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.