Living with a pancreas-related condition – where is the support?

Dora reflects on living with pancreatic insufficiency to raise awareness of the condition and of the barriers faced accessing support.

When I was diagnosed with exocrine pancreatic insufficiency (EPI), I was given enzyme replacement pills and was sent on my way. Living with EPI means more than just taking pills for the rest of my life every time I eat.

The condition, among other issues, comes with regular debilitating pain attacks so severe that I am unable to move. To handle my condition better, I started to research support for managing this long term condition.

My first call was to my gastroenterologist, who was not much help. My GP could not help, as it was not their speciality. A look around third sector organisations showed they were focusing on pancreatic cancer or primarily on other gastro-related conditions. ‘So, what now?’  I asked myself. Without help for my diet, pain management and everyday living, I started experimenting myself. I still do as I am severely missing support.

I found a Facebook group for EPI patients all around the world. I was gobsmacked when I found out that in the USA, EPI patients have a team around them who support them in managing their condition. Those who are from the UK are in the same position as I am, however, the situation seems a little bit better in England. Nevertheless, we are desperate to receive support. We share tips and good practice, but more is needed.

The Facebook peer support group is amazing. As there is no one-size-fits-all with this condition, it is invaluable to hear all the different approaches everyone takes to self manage. I learnt several techniques from my peers that help me during a flare up and I was able to support someone with tips I found work for this condition. There is always something to learn from each other and I do not know where I would be without the support of my online peers.

I would love to engage with Scottish organisations supporting pancreas patients. I would love to meet locally, or over Zoom, to share practice, to receive support, to participate in workshops, self management activities and so on, in a similar way to people with other long term conditions.

The health industry should do more. Why are we not receiving appropriate care? With EPI, it feels like we are alone. Speaking with other people living with the condition in the UK, we are generally instructed to take the standard dose of the enzymes and take paracetamol for pain. Everyone is different. This standard dose was not suitable for me. I had to change it significantly, without receiving help on how to do it.

When we are taken to hospital, we are often seen as drug dependant, because doctors look at our charts detailing that we have received opiates before to deal with the pain.

I write this piece in hope that I and the EPI community are noticed, so that we can gain the support we need to deal with our condition. I want to raise awareness so that something can be done to support us, to avoid feeling neglected and left on our own.

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