Think
of a recent time you went on a shopping trip for some retail therapy.
What about a day trip with family or when you met with a friend to
do something together? What happened when you got hungry? Did you
go to a cafe and eat lunch? Did you sit on a park bench and enjoy a
picnic? Did you find a public toilet and sit on the floor to eat
your dinner? - seriously what?
Actually there are many people in the UK today who had their lunch in a public toilet because they eat through a feeding tube and there are no facilities in their town for them to eat publicly.
Most people with Gastroparesis who have feeding tubes are fed directly into their jejunum/small bowel via a pump, bypassing the stomach. However, there are a small number who feed into their stomach. They are part of a much larger group of people with feeding tubes, due to a variety of conditions, who bolus feed into their stomachs. They attach a syringe to their tube, pour a bottle of formula into the syringe and let gravity do the work. These people often need to feed this way at regular intervals throughout the day. It seems fairly easy, but what happens when they cannot do this in public because of people reacting in negative ways?
I know people who have been asked to stop feeding while in a cafe because it made other customers feel sick. Recently, I spoke to someone who had turned to using baby feeding rooms to do his bolus feeds until he was verbally attacked by a passing member of public on a number of occasions. Now he is too afraid to feed when he is out.
I am connected to a feeding pump. It is working constantly to pump a small amount of formula into my small bowel every few minutes and I carry this around with me everywhere I go. I need to stop my pump and flush my tube with water regularly to maintain my fluid levels. It's my way of having a really good drink when I'm thirsty. I can 'drink' enough to give my body the amount of fluids it needs to prevent dehydration as well as manage my POTS(Postural Orthostatic Tachycardia Syndrome), a condition that relies heavily on large volumes of fluids regularly to maintain a normal heart rate and prevent blood pressure drops. To do this I have to disconnect from my pump and slowly push sterilized water into my tube with a syringe which can take around 30 minutes. At home its not a problem, but when I am out in public, I try to find a cafe and use the time to sit and have a rest. I sometimes use this opportunity to share the 'coffee shop experience' with a friend, them drinking coffee while I have fluids via my tube. People do stare, people do say things (that I can hear) and people don't realise how uncomfortable and embarrassed it makes me feel. I have learnt to do my flushes hiding the syringe under the table, quickly pressing the button to turn the alarm off my pump when it warns me that it has been sitting idle for a few minutes while I disconnect. If I keep my eyes on the person I am with and don't look around I am not met with disapproving looks from other people who slurp their cappuccinos and glare. I am clearly ruining their lunch.
I don't want to sit on the floor of a disabled toilet to have a drink or to deal with my pump when it starts one of its twenty minute beeping frenzies. However, it is the only place I can go where I know I am safe. Safe from other people, but not safe from the insurmountable risks of accessing a J-tube in a public toilet. When I need to flush, I need a table. I have a bottle of sterilized water, anti-bacterial gel, syringes, my feeding pump, caps to attach to the bit of tube that connects me to my pump and more. Standing up or doing a flush on the move is not really an option (believe me I tried and the result was a very large wet patch on the floor and my jeans covered in pre-digested formula - which solidifies to a cat-sick coloured cement within thirty seconds of air contact). I have done my fluid flushes in a variety of public places - a public toilet, the library (made a huge mess trying to be ultra-quick and avoid the teenagers who were laughing at me), an art gallery, on a bench in the middle of a shopping centre, in the sleepwear section of Primark, in a lift (huge mess), in the car in Morrison's car park and many cafes (lots of staring, pointing and 'tutting').
Why do people react so badly? We are simple having our lunch, or a 'coffee break' just like them, only we eat and drink a little differently that's all. The reason they react that way is because they don't understand. They haven't seen it before. There is a serious lack of discussion and openness about artificial eating/tube feeding in this country and as a result there are no public facilities to cater for us. If it is not appropriate for us to 'eat' in public spaces then we need a safe, clean, private space where we can manage our feeding/fluid regimes without the risk of contaminating our feeding tubes and knowing we can do so without being attacked or made to feel ashamed of the extra body parts we have. A room, similar to a baby-feeding room, with a locked door accessible with a radar key, would give us the privacy and safety we need. A sink to wash our hands, a table to place all of our equipment and a chair for us to sit on. NO TOILET!
When I heard the story of the man who was attacked for using the baby feeding room to do his bolus feed, it broke my heart. How can we have so much media attention and campaigns filling social media about allowing mother's to breastfeed their babies in public but no one is interested in letting people have their life-sustaining fluids through a tube without having to sit in a urine soaked room?
