My name is Jade Tallent-Saunders. I am 35 years old, married, and have two young children, aged four and two.

I started having biliary colic pain soon after my first child in 2021. After a few attacks of this, I ended up hospitalised with acute cholangitis, cholecystitis and gallstones. My gallbladder was removed once the infection had passed.

In recovery, soon after waking from the gallbladder removal, I awoke in the exact same pain as the gallbladder attacks, with acute vomiting the same as before. This was put down to normal post op pain. However, these attacks of acute pain lasting up to 6 hours, acute vomiting of bile and acute bile acid diarrhoea continued about once or twice a month until I worked out the triggers for these episodes (hormones, lack of sleep, stress, opioids, high-fat foods, spicy foods) and removed them from my lifestyle. From 2022-2024, these episodes were put down to post cholecystectomy syndrome by my GP.

In August 20241 contracted a viral infection which led to acute hepatitis, cholangitis and deranged LFTs. This completely changed the nature of my functional biliary disease (I didn’t have this diagnosis at this time). I was having attacks every other day with no known triggers. My attacks now lasted days rather than hours. My LFTs would go exceptionally high then start to come down between. I could not tolerate any food without setting off an attack. I lost 12 kg in less than 2 months. I struggled to even keep down liquids. This led to me needing to be NJ tube fed for malnutrition and fluid support. I spent 12 weeks in hospital trying to find the right combinations of medications to try and manage this condition at home and get a diagnosis of sphincter of oddi dysfunction.

During 2024-2025, I lost my job as a secondary school teacher due to ill health. My husband had to take 6 months off work to care for me. I could not be left alone with my own children (1 and 3 at the time), as an attack could hit at any time, and I could not look after myself safely, let alone my children. My husband had to change jobs because he couldn’t do shift work and take the children to child care each day. We nearly lost our house because I couldn’t work and had to rely on loans from our family. I rarely left the house that entire year. I could not function or meet my own basic needs.

Over 2024-2025, I spent over 150 days hospitalised with this condition. I had high LFTs and often threw up my feeding tube during attacks. I required admissions to manage my pain, sickness, bile acid diarrhoea, fluids, and to replace my feeding tube. I had 15 feeding tubes displaced in that year. Sometimes I had to wait up to a week to get a slot to get it replaced, with no nutrition and solely relying on IV glucose. Over this time, despite having feeding tube support, I lost a further 10 kg, now sending my BMI dangerously low. Not being able to tolerate any food orally for so long led to severe gastroparesis and global gastric dysmotility. Enteral feeding has left me with seriously low blood sugar episodes, which have also required hospitalisation. A liver biopsy also showed that having these relentless attacks for a year has led to sclerosis of my small and medium-sized bile ducts in my liver. This has left permanent issues with bile flow, causing acute pruritus and impaired liver function. This has required more medications to manage.

All of this was until Dr Menon agreed to take me on as a patient and trial Botox in March 2025. Two weeks after my first dose of Botox, I woke up one day and knew it had worked. I had daily pain as well as attacks, and my daily pain had gone. I had some pain over the span of that first dose, but it was nothing in comparison to before. I didn’t live in fear of an attack every day. Unfortunately, my gastroparesis had become so severe, due to going so long without tolerating food, that I could not return to eating a normal diet, but I was just grateful for no pain. The second dose of Botox at a higher dose gave me 4 full months completely pain-free! I felt a bit more like my old self again.

I am continuing with Botox until it becomes ineffective/doesn’t work anymore, at which time I will need a sphincterotomy. I have trialled every possible medication known to help SOD. Nothing has helped me except Botox. I sought out Dr Menon as I didn’t want the sphincterotomy just yet. I have Ehlers-Danlos Syndrome, which makes me scar badly. This will likely cause the sphincterotomy to scar over faster than the average person. I am in the highest risk group for pancreatitis post-ERCP, which I would like to avoid at all costs.