • Donna Clark

    I view having an ileostomy bag a disability both physically and mentally! I never know when it’s going to leak and I can only eat certain foods because they clog the stoma and makes bag come loose. I have to wear plastic wrap around myself in shower and swimming and besides all this it’s very expensive,

    • SecuriCare_Team

      Hi Donna, you shouldn't have to wear plastic around yourself when washing or swimming. There are waterproof pouches available, waterproof flange extenders for extra security, and some people with a colostomy or ileostomy may be able to use a stoma cap which is ideal for short-term wear. Some ostomates also buy a waterproof pouch cover to wear over their bag. We hope that helps :)

  • Andy mockridge

    I have just got my stoma because of cancer, to me this is life changing for me, I am also asmatic and suffer with psarratic arthritis I have skin issues and some painful joints. None of these ailments are vissable but I find life mentally challenging and physically difficult, also my stoma bag does leak if I have a shower.
    Andy Mockridge

    • SecuriCare_Team

      Hi Andy, adjusting to life with a stoma can be really challenging. You are most welcome to call our team if you are in need of some friendly advice or support. We can also advise on how to prevent leaks. Call 0808 256 5400 and we'd be happy to help.

  • Jerrit Sutton

    I have had my stoma for a little over a year. I can wrestle around with the kids, or it will come off. At work i cant pickup anything heavy. I dont think of swimming at all, i have tried alot of different bags, and waffers, even the extenders. All of it. After i change it it starts peeling off 6 hrs later. I carry medical tape with me just in case. It has really limited me on what i used to do. Not include'n dehydration durn the summer months. I wear a belt all the time, and the rings, i still have leaks.

    • SecuriCare_Team

      Hello Jerrit, you are welcome to call the team to discuss solutions that may be able to help you avoid stoma pouch leaks. They'd be happy to help: 0808 256 5400

  • Alan

    Ive had mine for five years.try out different bags.i use a drainable bag change it twice a week.ocasionly comes unstuck.this probably sound stupid but try this.before you take your old bag off fold your new bag in half and put it under your armpit.the heat from under your arm makes the glue on the bag stick better.or use a hairdryer on a low heat setting to make the glue tacky on the bag.but most important make sure you clean and dry round the stoma before you put the new bag on .i use ostoguard no sting barrier fim with lavender oil wipes.hope this helps let me know if it works.

  • Frances Baugh

    I worked with kids,l was the lead teacher in an infant's room and don't see my self being able to do it again, there is a lot of movement and lifting, bending, pulling, pushing, holding the babies along with standing and walking, it's a lot of work working with children,a lot of people don't see it that way.lt hurts getting hit on your stoma and trying to get to a bathroom when working not good. I have been out of work, started April 2018 and still out May 2020 , this all started with having the removal of pasterior vaginal mash with rectocele repair thought ok but no l have had four more rectoragial fistulas w/ cystoscopy w/ calibration repairs so five surgeries in less than two years, well this lead me to getting a nice new friend the stoma,l had a loop ielostomy so my intestines could heal.Well now I am waiting on at least three more surgeries. I am do to have two done by two different surgeon's on the same day (5-27-20) one to fix a hole l have from my rectom to my vagina and then to fix another rectoragial fistulas two years.Well then we hope this will work and heal and the ileostomy can be reversed so stil mouths of healing. I have been though so much in the past two years .l have applied for disable and waiting to see if I will get it.So yes I think at this time I should be able to get disable.

  • David Farrell

    I can feel everyone’s pain I served 22 years in the army served in pretty much all operational tours Afghan/ Iraq/ Northern Ireland and so on I thought I was very fit until diagnosed with stage 3 bowel cancer I now have a stoma and lots of medical problems I try to get on with life but it is difficult with a stoma and have just been told this is now for life so I have served my country for 22 years and told having a stoma is not a disability??

