Let Me Introduce Myself… – By Victoria Bartlett




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Life and Disorder – Living with Gastroparesis

I have had Gastroparesis (GP) for at least eight years, but before we were formally introduced, it was called other names, IBS, Eating Disorder, and Inflammatory Bowel Disease etc. I have been tested for all of them, basically every bit of my body that has a hole, has had something shoved up or shoved down it. But I digress.

I was diagnosed with Type 2 Diabetes, in 2009, I was a bit of a puzzle, I was suffering with hypos and hypers tingling in my fingers and hands but my HbA1c was okay. But add in a lazy GP, who thought it was all in my head, you get a condition allowed to run riot and cause maximum harm. This continued until I could not keep anything down, lost 20kg and had spent collectively seven months in hospital over 18 months.

I was finally diagnosed by Gastroenterologist, the delightful Dr I, who ordered a Gastric Emptying Study, this is a test in which you swallow “nuclear” scrambled egg, this is tracked by X-ray over a four-hour stretch. The test proved that my stomach was not emptying properly and was causing the sickness, bloating, constipation, exhaustion and pain. This was sending my BMs all over the place and making me feel very unwell. To add to my misery I was told there is no cure for GP, only a bunch of medications to control it, all with their own fun array of side effects. Having tried them all, I was now reduced to a possible future of being fed through my stomach.

But, there is one controversial treatment, left to try – a Gastric Pacemaker. About the size of a business card, it has two leads, which are attached to nerves in the body it sends electrical stimulation to the stomach, which is meant to help it empty and reduce the sickness. It may or may not work, but I have to try it.

I am lucky that I have managed to fund the pacemaker operation through my health insurance. My GI consultant Dr I and my surgeon the venerable Mr D have had to jump through quite a few fiery hoops to get permission for the operation to be performed at the Queen Elizabeth Hospital in Birmingham, as it has never been done there before. (Fortunately surgeon Mr D is a specialist in this field.) I am just waiting for the date!

The operation is not NICE, (in any sense) but by that I mean it has not yet had NHS full approval. However, NICE has now started to look at it as a procedure and that surgically makes me interesting. I am thinking about selling tickets to the operation, perhaps I should insist on a designer gown, a little D&G number maybe?

So this is me, my story, my journey, my battle, pick a cliché, and please visit me again soon, in the meantime good health to you.

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2 Comments

  1. Jade says

    Most of my family have diabetes
    Does that mean i will have diabetes ?

  2. Rosaline Wong says

    @msrosalinewong @ashtonkcj :Thank you Victoria for sharing your story on gastroparesis with us. Your personal experience resonates with my client’s. His diabtetic consultant and GPs mismanaged his condition for over 10 years. My client was diagnosed as having IBS and labelled as a non-complying diabetic. He suffered hypos and hypers which ruined his eye sight, mobility, career and life. More have to be done to raise the awareness of the health professionals.

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