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'Have a stoma and live or don't have one and die' | 'Have a stoma and live or don't have one and die' |
(about 7 hours later) | |
Imagine being told that you have a life-threatening illness. Imagine having to relearn how to carry out previously straightforward tasks such as using a public toilet. Imagine not only having to come to terms with all of this but also facing hostility because you have a hidden disability. | Imagine being told that you have a life-threatening illness. Imagine having to relearn how to carry out previously straightforward tasks such as using a public toilet. Imagine not only having to come to terms with all of this but also facing hostility because you have a hidden disability. |
Natalie Toper from London knows all about this. | Natalie Toper from London knows all about this. |
Three years ago, just before her 32nd birthday, Natalie was diagnosed with late-stage bowel and rectal cancer. | Three years ago, just before her 32nd birthday, Natalie was diagnosed with late-stage bowel and rectal cancer. |
She was told she would need an ileostomy, an operation involving the small intestine being diverted through an opening - or stoma - in the abdomen. A bag is then placed over the stoma to collect liquid and waste. | |
The procedure can either be temporary or permanent. | The procedure can either be temporary or permanent. |
Before she even met the stoma nurses who would provide support, she was simply handed a stoma bag sample and told she would need to wear one permanently, for the rest her life. | Before she even met the stoma nurses who would provide support, she was simply handed a stoma bag sample and told she would need to wear one permanently, for the rest her life. |
She had her operation in May 2014 - a date she commemorates each year with what she terms a "stomaversary" card. | She had her operation in May 2014 - a date she commemorates each year with what she terms a "stomaversary" card. |
Deciding to do her own research, Natalie was horrified, disgusted and angry. | Deciding to do her own research, Natalie was horrified, disgusted and angry. |
"I felt like I was being punished for a crime I didn't know I had committed," she recalls. "But the choices were, 'Have a stoma and live or don't have one and die, and die quickly.'" | "I felt like I was being punished for a crime I didn't know I had committed," she recalls. "But the choices were, 'Have a stoma and live or don't have one and die, and die quickly.'" |
Natalie opted for the former but discovered some new challenges, such as travelling on crowded public transport, especially when trying to get a disabled seat. | Natalie opted for the former but discovered some new challenges, such as travelling on crowded public transport, especially when trying to get a disabled seat. |
Another is the need to carry around a large amount of sanitary equipment when out and about. As well as a stoma ring, which protects the skin, and a bag, the kit may include medical grade wipes, skin protector and a rubbish bag. | |
Finding somewhere hygienic to change is often a major problem. | Finding somewhere hygienic to change is often a major problem. |
The mother of one says she often faces hostility when trying to use public disabled toilets. | The mother of one says she often faces hostility when trying to use public disabled toilets. |
Natalie explains: "Each and every time I have been met with verbal and physical abuse by both the able-bodied and visibly disabled communities, for trying to access facilities I am fully entitled to use." | Natalie explains: "Each and every time I have been met with verbal and physical abuse by both the able-bodied and visibly disabled communities, for trying to access facilities I am fully entitled to use." |
This has ranged from being manhandled to being rammed by disability-scooter users. | This has ranged from being manhandled to being rammed by disability-scooter users. |
She continues: "Every stomite [a person who wears a stoma] I have spoken to has experienced similar situations to myself. One of my friends even stopped going out because of the abuse." | She continues: "Every stomite [a person who wears a stoma] I have spoken to has experienced similar situations to myself. One of my friends even stopped going out because of the abuse." |
Natalie tries to get around this problem by drinking less and making sure she has put on a clean bag before going out. | Natalie tries to get around this problem by drinking less and making sure she has put on a clean bag before going out. |
However, the most difficult challenge to deal with is dating as Natalie never knows how or when to say she has a stoma. | However, the most difficult challenge to deal with is dating as Natalie never knows how or when to say she has a stoma. |
"If I am upfront and say I have a stoma at the beginning of a relationship, and explain what one actually is, men will turn their noses up and walk away," she says. | "If I am upfront and say I have a stoma at the beginning of a relationship, and explain what one actually is, men will turn their noses up and walk away," she says. |
"If I wait a while, I get accused of taking the decision to date someone like me away from them, and again they walk." | "If I wait a while, I get accused of taking the decision to date someone like me away from them, and again they walk." |
In a bid to change attitudes, Natalie has started a petition for stoma signs to be added on to disabled toilets. | In a bid to change attitudes, Natalie has started a petition for stoma signs to be added on to disabled toilets. |
Conditions are starting to improve slowly. An example is the supermarket Sainsbury's promising to make its toilets more inclusive for their customers with stomas. | Conditions are starting to improve slowly. An example is the supermarket Sainsbury's promising to make its toilets more inclusive for their customers with stomas. |
Natalie says she fears if she doesn't campaign on the issue, no-one else will. | Natalie says she fears if she doesn't campaign on the issue, no-one else will. |
By Bernadette McCague, UGC and Social News team | By Bernadette McCague, UGC and Social News team |
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