  • John Dowson

    Hi, I had a complete removal of my colon and a Ileostomy performed almost 9 years ago following a burst of the colon and a massive blood loss. The hospital recommended a Dansac bag for my stoma. I managed with this type for 6 years, many times the adhesive failed with leaks, messy bed usually happened at night.If I kept bag on for 2/3 days emptying as necessary. Had to use adhesive removed spray and it was not easy to get adhesive off skin around stoma to fit new bag. I had an out of the blue email from Coloplast to try free offer of one of their bags called "Sensura Mio". I have never had a leak since using them, never comes unstuck, never leaves adhesive on skin when removed, no longer have to use adhesive remover spray. Bag so comfortable that apart from emptying I even forget I'm wearing it. Would be so easy to forget to change bag, I have a couple of times worn bag for a week before changing, also for some reason, no smells emitting from filter. Absolutely fantastic. John

  • Ego brew

    I totally feel with all of you. I am a 23 year old woman in March 2020 I was diagnosed with stage 3b colorectal cancer and had surgery 3 weeks Later that left me with an ileostomy. I was put from being an active teacher to relying on everyone else to help me. I suppose I am lucky that I always had my products from coloplast charters in the last year I could say it only leaked about four times, but I do struggle with ballooning (in case your unsure of what that means it’s when the bag blows up) and was wandering if anyone could help.

  • Caron

    I had emergency surgery on the 17th of February this year & has left me with a hernia which the surgeon has said I will have to have surgery on this will it be a long recovery?

  • Gavin Nolan

    Hi, I have a stoma due to being diagnosed with cancer. I initially had Chemo and Radiotherapy that put me in remission for 6 months. Unfortunately, the Cancer came back so I had to have the operation.

    Regarding the survey at the top of this page, I would be interested on comparing the results with the reason people had to have the bags. From personal experience, the people I have spoken to have a difference of opinion but this does seem to impacted on their medical history. I have to admit I have not spoken to loads of people, but the ones I have, seem to be of the opinion that if you have suffered with IBS or anything that has caused you pain, discomfort or the bowel issue has impacted you by restricting your movements (due to needing to be near a toilet) the bag has been welcomed, and not seen as a disability. With people that have had the shock of being diagnosed with Cancer or similar, tend to see the negative (like me) that is does restrict you, so are more inclined to see the stoma as a disability. I would hazard a guess this is because we have not been restricted by any symptoms, so the bag may have saved our lives, but does make day to day life a little harder.

    Out of curiosity, does anyone know if this qualifies for PIP?

  • Sylvia Jeffery

    and agree with them. You do have to build your day around toilets when uv got no bowl left. But I’m still alive and I know people who are end of life so thank you God. Xxxx

  • Lynda

    Hi,
    I have recently had stoma, about 3months ago,due to cancer.l did not have much of a warning regarding this , knew nothing of stoma and still very Nieve.But I’m so grateful to be here today!!.But I do understand we’re other people’s are coming from, it does change our life style,as we are restricted slightly, all depending on how active we are. I personally am very active person , am also a very positive one so I’m just adapting to the changes. Just bought a large stretchy stoma belt which I find helps a lot with movement👍& exercise. (Don’t even know I got it on)
    What I am interested in, I would appreciate it if anyone has flown, short flight & long haul flights ?any tips please.(As I Won’t go if I think bag is going to blow out ). And security checks ect?Any tips at all .
    Thankyou lynda

  • Hazel

    I have had my ileostomy for 39 years with loads of other surgeries after this. My main problem is a hernia behind my stoma. My surgeon does not want to operate again as I have a very short bowel now. My bags fall off up to 6 times a day no my skin beneath the stoma is very red weepy and sore. My stoma nurse has tried nearly every product on the market to get something to stay on. What seems to be working “touch wood” is by putting a dressing designed for burn patients on the skin around the stoma and sticking the bag to this with extensions to the flange going onto my healthy skin. I think this might be working as my skin around my stoma is not sending me mad with itching and pain. However if I bend over from the waist my bag bursts even if there is nothing in it. I was wondering if anyone has any ideas about hernia supports as the hernia causes most of the problems I think as it inverts my stoma when it fills I am at the end of my tether. Also due to Covid I lost my job and do not feel can look for a new one until I can sort out some of the above problems. I de feel I have a disability due to all of this

    • SecuriCare_Team

      Hi Hazel, sorry to hear your hernia is causing so many problems. You may find this information about hernias helpful: www.clinimed.co.uk/stoma-care/stoma-problems/hernia
      CliniMed are our sister company and they also have a pouch designed specifically for hernias - the Aura Profile.

      Best wishes
      The SecuriCare Team

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