This story is part of the Guts UK Pancreatitis Awareness Campaign.
Amanda McDevitt’s Story
My name is Amanda McDevitt and I first became ill in May 2007 when I was on holiday in Portugal. I was struck down with horrendous pain and nausea. We were staying with a family who owned a luxury villa, which was fortunate as they knew the area for hospitals, doctors, etc. I had only arrived in Portugal two days before and hadn’t dropped a touch of alcohol; I must state I wasn’t a big drinker anyway.
After trying to manage the pain and symptoms for a day or so I went to A&E. I had blood tests done, was put on a morphine drip, and had X-rays of my chest taken. All came back clear and the doctor said it could be food poisoning. I was sent on my way with painkillers and for the next week I stayed in bed trying to manage my pain. It subsided towards the end of my holiday and when I returned back to UK I was fine. I stupidly never followed my symptoms up with my GP.
I had a few months free from symptoms but in September 2007 the pain and symptoms returned. We were undergoing a restructure at work and I was in the process of moving house. Again I was bedridden and this time went to A&E. Similar to last time my bloods didn’t show anything and I was sent away. I was told on a number of occasions to go home and that there was nothing seriously wrong with me. This pattern of events continued as the attacks became more frequent and eventually I underwent an ultrasound scan in February 2008, which showed my pancreas was inflamed and stones present in the ducts. Subsequently I saw specialists at my local hospital and at a national centre, and received my diagnosis of chronic pancreatitis.
As months went by I became more ill. The consultants and now surgeons tried numerous things to try and help manage my symptoms: failed ERCPS, Freys procedure (drainage surgery to remove the stones and damaged pancreatic tissue), wound debridement six weeks after my Freys – causing me another 2 weeks in hospital, Celiac Plexus Blocks, NJ (nasojejunal) and PEGJ (percutaneous endoscopic gastro-jejunostomy) feeding to rest the pancreas, large quantities of opiates, etc. Nothing has really worked.
Whilst all this was going on I lost friends, they just couldn’t understand why I was ill and couldn’t get better. Relationships with family became increasingly difficult and I also lost my job – I was a Head of Faculty to a large curriculum area in the college. All in all 2012 was one the worst years of my life – I was in a very dark place. Fortunately because I was a teacher, I was medically retired, which did help us with our finances a bit.
A turning point for me at the end of 2012 was attending a pain management course. It helped me come to terms with the fact that I was never going to get ‘better’ in the technical sense but life didn’t have to be all about grieving for my former life and self. It was ok to develop a new different life. And this is what I did. I started attending art classes once a week where I met new friends and started to become more confident in social situations. I’m rubbish at art and still am but that really helped my self esteem and showed me that there were other things out there I could occupy myself with other than work. Work until I left was everything to me, it was who I was.
I became more involved, when I could, with my son’s school, which also led me on to meeting other mums and forming friendships. I became more adventurous with travel too – I began driving again – I had lost confidence previously but also was on too high amounts of opiates to drive, so I stopped and hadn’t driven for two years. The pain management course had showed me opiates really weren’t the answer, for me the side effects outweighed the benefits and so I tapered off them all (fentanyl, oxynorm, etc). I still take codeine and occasionally tramadol but if I do start to increase my doses I taper it off again. We also started going abroad again, I had been worried about being ill and this had stopped me doing so many things. We went to Florida in 2015 and in 2017 we went to Canada.
Miraculously I have had two daughters since my diagnosis, a two year old and a seven month old. This hasn’t been easy with my health and both pregnancies/births have been hard but I’ve got through it and the girls really do give me something to live for. I am awaiting more surgery again and I am far from being well. I live in daily pain along with the other symptoms I suffer from but life is good. If I never had chronic pancreatitis and had to give up work I would never have gone on to have two more children and for that I am blessed. I’ve also made some great online friends with pancreatitis and I am also an administrator on a Facebook pancreatic support group. Everything happens for a reason, I do truly believe this.
What can you do?
Join in our Kranky Panky Weekend fun and fundraise for more pancreatitis research with Guts UK. Check out some of our fun ideas here!
Or join Team Guts UK for 2019 challenges! We have places, so come on board! If you want to run Vitality Half Marathon, March 10th 2019 or cycle in Prudential Ride London 100 August 4th 2019 register here. Let’s go!