Amee’s story
"I was in and out of consciousness and was constantly vomiting. Blood tests revealed pancreatitis."
Tell us a little bit about yourself
“My name is Amee, I’m 35 and I’m from Milton Keynes. I live with my husband, our 16-month-old son, Olly, and our dog, Belle.
Belle is a therapy dog, so we visit local primary schools and hospitals together. People are always so happy to see her.“
When did your symptoms begin?
“I was first admitted to hospital in February 2023. I’d lost three and half stone in weight and then I got gallstones.
My gallbladder removal surgery was booked but I was undergoing fertility treatment at the same time and fell pregnant with my son. The focus moved from gallbladder removal to managing my flare-ups instead. I was unwell throughout my pregnancy with vomiting and pain but I assumed it was down to my gallbladder.
The pain got too much so I went into maternity triage (a ward in hospital where they assess pregnant patients who become unwell). They thought it was pregnancy-related and sent me home with prescribed pain relief and anti-sickness medication.“
What happened after you left the hospital?
“For the next two days, I was horrendously ill. I should have gone back but I didn’t. I thought I was overreacting, but the pain became so bad. I was vomiting green bile.
I got myself into the bath to try and cool down and help with the pain. I could barely walk. My husband came home to find me passed out in the bath and called an ambulance. I was rushed to A&E. As I was 27 weeks pregnant with abdominal pain, they took me straight to the labour ward.”
How were you diagnosed with pancreatitis?
“I was in and out of consciousness and was constantly vomiting. Blood tests revealed pancreatitis. Because I was with Belle (my assistance dog), they created an intensive care room on the labour ward for me.
Things were touch and go. My family were called in and were told it might not be a good outcome. Blood tests showed that my amylase levels were severely raised (this indicates the presence of pancreatitis) and I had sepsis (a life-threatening reaction to an infection). Thankfully, medical staff managed to effectively begin treating me.”
What did scans show?
“About a week later, I had a Magnetic Resonance Cholangiopancreatography (MRCP). This is a type of scan that looks closely at the bile ducts. I also had an ultrasound (a procedure that uses sound waves to create an image of a part of inside the body) which revealed a gallstone blocking a duct which caused my pancreatitis.
It was too much of a risk to my pregnancy to have the gallstone removed. I was prescribed morphine into a vein (intravenous) and antibiotics to fight the infection.”
How was your pancreatitis for the rest of your pregnancy?
“I spent a lot of time in hospital during my pregnancy. We discussed delivering the baby early but decided against it as it was such a precious pregnancy. The remaining weeks of my pregnancy were managed, although I was still in a lot of pain. At 37 weeks, Olly was delivered by c-section.
I was still very ill and spent the next three weeks in hospital. Three weeks after Olly was born, I had emergency surgery to remove my gallbladder. Since then, I’ve developed Bile Acid Diarrhoea (BAD) and now take prescribed medication for pain relief and to bind bile acid.“
How has your experience impacted you emotionally?
“My focus throughout has been to stay alive and keep the baby safe. The last 12 years have been tough, going through fertility treatment to get pregnant, with losses in between. I became pregnant with Olly on our last round of IVF (in vitro fertilisation). My husband and family thought they had lost me and the baby at one point, but thanks to the amazing staff at hospital, we got through it. Belle, my assistance dog, was with me the whole time. I’m autistic, which is why I have her, and she helps me a lot as I get anxious in some situations.”
How are you now?
“I developed Post Traumatic Stress Disorder (PTSD) from my experiences, but counselling has helped me to process and understand what happened. I feel I am getting there. I feel like I’m starting to get my life back.“
What are your hopes for the future?
“I want to get on top of my medication and feel better, so I can do normal things again. When I think about what I went through, I get upset, but I want to be able to come to terms with it. I would like to be able to think and talk about it without the overwhelming feeling of dread.“
Why are you sharing your story?
“I don’t want others to feel scared. It was a horrible situation but there is hope. I got through it and there is support and treatment out there for pancreatitis. The doctors and nurses were amazing. They saved my life and now, I want to give back. If talking about what I went through helps one person, then I’ve done a good job.
I only found out about Guts UK charity when trying to find information about gallstones, pancreatitis and bile acid diarrhoea (BAD). It was the only information I got that wasn’t worrying. It was friendly and informative.”
How can YOU help to create a brighter future for those like Amee?
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.
Our guts have been underfunded and misunderstood for too long. Together, we can change that. Donate to our life-saving research today. Thank you.
