Gastroparesis.

Gastroparesis, literally translated meaning “stomach paralysis”, is a digestive disorder where the stomach cannot empty itself of food normally. Emptying of the stomach is slowed down which is thought to be due to the nerves and muscles controlling gastric emptying. It commonly occurs amongst diabetic patients and also secondarily to EDS.

I’ve had stomach issues and overwhelming nausea for a long while, but since the formation of my ileostomy in April 2018 I’ve had severe vomiting after eating anything. When these symptoms first worsened I was admitted to hospital, and the gastro consultant that I had at the time asked the health care assistants to watch me as she thought I was making myself sick. Suffering with emetophobia and having more than enough physical health issues as it is, that was the last thing I’d be doing, so I allowed them to watch me eat and vomit day and night, a very miserable existence.

The gastro consultant, still not believing me about what was going on, then sent a specialist nurse round to start hypnotherapy and acupuncture with me as she thought it was ‘in my head’. Desperate for help, I just gave my all to the treatments she suggested as, I didn’t mind what was causing my symptoms, I just wanted it to stop.

When I lost a large proportion of my body weight, it was decided that an intervention needed to happen and so an NG tube was inserted. No matter how slow the feed was run, I still vomited so I was being fed continuously over 24-hours without ever being able to finish my feed for the day as I had to keep on pausing it when I was feeling very or being sick.

We eventually managed to get my weight stabilised, and a new antiemetic was started which seemed to be controlling my vomiting slightly better than it had been. After an 8 week admission I was discharged back home to try to readjust to life with an ileostomy and these worsening gastroenterology symptoms with no real professional ‘support’.

Things were manageable for a while, and I continued to see the consultant for over a year where she just continuously told me my issues were ‘in my head’, but then was unable to offer any help to me. I was absolutely beside myself, and as my symptoms were deteriorating my Mum and carers were attending appointments with me presenting food diaries showing just a few boiled sweets being eaten here and there, and the consultant said she was going to do an NJ tube, then when I chased it up had changed her mind.

The consultant said that she wasn’t doing anything as my weight only dropped slightly and I’m not underweight. This angers me as I’m on medications which have restricted my weight loss such as steroids; so, despite being dehydrated and malnourished with countless deficiencies nothing was being done.

Over the years, I had tried three times to have a gastric emptying study, but because I was made to stop all anti-emetics beforehand, I vomited the radioactive substance and so the test couldn’t be completed.

I then managed (fought) to get a referral to Dr Hayee at King’s College Hospital, a consultant gastroenterologist, whom listened about my previous issues, and referred me for another gastric emptying study before I saw him but allowed me to inject my antiemetics as usual so we could hopefully get some results to find out what was going on.

I finally got the results when I saw Dr Hayee recently, and the test has proven that I have severe Gastroparesis. I was so overwhelmed I cried when I got the results; years of not being believed, not being supported medically, fighting for everything and battling these horrendous symptoms with no intervention I finally had it confirmed that it was Gastroparesis and not me making myself sick nor in my head. Whilst I had suspected it was Gastroparesis throughout, having it confirmed just really hit home; part of me was relieved that I finally had the cause of my symptoms confirmed and I was being believed by Dr Hayee, whilst the other part of me felt totally devastated that this chronic condition had been formally diagnosed, there’s no cure or quick fix, I’ve exhausted a lot of treatment options with no success, and my symptoms are just deteriorating.

Gastroparesis has limited treatment options which include dietary changes, anti-emetic medication, Botox or a feeding tube. Dr Hayee mentioned short term NJ feeding if need be, whilst I wait for G-POEM surgery which he would like to perform. This stands for ‘Gastric Peroral Endoscopic Myotomy’.

This operation involves cutting the sphincter muscle at the bottom of the stomach to stop it from opening and closing properly, increasing gastric emptying time. This is a huge decision for me to make, as only 30 of these operations have been performed in this country so far. This means that whilst the mid-term results are promising, the long-term outcome is unclear and my gastric anatomy would be altered without the long term impacts being known. Dr Hayee also can’t tell me to which extent this surgery will benefit me – Out of all 30 cases, only 1 has had no benefit at all, but others have varying degrees of success. Some have been able to cut down on anti-emetics without vomiting, others have been able to stop them all together. Dr Hayee’s hope is that it’ll stop me vomiting and reduce the nausea, but I’ll most likely still suffer at-least the pain and bloating.

It’s such a difficult decision as I’m desperately trying to avoid tube feeding if I can, at-least long term. I’ve exhausted most anti-emetics, the nausea is overwhelming and I’m relying on injecting IM Cyclizine to try to keep anything down which then, if I don’t vomit, results in severe pain and bloating. My symptoms are worsening and I can’t cope but I’m not sure how I feel about this novel irreversible surgery which could hugely improve my quality or life, but could also have no impact or a detrimental impact long term.

This is a decision that can’t be taken lightly, but it’s something I’m going to have to think long and hard about as I can’t manage for much longer with the way things are.

Still… after years of being disbelieved, unsupported and left to deal with my symptoms alone, I finally have an answer. It’s been confirmed. I have Gastroparesis.

