Friday, March 1, 2024

Invisible Illnesses: “It Took 15 Years Of Suffering From Extreme Pain Before I Was Diagnosed With Crohn’s”

We’re putting the spotlight on Invisible Illnesses in this new series. Are you one of the many Kiwi women who suffers in silence? 

After we spoke to endometriosis sufferer, Sophie Sager during Invisible Illnesses Awareness Week in October, we kicked off our new series, last speaking to Dr Libby about just why so many women are suffering from Invisible Illnesses, particularly Autoimmune Diseases. A staggering 80% of all those suffering from Autoimmune Diseases are female. And, they often take a bloody long time to be diagnosed, leaving women to wonder if it’s all in their heads and they’re actually going crazy before, finally, a diagnosis is made (if they keep searching for answers!).

It’s frustratingly common, so in this series we’re talking to Kiwi women about their health battles with Invisible Illnesses, their journeys to being diagnosed and what’s given them relief along the way. Our hope is that by sharing these stories, they may help spread awareness of these illnesses to other women, giving some tools to help, inspiration to those who can sense something isn’t quite right with their health to continue to search for answers and ideally, get diagnosed sooner! If you’d like to contribute your story, please drop a line to [email protected].

This week, we talk to Anita, who is true inspiration, having battled a myriad of different illnesses, which she refuses to let get the better of her.

Since she was 15 years old, Anita Jones has been at war with an invisible enemy. It’s a cunning enemy, who has waged its war stealthily – often baffling the nurses and doctors who repeatedly try to stitch her and fix her confusing ailments.

Over the years she has now been diagnosed with Polycystic Ovaries, Idiopathic Thrombocytopenic Pupura (ITP), Systemic Lupus Erythematosus (SLE), IBS, Colitis, Septal Lobular Panniculitis, Oesophageal Motility Disorder as well as Crohn’s.

But it was that Crohn’s diagnosis that was the longest one coming and the one that was hardest fought for, after wreaking havoc on her body for 15 years and baffling countless doctors before it was finally detected.

It’s a moment Anita remembers well – meeting with gastroenterologist Steven Ding, who within 15 minutes of her consultation gave her the diagnosis.

“Nobody wants to have anything wrong with them, but that sense of relief you feel is huge,” she says. “You feel like you’re whinging, like it’s not as bad as you think and you start to doubt yourself and what other people might think.”

“Then, you get diagnosed and think, ‘thank goodness that the test has shown something!’ – not that is a justification, but it’s that you feel like you’re going crazy when you go to all these doctors and specialists. For 15 years I wasn’t diagnosed – that’s a really long time for it to take root and not be treated.”

Anita is just so glad she didn’t give up – and that’s the message she’d give to other women who might be experiencing poor health, particularly anything that often gets passed off as “girly issues”. “If you’re having issues, don’t take no for an answer,” she says. “If you genuinely believe that there is something wrong, the right doctor will find it – you just have to get a doctor that believes you.”

Anita undergoing an Esophageal Dysmotility test where a tube was fed into her stomach.

Despite her long list of ailments (and a longer list of hospitalisations and surgeries – including two restructured knees, a hysterectomy, and the removal of her ovaries this year), Anita is one tough cookie, who continues to push forward and refusing to give up, no matter what gets thrown at her.

Her problems started when she was just 15 years old and was a super active, athletic teenager. “I was Sporty Spice on steroids – minus the steroids back then!” she laughs. She was diagnosed with polycystic ovaries, but soon, her abdominal pain ramped right up. “I had what I would call contractions – they’d come on acutely and last anywhere from 30 seconds to 30 minutes – sometimes even 3 or 4 hours,” she tells. Her worried mother took her to hospital, but despite seeing a specialist and going for a multitude of scans and tests, they couldn’t get to the bottom of it.

For the next two years she continued to have acute pain (whilst still somehow managing to keep up with her sports!), until one morning she woke up to even stranger symptoms. She noticed she had hundreds of pinprick bruises all over her arms and legs. Thankfully, she called the doctor who saw her immediately and sent her straight to Medlabs, who ran a test where, basically, a little nick was made on her arm and they then waited for her blood to clot. When, more than 12 minutes later, it still hadn’t clotted (it should have been clotted by about six) they stopped the test and sprung into action mode – organising for high dose steroids and bone marrow testing. Her doctor called her parents and explained that the results suggested she either “had leukaemia, or a one in a million disease called Idiopathic Thrombocytopenic Pupura”.

