'I was accused of having an eating disorder': Dancer whose crippling stomach pains were dismissed by doctors for YEARS is found to have a rare syndrome that nearly killed her and saw her weight drop to just 29kg
- For most part of her life, Jeanette Clabassi suffered constant stomach pains
- Despite her symptoms being dismissed, she was left fighting for her life
- She was a successful dancer, actress and model until her world crumbled in 2017
- She was diagnosed with abdominal cocoon syndrome after surgery
- The condition caused her intestines to twist into a 'butterfly cocoon' shape
For more almost four decades, Jeanette Clabassi suffered constant stomach pains.
Multiple doctors dismissed her crippling symptoms as food allergies and even an eating disorder over the years until the Melbourne-based dancer was rushed to hospital with a 'sore tummy' in November 2017.
The morning before Jeanette, 40, said she woke up feeling 'fine' but as the hours went by, her body started to deteriorate.
She underwent an emergency surgery before being diagnosed with abdominal cocoon syndrome - a rare condition that causes her intestines to twist into a 'butterfly cocoon' shape inside her stomach.
For most part of her life, Jeanette Clabassi (pictured left aged in her 30s) suffered constant stomach pains - and in November 2017, she was rushed to hospital for an emergency surgery (right) where she was finally diagnosed with abdominal cocoon syndrome
'All my life I was misdiagnosed,' Jeanette told Daily Mail Australia.
'No one could give me a reason for my stomach pains until I had surgery. My poor intestines had wrapped up, strangulated inside. No wonder I was going through what I was going through.'
Living with the excruciating pain for most of her life, Jeanette said every day was a constant battle.
'Every day was challenging for me. I was in some form of pain, it was getting to a point where I was severely drained, some days I would be in tears.
'I would go to the doctors and they would say the same thing over and over again, "your body is fine, there's nothing wrong with you".
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'No one was listening to me, I was alone. I tried desperately to live a normal life but I couldn't.'
For years, she underwent several colonoscopies, X-rays and tests but doctors struggled to figure out where the pain was coming from.
'I was also accused of having an eating disorder, pretty much my entire life. I was actually put into an eating disorder ward against my will, which in all honesty caused more damage to me,' she said.
'Doctors made a lot of mistakes, everything they were doing was a test. "We'll just try this" or "give this a go" - it was all I was hearing.
'It was hard when no one was listening to me. My heart would be shattered, what am I meant to do here, no one is listening here – does it take me to nearly die for people to realise?'
After being placed in a month-long coma due to surgery complications in 2017, Jeanette found out her family had been told she had 24 hours to live and to 'start planning a funeral'
'No one was listening to me, I was alone. I tried desperately to live a normal life but I couldn't,' she said (pictured in her 30s)
After being placed in a month-long coma due to surgery complications in 2017, Jeanette found out her family had been told she had 24 hours to live and to 'start planning a funeral'.
Much to their relief she miraculously woke up but she was in extreme pain and paralysed from all pf the surgery as her father recalled everything they'd been told.
'That was horrific because I just looked at my dad and tears started flowing down my face. It really freaked me out,' she said.
'I couldn't feel my body, I couldn't move side to side. I couldn't bear the pain, it was horrific, and my stomach still hurts... even to this day.'
She was fitted with an ileostomy bag attached to an opening outside her abdomen to help relieve inflammation in her digestive system.
'I wasn't allowed to eat solid foods for a couple of months. My bowels were extremely thin so anything I ate leaked out inside my body,' Jeanette said.
'Every hour, I was only allowed to suck on 20mL of liquid - either jelly or ice cream,' she said.
Within seven weeks, her weight dramatically plummeted to just 29 kilos.
'Every day, I felt like my body was eating itself,' she said.
Coming from a nutrition background, Jeanette started eating a teaspoon of coconut oil to keep her fluids up.
'I started sucking on a teaspoon of coconut oil every hour and after the first week, I gained seven kilos. I thought "my body is loving this, it doesn't have to eat my own body anymore",' she said.
'Every day, I felt like my body was eating itself,' she said
The actress, dancer and model led a very successful career until her world crumbled in 2017
'I've become anti-social, I lost my whole life, I lost a lot of business, I had goals and dreams, and they pretty much disappeared,' she said (pictured before her diagnosis)
After spending 10 months in hospital, she was finally allowed home - but she still has a long way to go to as the condition is incurable.
'I've become anti-social, I lost my whole life, I lost a lot of business, I had goals and dreams, and they pretty much disappeared,' she said.
'Everything's just touch and go at the moment. I get around on crutches, I haven't left the house since I came back home to my parents in July last year.
'I'm petrified. To be honest, I don't know what's going to happen next. It's going to take me a long time to rebuild my life again. I don't have much support.'
Since undergoing surgery, Jeanette said she has been struggling with the simple tasks, even eating has been challenging.
'When food goes into my stomach, it's not fine, it gives me certain reactions. I could be eating dinner but then feel sick five minutes later,' she said.
'My stomach is flat one minute, and then I'm bloated the next. It could take hours before it settles down again, I'd have to lie down or do exercises to alleviate the pain.
'Sometimes I feel embarrassed, I don't feel attractive like I used to. I had a six-pack once upon a time. I wanted to be pregnant but it's not going to be possible anymore. Maybe I'll adopt when my life gets back to normal.'
By sharing her story, Jeanette - who hopes to become an inspirational speaker - wanted other women to draw hope from her experience.
'Never give up,' she said.
'I must say I am very grateful to be alive.'
To follow Jeanette Clabassi's journey or make a donation, please visit her Facebook.
