A Safe Space To Eat

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.

Carrie

Read.Share.Educate

What's Cooking?

It seems a strange thing to write about on a blog that is for people who physically struggle to eat, but cooking is something that can either be a Gastroparesis sufferer's worst nightmare, or their most therapeutic experience of food.

 
If you google 'Gastroparesis' and 'Cooking' you are presented with a vast array of fragile tummy-safe recipes, juicing programs and Pinterest boards filled with every variation of puréed food photographable.   What you won't find much of is people talking about the actual process and experience of cooking when you suffer from a condition that often makes just the thought of food nauseating.

 

Before I had my first feeding tube placed I could not tolerate the smell of food, never mind the look of it.  Cafes, restaurants, even the smell of a Sunday roast wafting down from my neighbour's flat above would have me running to grab my 'purple bucket'.  However, once I settled into tube-feeding (I have a tube into my jejunum/small intestine that delivers pre-digested food 24hrs/day) I can now create those food-related aromas myself in one of my favourite new past times - cooking.
 
I know what it is about cooking that I enjoy so much.  It's not the recipe solving, it's not the multi-tasking.  It's not even the result of producing a perfectly presented plate that would give the Masterchef bunch a run for their money.  It is simply being around food that makes it so pleasurable.  Touching it, smelling it and knowing it's not going to result in severe stomach pain, hours of vomiting and non-stop, gut wrenching nausea.  I can experience food, be around food and appreciate food once more - maybe not in the usual sense, but in a non-eating sense, my sense.

 

Food, or more importantly, our relationship with food, is one of the most basic fundamentals of being human.  We need food and we know that from the moment of birth.  As babies we cry until we are fed and our hunger is satisfied, when we are adults we know when to eat and what to eat.  We have a very deep, intimate relationship with food that brings us pleasure even if we are smearing it all over the walls with toddler-fuelled delight.  As babies, we experience a lot of the world around us by tasting things.  Food, and eating, is one of our most important discoveries and also our biggest non-human comforter.  We form a dependant and positive relationship with food that should be life-long.

 

When we are unable to gain pleasure from eating, that relationship is broken and the results can be very damaging.  To hate something, because it causes us pain, even though we are entirely dependant on it, causes great conflict emotionally and psychologically.  It is important to regain some form of healthy relationship where possible with food.  Cooking, for some people with Gastroparesis, is the best way they can rebuild that broken relationship and once again develop an emotionally healthy experience with food.
 
With Christmas fast approaching I have the ultimate in cooking experience to prepare for. The Christmas dinner!  However, Christmas dinner is one meal, one concoction of aromas that still churns my stomach and triggers my intense nausea.  So how can I get through one of the most difficult times of the year for a Gastroparesis sufferer and still cook?
 
As it is just my partner and myself we have opted for having our Christmas dinner a week early. That way, if cooking does make me sick, I have enough time to rest and recover before the big day itself.  Unlike people who are living with Gastroparesis while parenting children, I don't have a family placing all their Christmas cheer on my shoulders at lunchtime.

 

We have also opted for a safer meal preparation and eating experience:

 
1)No foods that I can't be around - turnip and mash potato are on my evil food list, even for cooking.

2)As I can eat a small amount on good days I will enjoy a Carrie-size portion of Carrie-safe foods while wearing my paper hat.

3)No starter or desert.  I'm just focussing on the essentials, turkey, potatoes and gravy.

4) I have a facemask should I struggle with the smells - I will look like a festive extra from Holby City.

4)My partner does the washing up - mushed up/left over food on a plate is a nausea trigger for me.

5)Plenty of time to sit and rest afterwards by ourselves so my body can digest the best it can.

6)An emergency bag of oven chips and a chicken burger in the freezer for my partner should I not manage and my Gastroparesis wins.

 

Even though we cannot often eat what we create, it is important to allow those of us who can, to cook.  We need the experience of being with food, having contact with food and dealing with food.  It is important that we are allowed to form a positive relationship with food despite not being able to enjoy eating it, in order to fulfil our basic human needs. 

 

Gastroparesis may be the end of eating for some people, but it does not mean the end of experiencing food.

