This story is part of the Guts UK Pancreatitis Awareness Campaign.
Jade Owen’s Story
I was diagnosed with chronic pancreatitis in 2010 aged 21. I naively thought it was just a diagnosis that wouldn’t mean much in life and that after the hospital stay everything would be ok. How wrong I was! I was in the second year of university studying a Law degree at Plymouth. I was originally admitted to Plymouth hospital in my first year of university. They said they thought I might have pancreatitis but dismissed it because of my age and therefore wasn’t worth wasting the money on a scan, so they sent me home with a diagnosis of IBS.
The following year again during Fresher’s Week I was admitted to Plymouth hospital. This time they found that my liver test results were off and that my spleen was enlarged. They signed me off university until after Christmas and said I should be fine after that; my diagnosis this time was a severe case of glandular fever. I went back home, which was in Essex, and expected to be able to return to university after Christmas. Over the Christmas period I was extremely ill and my GP felt it was better if I didn’t return to university. I was signed off for the rest of the year and it was agreed I would restart year two the following academic year. I remember the day I went to clear my room: the journey was hell and I had to have a bin because I was so sick. My friends couldn’t believe how ill I looked. I was so tired and in a lot of pain and everything was such an effort, luckily my parents were there to help me clear my room otherwise it never would have got done. I said bye to everyone and thought I would be seeing them in September when life would be back to normal, but I never got to go back to Plymouth University and I’m not sure life has ever been normal again.
The next couple of months were hell, they were full of little or no sleep, pain and sickness and nausea, my life was a repeat of seeing my GP and being sent to hospital and kept in. Eventually in April the hospital decided to do a CT scan and this is when I had the diagnosis of chronic pancreatitis. I was kept in hospital a few days and sent home with some pain killers and an Outpatient’s appointment. The appointment came around and the doctor discharged me from his clinic saying I wouldn’t have any problems and that I would be fine to go back to Plymouth in September. A week after this I was admitted to hospital for two weeks, was nil by mouth and on a lot of pain killers.
Within the next three months I was in hospital six times. It became obvious that I wouldn’t be able to go back to Plymouth and so I transferred to a university in Essex and continued my degree there. It was two years of hell. I spent about two months actually being in university, the rest of the time was spent at home or in hospital, ill. My student advisor said that I should be failing with the amount of time spent off but I was passing everything with good grades. I was determined to pass my degree and get the job I wanted no matter how much pain this was causing and how miserable it was making me. In October 2012 I had my graduation ceremony and won an award from university for overcoming adversity to get a degree. Just after graduation I started a work experience placement in a solicitor’s office. I was loving life. I was having pain and sickness daily but I felt like I was getting where I wanted to be and for the first time in two years I thought I could handle this. My work experience placement was going really well, I stayed until Christmas and was asked to continue after this, with the promise of a job. In November I met my partner, he knew everything about my pancreatitis and still wanted to be with me. Finally life was looking up, pancreatitis wasn’t going to beat me! In February I ended up back in hospital, the same cycle as before: nil by mouth, pain killers and sickness. This was the first time my partner would see me at my worst but he stuck by me. Unfortunately the promise of a job disappeared: they didn’t want to know when they realised how bad my illness could be.
Over that year I was in and out of hospital again, only every time I was there seemed to be a fight to be believed. My levels don’t rise so my bloods always look fine, this seems to be the biggest hurdle to overcome and unless you get a good doctor (unfortunately there don’t seem to be many of them) they don’t seem to understand this fact and just want to wash their hands of you and send you home. Scans might show that the pancreas is damaged, however if they won’t admit you or give you a scan, you’re screwed and you just have to somehow deal with it on your own at home. Perhaps one of the biggest impacts of this illness is on your mental health. Countless times I’ve sat in front of doctors and have been asked if this is in my head, despite sitting in front of them looking ill and physically being sick! I’ve been under my Consultant from 2012 but have always felt he’s never believed how much pain I am in. He seems to think because I don’t scream and cry that I’m ok, but that’s not my style, I’ve always become reserved when I’m ill. I’d rather sit there quietly and not talk to anyone, it’s how I cope. It took him 4 years to even offer to do anything to help. However pain management was a waste of time, they gave me nerve blockers but I walked around for two weeks feeling like I had a belly full of concrete. There was no relief from the pain because they didn’t work. They wouldn’t offer me a celiac plexus block (a type of pain medication) and I was discharged from the clinic. In 2016 my Consultant tried an ERCP but this failed. He tried another two in 2017 and they also failed. He is now contemplating surgery and has also referred me to another Consultant at another hospital. The past few months have been particularly bad: I’ve been in a flare for over a month. I went through the routine of seeing the GP and being sent to hospital for them to decide not to admit me when blood tests come back ok.
Pancreatitis changes everything in life, what you can eat and what you can drink. It changes the relationships you have with people, it even changes your size and body shape on a daily basis! It’s embarrassing being on a train and offered a seat because “you shouldn’t be standing in your condition”; it’s embarrassing being asked when you’re due or if you know the sex of the baby! My confidence has been knocked massively since being diagnosed with pancreatitis. The symptoms are embarrassing, the noises your stomach make could create a musical CD. I was diagnosed with medical depression because of this and had to have counselling but I refuse to have antidepressants and take anymore medication because of pancreatitis. In 2014 I was admitted to hospital with stroke-like symptoms; however this turned out to be functional symptoms with elements of migraine. Apparently my body couldn’t cope with the pain and stress of pancreatitis any longer and that was how it managed it. I now have these symptoms whenever I get really bad!
I’ve learnt a lot through having pancreatitis. You have to fight a lot to be believed and to be treated. You can never give up, if you don’t fight for yourself the doctors won’t. However if your lucky and find one or two medical professionals that believe you, and are willing to help you and fight your corner, this means the world and you will always be grateful to them. I worked my arse off to get my degree and have a successful job but I can’t get a job. My days are spent being sick and in constant pain, strong medications make doing the simplest of tasks impossible at times. I don’t sleep and spend my days like a zombie. I’ve lost friends through this illness, stopped being invited to go out for the day or evening with people because sometimes you have to cancel. I’ve learnt how ignorant people can be. Pancreatitis sucks, it’s painful, it’s horrible, it makes you miserable and yes, pancreatitis has impacted my life, I’m not where I thought I would be at 30. I thought I’d have a brilliant job, I thought I’d have kids and be living with my partner but none of that can happen at the moment because of how ill I am.
The one thing though that pancreatitis has taught me is how lucky I am: I have amazing parents that have my back all the way, a partner who fights my corner all the time. I wouldn’t want to be the doctor who is telling me there’s nothing wrong when I don’t have the energy to argue anymore and it’s these ones who are battling for me! I have hope, hope that one day I’ll be better and somehow beat this, hope that I’ll have the job and family I want. And hope that through charities like Guts UK everyone will know about pancreatitis, everyone will know how horrible it is and how it’s not just something simple to diagnose. Yes pancreatitis has taken a lot from me and impacted my life, it changes everything but one day it will be better!
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 ideas here!
Challenge yourself for Guts UK. If you’ve been contemplating a physical challenge – be it a walk, run, cycle, non-stop boogie night or even a sponsored silence – do it for Guts UK. We’ll support you all the way!