Sara and Maddy Bernard
This story is part of the Guts UK Pancreatitis Awareness Campaign.
Sara and Maddy’s Story
This’s story has two parts. The first part is from Sara, who has chronic pancreatitis, and the second part is from Sara’s daughter Maddy, who is 10 and also wanted to share her story in her own words. Please help us raise awareness of the huge impact that pancreatitis can have in families by sharing this story.
I think doctors are too quick to dismiss symptoms that point to digestive disorders as something like IBS. I believe I had my first episode of acute pancreatitis in 2004 when I was 27 but when I arrived at the hospital the nurses dismissed it as indigestion because I was heavily pregnant with my first child. I’d had no appetite all day and at about 7pm I went to the bathroom because I thought I was going to be sick. I waited there for about 20 minutes and then, as I moved, this pain hit me on the top left side, where the bra wire goes. I started being sick; it was green and then yellow. Suddenly I realised I needed to go to the toilet as well so my husband brought me a bowl and it was coming out of both ends. We assumed I had a stomach bug but the pain was getting worse and worse so my husband phoned the midwife who advised ringing 999. The ambulance arrived shortly and the Paramedics took it all very seriously and took me to hospital. In hospital the abdominal pain was put down to a grumbling appendix and the bowel control problems were put down as IBS. No one took a blood test and the nurses turned me away even though I was bringing up what I now know to be bile. They said in a very patronising manner that it was indigestion and told me off for wasting the Paramedics’ time. They just gave me a sick bowl, told me to buy some Gaviscon and sent me home!
It was in 2013 when I had my first documented attack and because I had had a few drinks over Christmas the Consultant went with the diagnosis of alcoholic pancreatitis. No one asked about my past medical history and clearly no one read my notes. I have argued and argued this diagnosis for years, until finally I paid for an appointment with a surgeon who wrote a very strongly worded letter to my consultant to say I had obviously had the condition for many years and that he believed a gallstone ripped through my main pancreatic duct causing the duct to collapse. I had five ERCPs to open both the main pancreatic duct and the common bile duct. Each stents was placed for four weeks to stretch the duct open. It did help while the stents were in place but as soon as the large stent was removed I rapidly declined again. None of this was caused by alcohol as far as my surgeon was concerned: he believes it was gallstones, which I wasn’t aware, are very common in pregnancy! In light of this and other stories I have heard I just wish doctors ran more tests before jumping to conclusions. It would have saved my family and me a lot of heartache.
I now have virtually no life. I am frequently bedbound from pain and nausea. If I have a good day and venture out of the house you can guarantee I will have three bad days to follow. My second daughter, Maddy, has never been abroad because I am terrified of having an attack of acute on chronic pancreatitis whilst in a foreign country. It is hard enough to explain the pain and what treatment I need in English, let alone in a foreign language. My good days would be someone else’s bad day, I am still in constant pain, lacking in energy, unable to eat and terrified of needing the toilet but I somehow push through. The medications help but often zap me of the little energy I have left. I used to clean my home daily from top to bottom now, if I am lucky I can pop a load of laundry in the machine! I can’t carry it though. Sometimes the pain is so sudden it makes me fall to my knees. Then, I can’t get back up again! The gnawing pain never goes away, it just changes in intensity. The stabbing pain takes me by surprise and knocks me off my feet. The band of pain across my upper abdomen is constant too. I’ve been told my only option is a total pancreatectomy (surgical removal of all or part of the pancreas) but this brings its own problems. My digestive system will struggle meaning more toilet stops; my diabetes (caused by the rapid decline of my pancreas) will worsen, so it doesn’t feel like a choice. The stents I had gave me my life back for a few months but when they took them out I rapidly declined again, which felt like a cruel joke, so now my only option is surgery and that is daunting! The operations to insert the stents (via ERCP) were painful enough, especially as the doctor forgot to prescribe pain relief on the ward, so my fear of surgery is at fever pitch. I have considered Dignitas to end my life, end the pain, and end the torment on my family but I also refuse to be beaten by this disease.