 

**Update**

 

Well our (early) Christmas dinner was a success...sort of.

I managed quite well with the cooking until the turkey and pigs in blankets started to mix their aromas together.  My facemask was worn with festive pride and I had to take a combination of three different anti-nausea medications to get everything to the table.  I only got to eat half of what I had planned for myself but my partner polished off the rest with great gusto. I felt quite lousy afterwards and spent the following day in bed with my faithful purple bucket and a hot water bottle for the severe stomach pain. 

 

I’m still feeling rather tender three days later but at the end of the day I came, I cooked, I conquered!

 Read.Share.Educate

 

Carrie

Working with Gastroparesis

I'm sitting at my desk staring at the long list of orders on the screen.  The diary next to me is filling up with meetings, deadlines, and doodles of new design ideas, and a pile of parcels wrapped in  brown paper is awaiting this week's trip to the post office.
Two years ago I was bedridden, exhausted from malnutrition and struggling to even keep water down.  
I now work full time as a freelance artist and run my own business “Art of a Thousand Words”  making and selling word-art, digital art and paper-crafts. As I now sit at my work desk looking at my business page on Facebook  I wonder how on earth I did it. How did I become able to live my dream?  As I start replying to today's many emails my feeding pump starts beeping and the reality sets in.

I have Gastroparesis with panenteric dysmotility.  In basic terms it means none of my digestive system works properly.  I have problems with swallowing, my stomach doesn't empty, my small intestine is unable to breakdown and absorb many foods and my large bowel barely functions.  I am fed into my small intestine via a feeding tube 24 hours a day. I also have Ehlers Danlos Syndrome and POTS.
My carer has just left, having got me showered and dressed, while my partner carefully works out which of the dozens of medications I need that day.
After an hour or so of relying on other people to get me out of bed and meeting my basic needs, I am ready to work. As I get started today I know it's going to be a tough day and I have all my fingers and toes crossed that I will get everything done on my 'to do' list.

It hasn't been an easy journey.  It's actually been one of the hardest things I've done and some days I think I can't possibly carry on.  This is my second attempt at working since my Gastroparesis diagnosis. I tried three years ago to set up as an artist but had to give it up after six months due to the workload making me extremely ill. 

In December 2013 I was told I needed a feeding tube as I was losing too much weight and became very ill.  I had barely enough energy to sit up and was vomiting many times a day.  My stomach could not cope with food. Anything I ate just sat in my stomach for hours and the pain was unbearable. I barely felt hungry at all and rarely felt the need to eat.  I started with an Naso-Jejunal (NJ) tube which I had for 10 months.  I then had surgery to place a PEG to form a tract in my stomach so a long tube could be fed through my stomach into my small intestine as a long term treatment.  I am connected to my feeding pump 24 hours a day - yes it is heavy, yes it gets annoying, yes I have found some very nice handbags that my pump fits into.
Feeding this way means I now get the calories I need.  I am getting the nutrients my body needs and I have put on weight. I no longer look so ill and I have enough energy to function...most days. My formula is semi-elemental meaning it is partially digested so my small intestine can absorb it.  I also run bags of fluid through my tube to manage my POTS and keep myself hydrated.

I haven't been 'fixed' or cured.  I am managing.  Day-to-day life is very hard and there are many days each month where I cannot get out of bed.  I spend a lot of time at hospital and attending my local hospice for support.  There are days where I cannot manage to feed through my tube due to pain and severe nausea.  During these flare-ups I cannot work and I have to focus my limited energy on resting and waiting for my body to recover.  There is no predictability with my condition. I don't get a memo or a diary reminder that I need to book a week off work as my stomach is about to have a huge hissy fit, or my tube is going to clog leaving me in hospital for a week.  Instead I have to make the most of the good days and try my best to keep caught up with my work.
There are times when I have to contact customers and apologise as I have not been able to work on their order.  I am very lucky as my customers are very understanding. I have only had a couple who have gotten cross with me and cancelled their order.  

