For decades Becky was told her problems were down to reflux. This wasn't questioned until 2018 when she was finally diagnosed with chronic pancreatitis.
“My name is Becky. Last year after living in Canada for seven years with my husband and three daughters, I moved back to Scotland. I’ve always been creative, studying at art school and before I had my kids, I was a fashion designer. Now I’m a picture framer and I teach sewing classes.
I can’t pinpoint my first symptom. For over 20 years, I suffered from intermittent pain and nausea. I was diagnosed with reflux. Nobody ever questioned the diagnosis either, including myself. I’ve since been told GPs wouldn’t have considered a 25-year-old to be suffering from pancreatitis in the 1990s.
One morning in 2017 I had my usual coffee and peanut butter on toast but within minutes I was in severe pain and throwing up. There was also blood in my vomit and being concerned I went to ER. They didn’t question the reflux diagnosis, just sent me home saying everything would be fine and I did get better. I would get these attacks from time to time, they lasted around five days. Sometimes it would be years in between an attack and sometimes a matter of weeks.
In 2018 I had a series of attacks that lasted longer than normal. This time the doctor agreed enough was enough. He decided that my reflux diagnosis should be investigated further. Following an ultrasound showing pancreatic cysts I was then diagnosed with chronic pancreatitis. Even after this diagnosis I was in and out of hospital a couple of times and lost weight.
I knew a bit about the pancreas as my Granny was diabetic before insulin was available. However, I hadn’t heard of pancreatitis. I had always felt the reflux symptoms sort of fit me but not quite. The first time I read the symptoms for chronic pancreatitis I realised they matched perfectly.
Once diagnosed I stuck to a low-fat diet and cut out alcohol. I take Creon and now I have better understanding of pancreatitis, I’ve been a lot better and I’m extremely lucky to not be in daily pain. I remember a nurse saying to me “this isn’t going away, no matter what you do you may have another attack”. But here I am in 2022 and since Spring 2019 I haven’t been back into hospital. In Canada, I had yearly check-ups. When I came back to Scotland, trying to get back into a very stretched NHS service was frustrating and it took a year to get an appointment after I paid privately for an MRI.
Just because I’m pain free doesn’t mean I don’t think about it, and it doesn’t affect my daily life. I feel anxious going to social events as they are filled with alcohol and food. I’m always the designated driver as it makes me feel useful. Sometimes it can be overwhelming. I get upset looking at menus knowing I either won’t be able to have anything, or the restaurant has to make adjustments. I’d love to be able to go to a restaurant and not have to explain my illness to the staff. I was recently invited to a Christmas party too. It feels like another group of people I need to explain my illness too. All I really want is to be able to go and it be about the people there and spending time together, not my pancreatitis.
I still don’t know the reason for my pancreatitis. Genetic testing has been mentioned. As I sit writing my story in a coffee shop with my decaf Americano and skimmed milk, it’s a treat the way a glass of wine used to be, I think about how lucky am I. Whilst I miss cheese, burgers, wine and being able to order off a menu without a second thought. I’m still here and I have a loving family.
I was drawn to Kranky Panky, as I’m keen to bring a bit of hope to anybody reading my story. I want to keep pushing for awareness in the hopes for more research. Anything I can do to make someone else’s diagnosis quicker and life with pancreatitis better is my goal.“
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.