It turned out to be the latter – the very rare Autoimmune Disease, ITP. “Basically, your blood platelets are born in your spleen and ITP is where your immune system attacks the platelets in your spleen,” she explains. “An average human has a platelet count of 150-400, if it’s below 50 you’re deemed critical and can’t be operated on. At the time I was diagnosed the lowest count in human history was five and they died of a brain haemorrhage in their sleep. My count came back at eight.”

Anita and her parents were told that if she hadn’t gone to the doctor that day, she’d more than likely be dead. She was given four treatment options – none of which sounded all too appealing to an active 17-year-old: have a blood transfusion every three weeks for the rest of her life, take a very high steroid dose for life (which would likely cause premature death around 40), have her spleen out, or do nothing and die. She opted to have her spleen out. But the war kept on waging – shortly afterwards she was also diagnosed with Lupus.

Then, it was when she had her first child that she had that terrible abdominal pain again – her inflammation levels were off the chart, but doctors couldn’t find a cause, and her baby was healthy. So she got pregnant a second time – and this time had a full on attack when she was induced, leading to her needing an emergency C-section under general anaesthetic. The finger was pointed at her polycystic ovaries as the cause, so it was decided she’d have a hysterectomy when she was just 30.

“But then two months later, the pain came back,” she says.

Her life was in tatters.

“My parents had to come to my home and look after my two pre-schoolers. They did all the bathing of them, cleaning, cooking – I couldn’t. I was doing it solo and doing it rough physically.  It was mentally and emotionally draining.  I was on large doses of steroids which kept increasing weight.  I was in a no win situation.”

That’s when her specialist reviewed all her notes and decided to send her to the best of the best gastroenterologists, Steven Ding, who gave her the diagnosis that changed her life. “I was bed ridden until I met Steven,” she tells. “Now they knew what it was, they couldn’t cure it – like most autoimmune illnesses – but you can at least move forward and get on with what you can get on with!”

Six months after surgery, Anita was finally able to eat solid food again. Here she is out – in the sunshine no less! – finally enjoying a meal out.

Anita did see improvements – although four years ago she kept getting sick, so had another surgery, a Nissan Fundoplication (“which basically means they went in through the C section line I already had and twisted my stomach 180 degrees and then meshed it so that there was a twist in the top of the stomach so acid couldn’t get back out of stomach”). It didn’t work, twice, and then she found herself in hospital again this year due to Crohn’s, which left her unable to eat for four months and required surgery for a hernia – it was her 23rd surgery in just two and a half years.

But, amongst the pain and frustration there has been a lot of joy. When she got out of hospital, her partner proposed and they chose a date just six weeks ahead – May 1 – to tie the knot. Her partner has been her rock – picking up the housework and running their household to take the burden off her shoulders. She had a goal in mind for the wedding. “I was determined that I was going to look the best I could,” she tells, so she got back onto a program that she knew helped her physically and mentally, AIA Vitality by AIA Insurance.

“Basically, it’s a wellbeing program that you can get if you’re with AIA Insurance,” she tells. It’s a science-backed programme that helps you to make healthier decisions and motivates you along the way with vouchers and discounts. “You can get things like discounted spa vouchers if you reach the targets, which I’ve made good use of!” she says. “You track things like your steps, and it feels like that little thing on your shoulder saying, ‘You can do it! You’re only 1,000 steps away from reaching your target today!’ It’d make me get up and walk on the spot while I’m watching TV to get there – the kids would think I’d gone mad.”

Anita on her wedding day!

But Anita blitzed the programme – felt great for her wedding, and in the eight months since has lost 21kg.

Invisible illnesses, particularly the number that Anita has, can be debilitating, but she refuses to give up. “You do what you can,” she says. “It’s not that you need to go climb Mt Everest, but the thing is, most people have some sort of barrier in their life, but if you can push it as close to that limit as possible, that feeling of achievement is amazing. And it’s always a good distraction from the pain.”

While she was undergoing 20 plus surgeries, Anita pushed her own barrier by doing her Level 5 in Financial Management and Insurance and was offered work by a financial/mortgage advisor Anthea Livingstone (“she’s amazing – she never grumbles when I have to tell her I’m too sick to make a meeting. She’ll even send me hot coffee instead!” says Anita). The feeling of that achievement, of doing those studies and holding down a job was akin to her own version of climbing Mt Everest.

“I could just sit on the couch and give up and go, ‘I’ve got too much wrong with me,’” says Anita. “But I saw an opportunity, and I thought, ‘I’m going to do this.’ I’ll never give up.”

Do you have an Invisible Illnesses story to share? Email us at [email protected]

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