Wednesday, 30 May 2018

Gastroparesis and me

Imagine never being able to eat a meal. Those chips you love or the pizza you used to look forward to are now a distant memory. You suffer severe nausea with one bite of food, it’s agony when it hits your stomach. You are so full up after one mouthful that you feel you’ve eaten a three course dinner. You can no longer drink a whole glass of water. Never again being able to have a meal out or enjoy drinks with friends.

Gastroparesis according to the nhs website - Gastroparesis is a long-term (chronic) condition where the stomach can't empty itself in the normal way. Food passes through the stomach more slowly than usual.

It's thought to be the result of a problem with the nerves and muscles controlling the emptying of the stomach. 
If these nerves are damaged, the muscles of your stomach may not work properly and the movement of food can slow down.

My journey with gastroparesis began about 4 years ago. Although I had symptoms on and off for a few years before. I think it was about October time and I ate a huge biscuit in a cafe in a supermarket. Straight away I was in agony  in my stomach and I struggled to eat from that day on. It took me about 15 months to get a diagnosis in London. Mine is caused by Ehlers Danlos  syndrome.I’d tried every medication there was and my weight plummeted. In July 2015 I received my first feeding tube. Before I got it I had to go on Tpn ( a central line placed in the neck delivery nutrients into the blood) as apparently I was to weak to survive the operation. This is me the day of my surgery. Paper knickers make a great hat.

I was ok for about two months on tube feeds but then it started to become really painful. Found out after being sent to see psychologists that it was caused by my very slow bowel.My weight plummeted again. I was convinced I was dying and put my affairs in order.I then started Tpn in November 2016. I did well on tpn. It’s a major change from tube feeds as everything has to be sterile.

This was me last June 

 Three months in, I got my first infection in my picc line and blood clot. I then had a Hickman line which I accidentally pulled out with my wheelchair. My second Hickman line got mrsa and then I had sepsis and my third Hickman line got a staph infection. 

Last November I decided not to have a new Hickman line put in because I was spending so much time in hospital. It was a tough decision to make as I didn’t know how I’d survive. I got given calorie milkshakes and saw the gastro about every three months. Sadly when you come off tube feeds or tpn , the support ends. There was no one I called call if I wasn’t managing to get the calories in.

Fast forward to about March this year. I’ve been having unbearable stomach pain. I was going back and forth to the gp who just kept giving me different painkillers. Eventually one doctor decided to do a calprotectin stool test. This is a test for inflammation seen in Crohn’s disease. My came back high and I was referred for an urgent colonoscopy. That colonoscopy turned into just a plain X-
ray by the inflammatory bowel disease nurse. She said see you in three months. I saw my gastro in the meantime who dismissed my test result but said he’d order an ultrasound if my local didn’t do it. My mum rang to ask them to book it. I have no date. I went back to the gp begging for help. More painkillers that didn’t work. My weight plummeting. Agony unbearable. 

Last Sunday was the final straw and I went to a &e. I never ever go unless desperate as I have a fear of hospitals now. I went through 3 different people to tell them why I was there and eventually saw a doctor. She did bloods and urine sample and gave me painkillers. When you have a complex condition there is no where to turn. She said to come back to a special gp clinic yesterday to see a gastro. I thought finally someone might listen. I hadn’t eaten or drank for 48 hours. 

Before I went I wrote down why I was there, a brief history, diagnosis and medication. My blood sugar was very low by then and I had glucose to drink but couldn’t drink it.I saw a med student first then a doctor. A patronising doctor may I add. Said they won’t do scans as I’m young and radiation is bad. I ask if it could be gallbladder but he said it’s probably just my condition. I think I’m allowed to have something wrong that entirely not related to my condition. I had given up asking for help. Luckily he called the emergency gastro. He was nice and actually gave me a painkiller that works. I was painfree for a couple of hours last night and ate a tiny bit. Sadly I have to ration myself and I’m only able to eat a little if I take one in the evening. The doctor book me for an emergency colonoscopy and ultrasound.

I think this is the toughest fight at the moment. I don’t sleep much due to pain. I’m rarely able to eat or drink. Not sure how my body is still going. It could be down to my existing conditions but I want other things ruled out first. I could go back on tpn but it’s not going to solve the problem. I’m still going to have no quality of life. I spend my days in bed as it gets to painful to sit in my wheelchair for long. I’m horribly thin. The lowest weight I’ve ever been. I don’t sleep much due to pain. I just have to sit and wait.


  1. Hi Hayley, I hope there will be a solution to your health problems. I'm truly sorry to read how difficult it is to manage gastroparesis. I don't know anything about this condition, but it sounds very painful. Big hugs.

    1. Thankyou. I’m abit more comfortable now I’m on new painkillers x

  2. Oh Hayley...poor you... I am reading this in tears... you would thing someone could help you more... I am sure you have tried every avenue... I wish I could do something for you... life is so unfair... us with an oddd ache or pain feel hard done to...
    love your last post of your plant boxes... your little garden looks good...
    thinking of you Hayley so much...
    love Sylvie xx