DIARY ENTRIES #3
Be Patient.
words : Melissa Adams VanHouten
Though this is not typical of those with Gastroparesis, my symptoms came on suddenly.
Overnight, really.
One day I was fine and able to eat anything I pleased, and the next morning I awoke to non-stop vomiting and excruciating stomach and abdominal pain.
Again, although this is not necessarily typical, I didn’t have much difficulty getting a diagnosis.
I was admitted to hospital at the onset of my symptoms,...
...And within three days, I was diagnosed.
#ttdBePatient
#Gastroparesis
I'd been instructed to follow-up with a Gastroenterologist
in six weeks,
but I knew if I waited,
I would be back in the ER
– or worse.
I did have to undergo numerous tests (a CT scan, an endoscopy, blood work and a few others) but I was diagnosed quickly.
I left the hospital with very little information about Gastroparesis.
I was given a one-page diet to follow and told I would gradually work my way up from liquids to soft foods, and then to solids.
I believed I would simply need to avoid high-fat, high-fibre foods.
Within days of leaving the hospital, the vomiting and pain began again
even worse than before.
I had been instructed to follow-up with a Gastroenterologist (doctors who specialise in diagnosing and treating disorders connected to the digestive system) in six weeks, but I knew if I waited, I would be back in the ER – or worse.
I got an emergency appointment with my Gastro doctor and was put on a prokinetic medication (that work on the oesophageal sphincter and help the stomach empty itself to help guard against acid reflux - what some call 'heart burn').
It truly saved my life.
I started on a very low dosage and gradually increased this. The medication has not been a cure by any stretch of the imagination, but it has allowed me to function enough to make it though the day.
I still have pain and nausea when I eat, but the vomiting has stopped, and I am able to tolerate liquids and a few soft foods.
In the past I have tried Erythromycin, Zofran, Phenergan, Xiffaxan (for suspected SIBO) and a medical food called ‘EnteraGam.
I currently take Domperidone, which is available through the FDA’s Investigational New Drug Program (IND).
Domperidone is the only medication that has helped.
I’ve tried digestive enzymes, which had a very harmful effect upon me.
I’ve also tried ginger peppermint, chicory, turmeric, dandelion root, aloe vera, apple cider vinegar, IBGard and GDGard.
Though none of these have caused any harm, they have not been of any noticeable help, either.
I’m not sure if probiotics help, but I am convinced from reviewing studies that they might have a positive impact, so I choose to continue using them.
Other than Domperidone, Ibergast is the only product that has helped at all, and its effects on my symptoms are minor.
My heating pad is my best friend, as it helps with pain.
Tubie or
Not Tubie?
I don’t have any feeding tube, but of course I worry about them being part of my future if and when my illness progresses.
I can tolerate all liquids and a few soft foods (such as sugar-free pudding, yoghurt, purees and soups). I have not had anything resembling a meal, small or otherwise, in more than three years.
I take a few bites or sips over the course of the day and struggle to get in more than
500 calories
or so.
My best advice is to be patient with yourself. You will learn over time what you can and cannot tolerate. Keeping a food / liquids / activity / symptoms diary helps.
That way, you can track your reactions over time and can share them with your doctors if desired.
I would caution anyone living with a chronic condition like Gastroparesis to be ready for the emotional and mental toll this condition will take on your life.
It is a difficult illness and it can become frustrating and isolating.
A positive attitude, a willingness to seek and accept help from others, and a strong reliable support system are invaluable.
This is a chronic illness with no cure and few reliable, effective treatments, but you must never give up seeking answers and treatments.
But the stress, isolation, judgement from others who refuse to take our symptoms seriously and general misunderstandings are far harder to endure.
We are human beings with hopes, dreams and goals.
Our ‘new’ lives may not be the lives we planned, but they still have value and meaning.
We are human beings with hopes, dreams and goals.
Our ‘new’ lives may not
be the lives still have
value and meaning.
Please recognise that we did not cause our illness, we do not welcome it, we do not use it as an excuse to avoid doing things.
We would gladly rid ourselves of it if we could.
We do the best we can to make it through the long difficult days...
...And we appreciate your
support and compassion.
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words submitted in 2017
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DIARY ENTRY #4
Be Kind
Gastroparesis warrior and return writer, Kristin George,
on her GP journey and the hurtful things people say to her that remind
us to Be Kind to those with life-changing and life-threatening illnesses.