I have learnt many things over the past year that have now become part of my working life :

• I cannot work if I do not look after myself. I MUST pace/stick to my feed regime/avoid stress/accept help from other people.
• I must stay organised and not procrastinate.  I cannot afford the luxury of putting off something till next week if I am well enough to do it today.
• I must listen to my body. It knows me better than I do and there is no point fighting it.  If I need a week resting in bed then my work must wait.  I cannot work if I am in hospital for a month because I have pushed myself too far.
• Technology is my best friend. I now create all my work on ipad and computer. I rarely draw by hand now as it is too painful and time consuming. I can draw and paint on my ipad while laid in bed without needing extra energy to clean up a dozen paint pots and brushes at the end.
• Honesty is the best policy. People are much more understanding than we think.  I have had to cancel work meetings a number of times with the same business/client due to my health but they are usually accommodating if I am fully honest with them about the severity of my health. It is nothing to be ashamed of.
• I must build good relationships with my doctors, nurses and carers. I need them in order to be well enough to work.  It has taken years of fighting to find a team who can support me and who I can work with.  We both need honesty, transparency and trust.
• I have to be open with my doctors about my workload and work style.  If they tell me I shouldn't work for 3 weeks while recovering from surgery and I tell them I am probably going to be back at my desk within a fortnight, we can come to a compromise.  I can work from my bed or start back 2 days a week for the first month, as long as I stop and get in touch with them as soon as I have any issues.  
• I must allow myself to fail.  This is this hardest for me but has helped me the most. It is OK when I don't complete an order.  It is OK if I have to say no to a client.  It is OK if I have to admit that a project is too hard and I cannot do it.  The fact I am simply working is the success.

I love my job.  I know I am incredibly lucky and blessed to have a talent that I can earn an income from and a partner who supports me.  The majority of people with Gastroparesis who are at the severity level I am at cannot work.  I count my blessings every time I sit down at my desk.  Working from home means I can work around my condition. I can rest on a bad day and catch up at 3am when pain is keeping me awake.
I know there may come a day where my condition deteriorates too much for me to work so I make every moment count and make sure I do one thing I am proud of each working day.   The variety of my job keeps it exciting and encourages me during the tough weeks - today I am finishing book illustrations for Diverse Church and then having a meeting with a local tea room owner who would like some of my art work for her business.

Most importantly, I am grateful everyday for my medical team, my doctors and the medical breakthroughs that have led to tube-feeding.  It is because of that, and my stubbornness, that I am alive and at my desk today.

Carrie x

EVL - Prof. A. Forbes: Chronic Intestinal failure

Food, the good the bad and the ugly!

I'll bet most of the people reading this post will know where I am coming from with this one!

How many times since diagnosis has someone asked you, "Well what DO you eat?"

For me the answer is simple, "nothing" is my reply. This is quickly followed by, "Well, you MUST eat something!"

I have lost count of the times this has been said to me. I came to the conclusion that people react this way because they simply can't imagine what that might be like, so I thought I would try and explain.

No, We have not lost the ability to chew, swallow and ingest food. There are no obvious physical changes such a lumps bumps or obstructions. You can't see gastroparesis by simply taking a picture of our insides. But that doesn't mean it isn't there!

We have to learn to override one of the the strongest natural urges of the human body. You don't just eat with your mouth, you smell it you see it... you want it!

Living with gastroparesis means that instead of feeling contented and energised after eating, we feel so ill that we sit there hugging the sick bowl vowing that  we'll never touch food again! Many people describe this feeling as "permanent stomach flu". Personally, I think that doesn't even come close.

For us to be able to function at all we have to adapt to a whole new way of life. Balancing medication and nutrition is a real challenge from mild to severe cases... it doesn't matter, we are all unique.

So from day to day, we plan our activities around our regimes, avoiding or restricting food to enable us to function at all.

Imagine how it feels to be so sick that you starve your body in order to have a better quality of life? It's not out of choice... it's necessity. Give in to your urges and all hell lets loose! So please don't offer us things, or ask us why we're not eating...

We love food, but it doesn't love us!

