Anneliese’s Story

Written by Anneliese | Gastroparesis Australia Founder

My name is Anneliese and I first started having symptoms of gastroparesis in 2007. My complaints of vomiting were initially dismissed as a virus or food poisoning and it wasn’t until November (2007) when I presented to ED three times within 24hrs that they decided to perform further investigations. The CT scan that they did showed an inflamed Gall Bladder and it was removed via keyhole surgery, but the vomiting did not stop there.

Eventually a Gastric Emptying Study was suggested, however, I was not able to successfully perform it as I would vomit up all the food consumed. I then fell pregnant with my second daughter and vomited the whole pregnancy, which resulted in my daughter suffering from the repercussions of my inability to eat and consistent vomiting. It was August of 2009, after she was born, that I could finally perform a Gastric Emptying Study successfully and thus be officially diagnosed with gp.

Anneliese and Sandra

As a diabetic, my endocrinologist suggested that I maintain my sugars under tight control in order to potentially alleviate the symptoms. However, this only increased the severity of my symptoms. I was then trialled on different medications (many of them did not work) and I found this difficult, especially considering that they only treated the symptoms and not the condition itself. Over this time I often felt like a guinea pig trialling each different option available. I am now allergic to 3 different anti-emetics (Droperidole, Maxalon and Stemetil) and when I flare up, I have to rotate three different anti-emetics (Ondansetron, Diazepam and Cyclazin) to avoid resistance to them. I have also trialled Botox injections to help my stomach process the food easier, but ultimately was unsuccessful. In terms of pain management, I have tried patches and tablets, with some working better than others (Tramadol and Endone for severe pain, plus daily laxatives). Now that I am on a feeding tube I find it easier to be able to put my medications down the tube when I am vomiting during a flare up. However, sometimes nothing works and that is the hardest part.

Recently I received a government grant and have had a gastric pacemaker inserted, which is classified as an experimental treatment, but it will be months before I see any of the results and, as my surgeon said, nothing is guaranteed – this is not an overnight fix!

Over the next few years I was frequently in and out of hospital (some years were worse than others), with returning home feeling more like a holiday than anything else. Inevitably these lengthy hospital stays put a strain on my husband and daughters. During this time it was also difficult finding dieticians who knew about the disease and could help me with my diet. I eventually decided to do my own research and used trial and error to find a diet that worked.

In January 2016 I ended up in ICU with Diabetic Ketoacidosis due to a flare up of gp and the doctors in hospital neglected my insulin for 8hrs. As a result, my health took a nose dive and by May I could not even keep Hydrolyte down. An NJ (nasojejunal) feeding tube was then inserted through my nose and past my stomach into my small intestine, which I can feed liquids in to for 15 – 17 hours per day. Initially I aimed to feed overnight so that I could resume work, however, it hurt my intestines and I developed severe constipation. I was very weak and the constant flare ups lead to many hospital admissions – it has turned my life upside down.

Anneliese

A good day for me is one in which I wake pain free with no nausea and am able to spend a good 2 – 3 hours with my girls shopping or going for lunch or driving places. It is also waking up and not feeling exhausted from the painsomnia of the night before.

A bad day, however, involves nausea, pain and vomiting so bad that I need to lie down to ease the symptoms. It is also taking all the medications that I can and putting Hydralyte down my tube.

I miss the small things – the energy, the family dinners, eating out and being a mum and wife. I miss working and running my own business, providing financially for my family and socialising.

I don’t know what tomorrow brings and on the bad days I can end up back in hospital because of my dehydration. The mental and emotional ramifications of this illness are far harder than the physical symptoms. I suffer from severe depression and anxiety. I have allowed the disease to change me, beat me and define me. On the dark days I loose myself as the anxiety takes over me and I have been judged for 9 years because I never “looked sick”. Until I found a support group, I had nobody to talk to who would understand, except for my husband. I felt isolated and alone. Some days I still do.

My message to those out there who don’t have gp would be – please don’t judge us! We don’t like or want to be sick. Many of us can look normal, but be hiding a pej feeding tube under our shirt. Sometimes we are fine and then in one moment have a flare up that leads to pain and vomiting lasting hours to weeks.

Often we can manage it at home, but when it gets really bad we have to go to hospital. The illness is embarrassing, debilitating and isolating, not to mention exhausting, taking away many of things that we take for granted in life.

Please do not judge a book by its cover – we are all different and it takes listening to the individual story to be able to see just a fraction of what life is like with gastroparesis.

Sadly Anneliese passed away in August of 2018. But her passion to find a cure for gastroparesis lives on in the GP Aus community. She was there for all her members, motivating them to continue their fights against the disease. Anneliese leaves behind her legacy, Gastroparesis Australia, and her inspiration to continue the fight against gastroparesis.