Until 37, Donna had no idea what her pancreas was or of the vital job it has. She shares her story and explains why there needs to be more education surrounding our health.
Tell us about you
“Hi, I am Donna, 38 years old from Bolton. I am raising three children that are not biologically my own, ages eleven, five and four, so life is very busy as you can imagine! I am their legal guardian (correct terminology is Kinship Carer). I’m mostly known in our household as “Dee Dee”. They are my world and they depend on me to be the best Dee Dee I can be. Aside from busy family-life, I am also a trustee of a charity close to my heart called Kinship Carers UK, and with this experience, I would like to share my story today after seeing all the great work Guts UK are currently doing.”
Can you remember when your symptoms began?
“Vividly, yes! Two days before my eldest’s birthday, I started with pain and feeling unwell. I wanted little man to have his celebration before I sought medical advice. My body had other ideas. Four days later I was rushed to hospital by ambulance in crippling pain, vomiting, a fever, and sweating profusely. I thought I was having a heart attack.”
Talk us through your time in hospital
“After ultrasounds, CT scans, MRIs and a 3-night stay courtesy of the NHS, I was told it was pancreatitis. I felt relieved it was not a heart attack. I thought, “Hand over the antibiotics and send me on my way!” I was itching to get home to the children. Little did I know it was the start of a long journey ahead.
Two months later in October, the pain started again. I put the kids to bed, rang my mum to watch them before calling 999 again. When there, I was met with a consultant that informed me I have chronic pancreatitis with necrosis (dead pancreatic tissue). Scans showed I had already lost 35% of my pancreas. I also had a pseudocyst, a pocket of fluid attached to my pancreas, that could either resolve itself or may need surgery.
Pancreatitis can happen to anyone, but in my case, I often wonder if stress was a factor.“
How did you do after the hospital stay?
“I was doing well, healthy changes in lifestyle, a lovely Christmas, mainly because I did not want another hospital stay. But in February the familiar panic set in that I needed to be seen by a medical professional again. I took myself to hospital.
The pseudocyst had grown, and had grown friends (more cysts) too! I was in so much pain I felt like clawing my own insides out. I ended up spending three weeks in hospital and they struggled to keep on top of my pain. The only thing that would slightly help was standing in a scolding hot hospital shower, IVs attached, until someone knocked on the door. I was a terrible patient. I was transferred to my nearest specialist hospital to have the cyst drained.
Waking up from the operation was instant relief. I thought to myself, ‘Is this my body?’ after spending three weeks in total agony. Eventually, I could go home to my children.”
How are you doing more recently?
“Since February, I’ve been waiting on an appointment to see a specialist. My doctor has a referral sorted for me, but it will be months until I see somebody.
In the meantime, the prescription pancreatic enzymes help me when it comes to eating food without as much pain. But I struggle most with fatigue and energy levels. After the kids are in bed, so am I. Everything else like housework, or fighting for my health, sometimes take a back-seat.
My mammy dearest as I call her (also known as Deb), and I have a wicked sense of humour which helps me. Laughter is the best medicine, and always at hand with the kids I live so fiercely for.
Now I have chronic pancreatitis, I am the most in-tune with my body as I’ve ever been. Conscious of things I put into my body and the effects it will have.”
Why are you sharing your story today?
“To let others know it does get better, and is even manageable with the right support. Pain can take its toll mentally as well as physically. I was 37 when I discovered my pancreas, and the ridiculous important job it has within your body. Personally, I would like there to be more education on the pancreas for the general public and for medical professionals before it is too late.
I was like a deer in headlights when first diagnosed, unable to absorb any information in hospital due to the medication I was on. Originally, I relied on doctor Google, but never do that! Conflicting reports that will drive you crazy. I have since learned to rely on peer support and charities like Guts UK, who know what you are going through and that everyone is different. If only I had that information in the early days. Hindsight, eh?
If I can just help one person by sharing my story, just one. To let them know you are not alone, I feel your pain then it is worthwhile.
My favourite saying: “Everything will be ok in the end, if it’s not ok, then it’s not the end” Things do get better, even if you can’t see it just yet. “
There is no effective treatment for pancreatitis. There is no cure.
Guts UK is dedicated to finding an effective treatment, a cure for this misunderstood and underfunded condition. We are building a community affected by pancreatitis, comforted in knowing they’re not alone.