Sue was experiencing severe abdominal pain and vomiting for years before being finally diagnosed with pancreatitis.
“Hi, I’m Sue and I’m 44 years old. Three important people in my life are my son, Brandon, my fiancé, Russ, and my best friend, Louise. I don’t know where I’d be without them. I love gardening; I find it relaxing. Watching something grow from nothing to the end result is rewarding. I’m also into crystals and positivity, I’ve started collecting crystals and have a nice collection going.
My problems began when I was 32. I had severe abdominal pain, and I was vomiting. I visited my GP several times who told me it was stomach acid and gave me over the counter medication. I had around fifteen return visits to my GP over the next three to four years. Each time I was sent away with a stronger painkiller. These sometimes helped. However, I was still vomiting, and the pain was still severe I don’t think the painkillers were in my system long enough for them to help.
I also had hospital admissions during this time, but I still didn’t know what was wrong with me. This was hard. At the time, Brandon was only five. His Dad and I had separated when he was three. When I was unwell and had to go to hospital, I used to worry about who would look after him. I felt guilty unsettling his homelife and sending him to go and stay with his Dad. I also tried to hide how unwell I was from Brandon. I’d put a brave face on. But talking to him now, he can still remember Mum having to go to hospital a lot.
I started losing a lot of weight and I was weak. I was unable to keep any food or drink down as I was constantly being sick. My friends and family were so concerned about me. I understood their concerns, but I wasn’t getting any help from anyone at this point.
Finally, I was referred to a gastroenterologist which got the ball rolling. I was given a diagnosis of recurring acute pancreatitis and was referred to the Hepato-Pancreato-Biliary (HPB) team. It was only then I felt I was finally receiving the help I needed, and I was relieved to be talking to someone who finally understood what I was going through. I was later told my pancreatitis had turned chronic.
Pancreatitis robs you of so much; social situations can be difficult due to dealing with the pain levels, and tiredness. I’m not able to do things I would normally do and have to listen to my body doing daily tasks.
The pain is debilitating during an acute attack and is worse than being in labour. I have never known pain like it, the only way I can describe it is like someone repeatedly poking a red-hot poker into your stomach and twisting it around, this can go on for hours or days. The battle I’ve had to get adequate pain relief at home is tough too. All I want is to be able to manage my condition at home but it’s such a battle to get the pain relief.
I was so grateful when I met my fiancé, Russ. He’s so understanding and supportive. He never complains and is always there for me. He understands I have my limits, and when I’m not well I have to rest.
I am now a Type 3C diabetic and take insulin four times a day, unfortunately hardly any of the medical professionals have heard of 3C. I was finally approved a CGM monitor this year which has helped to control my diabetes but my readings can still be erratic for no particular reason, I believe this is because Type 3C doesn’t seem to follow the same rules as Type 1 and Type 2.
It can feel isolating having Type 3C and chronic pancreatitis as there is such limited understanding by the diabetic teams and medical professionals. Knowing there is no cure can feel like a life sentence knowing you’re going to be battling this condition for the rest of your life.
Chronic pancreatitis is an invisible illness. I get up every day and do my hair and makeup. People see me and think I’m well; people can be judgemental without knowing your story. I do this to help me though, I think of it as putting on a brave face for the world and it helps me feel stronger mentally.
I try to live a normal life (whatever that is) and remain positive, but this can be challenging. I’m so lucky to have Brandon, Russ, and Louise in my life. I currently work part time and have an understanding employer who understands and supports my condition. I wanted to share my story to let others know they are not alone. Once you get referred to the HPB team you will start to receive the support you need.”
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.