I am scared of going ahead with surgery but I am even more scared I will die in my bed having wasted years of my life there. I just want to be a good wife and mother; instead I am ‘just the patient’. My husband does anything I ask of him so I am lucky to have his support but the knock on effect of my chronic pancreatitis is that it is stealing time and memories we could be making from my devoted husband and daughter! Maddy is the most amazing carer. She understands diabetes and the function of the pancreas so well that she not only corrected her teacher on a biology lesson but she also took over the class!! The teacher told us he knew more about the digestive system from Madeline than he’d been given in his curriculum notes. Also I think we need to get more information out there about the support available to young carers. I found the Young Carers Association through the school and they’ve been amazing with Maddy with days out and counselling. I’ve met so many mums that are worried sick about being a bad mum yet they don’t know the young carers support is out there!
Every single day is a struggle in one way or another. My mental health is at an all time low but if telling my story helps someone else then I am happy to share it. I now work as an administrator on a Facebook group for pancreatitis suffers, which is very rewarding. This summer I had the opportunity of meeting a few people from that group. It was amazing to sit and chat to others who knew how I felt. Two of them stayed with me for a holiday, as I live so close to the coast, and if I or they were having a bad day we immediately understood each other and knew what we needed (medication, distraction, heat pads and hot water bottles). It was a wonderful summer. I find working on the Facebook support group extremely rewarding and I enjoy helping others. I’ve made some life-long friends. I have also become more compassionate and patient. I feel that I have become a better person through having a chronic illness.
Hi, my name is Madeline Bernard and I am 10 years old. This is the story of my mum and her chronic pancreatitis. My mum has been suffering for 6 years although her surgeon has said it may have been a lot longer. I was only 4 when she had her first attack of acute pancreatitis that I remember. I don’t remember much about this though because I was so young, and sadly I don’t remember her healthy self much now; this makes me upset. The most important thing for me has been trying to help my dad care for her. The challenges to looking after my mum are getting her medication down for her from our high cupboard when she is too ill to get out of bed, helping do her blood sugar, giving her insulin and taking her blood pressure. It is very scary when I see her in pain or having yet another attack. Also she has very bad hypos because of her other illness, diabetes, which I don’t think she had before chronic pancreatitis. I help my mum keep an eye on her blood sugar and know exactly what types of sugar she needs. I also help her get to and from the bathroom when she is in really bad pain. It is also very upsetting and scary to see or hear her being sick. Sometimes we can’t do things because mum is always in pain or suffering. She goes into hospital a lot which makes me very scared as she is always in for ages. There is a Young Carers Association that mum found out about through school and they really help me. When I’m nervous they calm me down and they are really kind. They see me at school or they visit me at home, we go to parks and on days out so I can gather my thoughts. We use activity sheets to help us open up and get all of our emotions on a page so we can let it out. It is not easy to explain to friends or teachers at school because they don’t understand what it is like, which is why young carers are so helpful. I really wish I could run around with mum in the park and do a lot more together but that doesn’t happen anymore, that’s what we used to do and I really enjoyed it but I can’t because she can’t run or even walk much now. Dad tries to have fun with me but every time we do he says we can’t be too long because he needs to make sure mum is ok. I hate pancreatitis but I don’t hate mummy, she can’t help it. She is a fighter though and won’t let it beat her. I love her so much and I want her to know that. I miss my old mummy and I want her back. My hopes are that her operation goes well and we can say good bye to medicine, well most of it.
Support for young carers
If you have children who are young carers they might have access to help and support. This could be counselling and/or taking the children on days out or to see a show. The best way to access support for young carers is to get a referral from the child’s school or to contact your Local Authority. There are also a number of different organisations that might advice in how to obtain help:
What can you do?
Fancy fundraising for Guts UK? Have a coffee morning or dinner party with our pancreatitis quiz for the Kranky Panky Weekend. Or maybe you take our quiz and ‘Pin the Pancreas on the Person’ game into work with a collection tin? Your donations will make our research into pancreatitis happen. Thank you.