Gastroparesis Awareness
What is Gastroparesis ?
Gastro – Paresis literally translated ‘Stomach Paralysis’
There are three subdivisions of Gastroparesis (GP)
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Diabetic
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Idiopathic
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Post surgerical
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There are many differing symptoms experienced by those with Gastroparesis and a variety of levels of severity of those symptoms.
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Although Gastroparesis is not widely known about by health providers and general public, there is actually a lot of information available globally. It is often a case of this information requiring time and an invested interest to research. Hence the private, patient face book groups have a wealth of knowledge from experience, that health professionals are unable to access (due to privacy)
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Ruby’s Voice is a conduit between patients, families/support people and health professionals. We are sharing Ruby's story and also sharing links that will be about diagnosis, management of condition, available treatment options – including those currently available and the latest medical advances being explored. To be effective as Ruby’s Voice, we want to present information in a fact based, unemotive manner.
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Frequent comments to Ruby were to not go on google to find answers and to avoid face book forums as they are full of negativity.
Apart from being dismissive, these comments were also incorrect. An example; connecting with an Australian group we learnt that Sydney University is one of the fore runners of Gastroparesis research and in 2018 hosted Gastroparesis Symposium which was attended by reputed international Gastroenterologists from Mayo clinic and UK. Despite Ruby referring health practitioners involved in her care to view the invaluable information, on videos, from the symposium - 12 months later only one had.
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Other patients are also a wealth of knowledge as it comes from personal experience. The depth of understanding gained from discussions with those who have had similar procedures/surgeries/complications is not to be underestimated. The insinuation that it can lead to influence your own experience is another example of a damaged belief system.
The age of immediate access to knowledge via the internet for patients is the reality of now. Medical professionals don’t solely hold the knowledge.
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It is intended Ruby’s Voice will be the forum where barriers are removed and the patient becomes the centre focus of their own care.
We aim to keep the information up to date and it will cross all boundaries, traditional western to less convential therapies.
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THOUGH WE ARE FOCUSED ON RUBY'S STORY AND WHAT MANY PATIENTS GO THROUGH, THERE ARE ALSO SOME SUCCESS STORIES. WE WILL BE LINKING THESE INTO THE RECOMMENDED SITES PAGE
Exerts from Ruby's Diaries - What is Gastroparesis
Gastroparesis is delayed stomach emptying - paralysed stomach. It can be moderate to severe..It has no cure.
Food remains undigested and no nutrients are absorbed. With varying degrees of severity, every person has different experiences and food tolerances. Need to avoid all skin fruits/veges/nuts/meats - basically all good healthy food.
Processed/fast food is easier to eat. Though that vomits up as well, it sometimes in the stomach longer.
The cause of gastroparesis is unknown. often it is damage to vagus nerve during surgeries.
However, the causes of gastroparesis can include;
• Uncontrolled Diabetes
• Idiopathic - no known cause
• Gastric surgery with injury to the vagus nerve
• Medications such as narcotics and some antidepressants
• Rare conditions such as: amyloidosis(deposits of protein fibers in tissues and organs) and scleroderma (a connective tissue disorder that affects the skin, bloodvessels, skeletal muscles, and internal organs) Ehlers Danlos Syndrome.
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Symptoms:
Malnutrition
Dehydration
Fatigue
Nausea/vomiting - food undigested- vomits or ferments in stomach.
(Particularly hard to deal with when been foodie. Love cooking,
love eating. Passion 2nd to flying).
Extreme loss of weight /bloating
Extreme loss of appetite /severe starvation with sense of hunger - still have brain signals to want/need food
Pain - constant and intense
Body convulsions
Low blood pressure
Faint /dizziness
Sleep deprivation
Black out
Brain fog
Headaches
Hair loss
Sensitivity to heat/cold
Constipation/diarrhoea
Emotional:
- Remain positive and smile through it - make the most of good moments -
- Loss of the life lived prior to Gastroparesis
- Missing out on life - fun with friends - summer - can't cope with sun/heat
- Unable to work - daily functions-unable to study
- Independence lost
- Isolation - loneliness -
- Unable to socialise - even if feeling well enough most socialising done around food/drink
- Feeling judged - lack of empathy as disease not understood - unseen
- Anger/frustration
- Lack of a cure - reinforced repeatedly.
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Treatment:
Not many treatment options - trial and error to find something that suits you
If you can take them ; lots of side effects
Anti nausea
Motility drugs - some prescribed in NZ are banned in other countries
Gastric pacemakers
Feeding tubes etc
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Deemed chronic not terminal but high mortality rate from symptoms and their co morbidities due to malnutrition.
WHAT IS IT LIKE LIVING WITH THE DISEASE ? Quoted from Ruby's diary.
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You spend most of your days with your head in the toilet bowl wondering if it’ll ever end and what you ever did to deserve this.
Gastroparesis is one thing I wouldn’t wish for anyone. It sucks the life and soul out of you, you’re stuck staring into a life that you once lived, you know the things your old body can do. Its absolutely life debilitating, you lose the ability to work or study, simple things like not being able to drive and going out with friends for dinner or a drink like you used to. Even walking is a challenge. Some days you wake up ( if you’re lucky to have slept ) not knowing which way your illness will take you, if you’ll even be able to make it out of bed, if you’ll be strong enough to look at food let alone try eat something without getting nauseous and instantly put off.
One of the hardest things I find dealing with GP on a daily is that it is an invisible illness, due to the drastic weight loss most of us experience you end up with a lot of people assuming that you lost that weight on purpose, they will go out of their way to tell you how great you’re looking, so skinny but really they have no idea that you are dying on the inside. See this disease is cruel, it's the termite eating away at the wood and won’t stop until theres nothing left, GP acts the same with our body. Its a gruelling process having to accept what is happening with you but all around you comments are getting tossed around that aren’t true.. none are saying you’re sick... the assumptions are horrendous, she must depressed, she must be aneroxic, she must be on drugs.
You become consumed by an illness.
Living with the guilt of how your loved ones lives have changed
Having to exist on a sickness benefit
The way if affects your mind and takes over.
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THE REALITY
A PICTURE TELLS A THOUSAND WORDS
Morning birthday adventures in the Rescue Helicopter, kindly organised by Ben at NDHB, as Ruby was celebrating her third consecutive birthday in a hospital room! Two hours later she returned to hospital, the exhaustion hits and the mask slips
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