19 thoughts on “Gastroparesis.

  1. I find it so shocking that some doctors don’t listen properly & the lack of belief or compassion of the gastro consultant you saw borders on gross misconduct when you were so sick!

    I’m glad you’ve actually got a diagnosis now but sad there are no easy solutions. I know you’ll do your research & wish you well in whatever you decide is best for you next.

    Liked by 1 person

  2. I am in the US and am having a form of the POP, which has been performed for approximately 20 years. I would be happy to share what my surgeon told me about the procedure, if you want to message me on Facebook. My name on Facebook is Desiree Michelina

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  3. Good news from me. My mission to get chocolate bars is complete so you’d better get that op done so you can chomp away on chocolate. Leaving Singapore today for home so will post them to you this week. Love Ann x

    Liked by 1 person

  4. It’s so unfair that you weren’t believed for so long, sadly I’ve known this to happen before and it can have a huge effect on mental health let alone all the battles being faced physically as well! If it was one of their own family members, I’m pretty sure they wouldn’t assume it’s all ‘in their head’ as a first option, so why treat anyone else that way. Anyway at least you have a confirmed diagnosis and, as difficult as it may be, you can move forward now with your decisions based on that. If you ever want to ask any advice then you know where I am. Love you warrior beauty xxxxxxxx

    Liked by 1 person

  5. I just wanted to say hi, I’m a fellow GP patient. I’m so sorry you also had to go through such a long period of disbelief and accusations. I spent the whole of my 15th year and half of my 16th being told I was anorexic and forcing myself to be sick. I was force fed and the punished when I would turn off my pump. I was threatened with a colostomy bag if I didn’t take my feeds and told that if the j tube didn’t work/I didn’t cooperate then there was nothing else and I would die. I dropped from a healthy 55kilos to about 43 and was massively malnourished before I transferred to adults and a much much better team in London and finally given TPN. good luck in your gastro journey, whatever surgical decision you make in the end I hope for the best outcomes and that you don’t end up relying on tpn like I do. ❤️

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  6. Did your physician mention a gastric pacemaker? I have gastroparesis (caused by lupus) and was scheduled to have that performed before my Crohn’s disease got very bad. I ended up having my large intestine removed and have an ileostomy. And miraculously my gastroparesis has improved.
    But a gastric pacemaker is a much less invasive procedure and helps speed up stomach emptying.

    Liked by 1 person

    1. I’m so sorry you’ve been through all that but I’m glad your symptoms have improved. No, this consultant didn’t although I’ve read a lot about the gastric pacemaker myself as I also have a sacral nerve stimulator. I’ll have to read further into it, thank you xxx

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  7. Hello, I think it’s dreadful that you’re going through this. As an EDSer too, I have some gastric issues, but nothing like this. I didn’t get diagnosed until I was 53 and the damage was done, mainly joints. I’d like to wish you much luck and will follow your progress. As this is a writing platform, I’ll also say how engaging your story is, very well written. Best wishes.

    Liked by 1 person

  8. First, I was so sad to read your story. I know what it’s like to not be believed medically and at the time you feel like you are the only person on the planet suffering this and an answer will never be found. May I ask, have you ever taken probiotics? Your story sounds the same as I had been through, (though I have already had the surgery you mentioned), and it was the probiotics which caused the disorder. Like you, I couldn’t eat and became thin and malnourished etc. I evenrally got better but it was the probiotics which has changed the flora in my gut so it could no longer accept any food. All my good flora became bad. It was a long and very upsetting path before a gastroenterologist found the reason. Maybe I am wrong, but your story and mine is so similar the probiotics theory came to mund. Do contact me if you want more info. Hoping you are on the road to recovery! Xxx

    Liked by 1 person

    1. I’m so sorry you’ve not been believed too – it’s horrendous when all you want is some relief.
      Yes I have taken Probiotics – I didn’t know they could cause it, wow. How did the surgery go for you? Thank you so much xxx

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      1. I had my surgery back in 1990 for Crohn’s disease. It was a success and I haven’t had a problem since. However, for other health issues this is why I took the probiotics, (lowest dose, 2017). I can’t begin to tell you how ill I was.
        The doctors in A&E had no idea what was wrong and wondered if I had a blockage in my small bowel but that was clear. I was told the only way to “Prove there was nothing wrong with me was to force feed me”!
        I discharged myself.
        My GP didn’t know what was wrong though she put me on liquid prescription foods.
        Eventually the gastro specialist came up with the theory of the probiotics and bad flora in the gut. I had stopped taking the probiotics a few weeks previously but I was on my liquid diet which included milk, I stopped the milk and from that day I started to improve.
        I went from MONTHS of thinking I was going to die – to starting to improve just about overnight.
        I can now drink milk again but I do believe that the probiotics, the changed gut flora and the milk all caused my problem.
        And because this is rare the doctors didn’t know what was happening. They deal with the most likely scenario, not he least likely 😦
        I hope you are getting better!
        Do contact me privately if you want to know any more 🙂
        Sue xxx

        Liked by 1 person

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