From One World To Another

The ground beneath my feet moved suddenly. That comforting grey pavement started to crack and give way beneath me. Terror rose through my body and suddenly I was falling. Faster and faster it getting darker and darker, I was going so quickly, everything blurred into one. When I finally stopped falling, I landed on unfamiliar and uneven ground. My relief at landing was soon replaced by fear when I realised I had no idea where I was or how I was going to get through the clouds that surrounded me. I looked around and saw a faint light in the distance and I started to clamber through this unknown place using the light as my guide.
When you become chronically ill your whole world flips on its head. Everything you know, every single aspect of your life, changes. You fall without knowing where you are going to land. If you are one of the people who have a rarely known, barely researched disease, you have to fight through that cloud on your own. 

I was walking through my life with no idea that the cracks in my pavement would ever open and swallow me whole. Sociable and outgoing, I was never in the house or sat still. I was the last one to leave the dance floor and the first one to down the shots. A 20 year old girl with a big mouth and a huge cackling laugh. Then suddenly the cracks appeared, I started getting horrendous stomach pains, couldn't hold down food and just felt rotten all the time. I was in and out of hospital, having test after test, seeing doctor after doctor. I fell, I fell so fast I couldn't breathe. Life whizzed by, I was stuck falling constantly, locked in a battle with my body. Doctors weren't much use, they had no answers, most of them pushed me further down. It was one of the scariest times of my life, it was like people didn't see how bad it was, how quickly it was spiralling out of control. 

Finally when I was almost at breaking point one doctor gave me a place to land. Gastroparesis. A strange, murky place I had never heard of. I was told it was rare, I have since come across many many more people who have been thrown into this strange land who are also trying to find their way. It is these people who inspire me, who let me know that I wasn't alone and who I feel an instant connection with. We cheer each other on, give advice freely and often they become more than people, they become friends. Those who have not been to our land cannot really ever understand what we go through, the pain, the fear or feeling completely alone but we appriciate the ones that try!  

Doctors are normally seen as figures of comfort, here they are seen as intimidating. Instead of fighting with us, many of them fight against us. Just because it can not be seen doesn't mean Gastroparesis isnt real, try telling that to someone in a flare up. The nausea, the vomiting, the pain and the feeding tubes are very very real! It is hard enough to keep on going without more obstacles standing in the way. 

Becoming poorly often means leaving things behind. Your energy, your dignity and your freedom. I myself have become trapped in a weak, sick body. It is hard to fight, to walk through the clouds when you are so exhausted you feel it in your bones. When you're getting artificial nutrition and haven't tasted real food in months, yet your surrounded by food. It is something humans are hard wired to do, to eat, but no, you give that up. I have lost a lot of people I thought were friends and that was one of the most painful things of all. All of this is out of your control, it is really hard to accept. 

Stop wanting what was, and accept what is. If you are constantly thinking about what you have lost you will be too busy too notice what you have. Although you may have lost a lot what ever it may be, you will almost certainly have gained things that you may not have had you not become ill. I am much more patient these days and I will always try and accept people for who they are. I have an amazing relationship with my family and friends, my relationship is stronger than ever and myself and another patient have a charity set up to help other people just like me, who fall and land in this strange scary place. You are not alone!

Just one last thing, when you have adjusted your eyes to this new country, you too will notice that same faint light I did. Follow that light, hold on to it and chase it no matter how tired you get, it will be worth it and it will keep you going for as long as you see it. That light, that thing you must keep burning bright, is hope. Hope for a better, brighter future.


Rachel Xxx

Can You help GIFT?

We are appealing for help from any willing volunteers! Myself and Rachel have been missing in action over the last few months due to our own health battles. We need our members to get behind us and help us grow.

You don't need to make a huge commitment, there are so many ways in which you can help. We would like to start posting out bracelets for people to sell to their friends and family on behalf of GIFT. So if you would like to order some please email Natalie at : helpmeminx@yahoo.co.uk and I will get them sent out to you.

Also we are looking for people to help with compiling a newsletter and mailing list so if there are any "would be" journalists out there, please don't hesitate to contact us! If you would like to help with the newsletter on a smaller scale we welcome letters, stories and useful information from anyone who would like to have their say on the issue of Gastroparesis or intestinal failure.

I hope you are all keeping warm and well xxx

Natalie x