I have written to my local MP in the hope that we can have a suitable, safe space in my local town for people who need it (**Watch this space**). I hope that in the future, all towns in the UK have a similar space and that no one who depends on a feeding tube to sustain life, has to be asked to stop 'eating' in public again.
Actually there are many people in the UK today who had their lunch in a public toilet because they eat through a feeding tube and there are no facilities in their town for them to eat publicly.
Most people with Gastroparesis who have feeding tubes are fed directly into their jejunum/small bowel via a pump, bypassing the stomach. However, there are a small number who feed into their stomach. They are part of a much larger group of people with feeding tubes, due to a variety of conditions, who bolus feed into their stomachs. They attach a syringe to their tube, pour a bottle of formula into the syringe and let gravity do the work. These people often need to feed this way at regular intervals throughout the day. It seems fairly easy, but what happens when they cannot do this in public because of people reacting in negative ways?
I know people who have been asked to stop feeding while in a cafe because it made other customers feel sick. Recently, I spoke to someone who had turned to using baby feeding rooms to do his bolus feeds until he was verbally attacked by a passing member of public on a number of occasions. Now he is too afraid to feed when he is out.
I am connected to a feeding pump. It is working constantly to pump a small amount of formula into my small bowel every few minutes and I carry this around with me everywhere I go. I need to stop my pump and flush my tube with water regularly to maintain my fluid levels. It's my way of having a really good drink when I'm thirsty. I can 'drink' enough to give my body the amount of fluids it needs to prevent dehydration as well as manage my POTS(Postural Orthostatic Tachycardia Syndrome), a condition that relies heavily on large volumes of fluids regularly to maintain a normal heart rate and prevent blood pressure drops. To do this I have to disconnect from my pump and slowly push sterilized water into my tube with a syringe which can take around 30 minutes. At home its not a problem, but when I am out in public, I try to find a cafe and use the time to sit and have a rest. I sometimes use this opportunity to share the 'coffee shop experience' with a friend, them drinking coffee while I have fluids via my tube. People do stare, people do say things (that I can hear) and people don't realise how uncomfortable and embarrassed it makes me feel. I have learnt to do my flushes hiding the syringe under the table, quickly pressing the button to turn the alarm off my pump when it warns me that it has been sitting idle for a few minutes while I disconnect. If I keep my eyes on the person I am with and don't look around I am not met with disapproving looks from other people who slurp their cappuccinos and glare. I am clearly ruining their lunch.
I don't want to sit on the floor of a disabled toilet to have a drink or to deal with my pump when it starts one of its twenty minute beeping frenzies. However, it is the only place I can go where I know I am safe. Safe from other people, but not safe from the insurmountable risks of accessing a J-tube in a public toilet. When I need to flush, I need a table. I have a bottle of sterilized water, anti-bacterial gel, syringes, my feeding pump, caps to attach to the bit of tube that connects me to my pump and more. Standing up or doing a flush on the move is not really an option (believe me I tried and the result was a very large wet patch on the floor and my jeans covered in pre-digested formula - which solidifies to a cat-sick coloured cement within thirty seconds of air contact). I have done my fluid flushes in a variety of public places - a public toilet, the library (made a huge mess trying to be ultra-quick and avoid the teenagers who were laughing at me), an art gallery, on a bench in the middle of a shopping centre, in the sleepwear section of Primark, in a lift (huge mess), in the car in Morrison's car park and many cafes (lots of staring, pointing and 'tutting').
Why do people react so badly? We are simple having our lunch, or a 'coffee break' just like them, only we eat and drink a little differently that's all. The reason they react that way is because they don't understand. They haven't seen it before. There is a serious lack of discussion and openness about artificial eating/tube feeding in this country and as a result there are no public facilities to cater for us. If it is not appropriate for us to 'eat' in public spaces then we need a safe, clean, private space where we can manage our feeding/fluid regimes without the risk of contaminating our feeding tubes and knowing we can do so without being attacked or made to feel ashamed of the extra body parts we have. A room, similar to a baby-feeding room, with a locked door accessible with a radar key, would give us the privacy and safety we need. A sink to wash our hands, a table to place all of our equipment and a chair for us to sit on. NO TOILET!
When I heard the story of the man who was attacked for using the baby feeding room to do his bolus feed, it broke my heart. How can we have so much media attention and campaigns filling social media about allowing mother's to breastfeed their babies in public but no one is interested in letting people have their life-sustaining fluids through a tube without having to sit in a urine soaked room?
I have written to my local MP in the hope that we can have a suitable, safe space in my local town for people who need it (**Watch this space**). I hope that in the future, all towns in the UK have a similar space and that no one who depends on a feeding tube to sustain life, has to be asked to stop 'eating' in public again.
Carrie
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