Olivia’s Broken Stomach

22/03/2026

This is short update to say that I am looking around at my life and am just in utter awe at far I’ve come even in the last 8 months.

Getting my surgical GJ being switched onto a much better type of fluids and nutrition and having my hypos properly managed has truly changed my reality. Not spending hours upon hours having to vomit bile or a drink that I want to enjoy, getting to taste food and enjoy it knowing I will have only bloating, nausea and much less pain because I don’t have to vomit it most of the time has changed everything. Not to say I am not still very sick but I am living at least 60% more than I was this time last year.

I like to think that my life right now is so much sweeter and full of so so many more blessings than I could have imagined because of what life used to be like. Simply getting to be a law student and go to all my classes, to go and see penguins with new friends, help with long red frogs nights, watch the stars laying under a bonfire, share the gospel on campus & I’m playing hockey in the goal again this year.

These things aren’t easy nor do they come without a huge cost don’t get me wrong but the fact I get to even consider doing them has me in tears writing this. Ohh how beautiful this life can be even when things aren’t perfect or easy. So here’s to the start of this year ! Despite some residual pneumonia (featuring some huge gowns), a couple pretty broken toes and upcoming surgeries + consults I feel like I’m living a completely different life to what I could have vaguely ever imagined this time even 6 months ago!

(Medical update coming in a couple weeks when I’ve got a little more info ❤️)

22/02/2026

07/10/2025

2 years ago last Monday I had my life saving surgery in Germany. This was the start of my life 2.0. There was no way we were to get to Germany without the help of so so many people.
I was reflecting on this all and just had a few too many emotions and a little bit of trauma from it all to actually post until now. Honestly to look back doesn’t really ever get much easier - it was both the best medical experience of my life and equally the hardest. I haven’t known my body to be the same ever since, both in the best ways but also in some of the worst. Since that time I have lived truly truly lived. I have been fuelled by my feeding tubes and my central lines but I have lived. Before Germany I was dying despite the use of these IV fluids, feeding tubes and every other effort. Left at the hands of a medical system which I had to walk back into once I got home that still hold me now is my ongoing struggle, one that has continued to prolong the suffering of this with many rare diseases or those who are complex.
2 years ago I was about 7 days post op and suffering from severe septic shock, I had just been put back under had my line removed and replaced, lung fluids drained and other measures taken to keep me alive a second time. Today I attended a law lecture in person and will watch the others online, I will tutor a high schooler and I will go to bible study tonight. This is not to say I will not have like 3 naps/rests or not be suffering or in pain. But how lucky am I to have a body that can despite all the pain, symptoms and medical devices that can go to be part of this world. So I am doing it sick, sore, when it is hard, on good days and bad days.

I think back and couldn’t believe that while I was fearing I would die from sepsis after surviving surgery and the lead up I would be sitting here in a lecture near the end of my first year at university and living beyond my wildest dreams. Held ultimately by the grace of my God in every season and trial before Germany, during Germany and all to come still.

28/05/2025

It’s been a whole year since my Hickman line was placed. And there has been a wave of emotion and thoughts surrounding this. On the 18th March 2024 I had my picc line placed in my arm for hydration and medications and then on the 23rd May I had that replaced for a Hickman line in my chest. This double lumen line in my chest is a tube that goes down into my heart through my jugular vein delivering medication and fluids directly into my bloodstream bypassing my gastrointestinal system all together.

This line in my chest changed everything.
It flows with more than just fluids and meds—it carries my ability to live.
Because of it, I’ve walked back into classrooms, sat exams with clarity, sung songs at camps, tutored many high school students, climbed upmany places in the name of adventure and laughed with friends. I’ve travelled, I’ve lived—in ways I thought I’d never see again. I like to think I got 1/3 back from Germany, 1/3 back for my central line and 1/3 is still to come with my GJ tube.

But it’s also been heavy.
The routines, the sterile rituals, the beeping alarms.
The blood that wouldn’t stop in those many many months.
The hospital visits—so many—for sepsis scares, for bleeding, for just-in-case.
I’ve learned to tape and wrap and cover just to take a shower.
To endure skin that flares, bleeds, burns and stings.
To drive while feeling every tug, every rub.
It’s constant. It’s exhausting. It’s not invisible.

And yet—I’d choose it again.

Because before this line, my world stopped at my front door.
Now, I have glimpses of the life I’d only dreamed of ever getting back.
And even on the hard days, I carry it not just as a burden, but as a lifeline.

It didn’t just give me hydration—it gave me back pieces of myself that I had accepted were gone.

But more than all of this—it’s God who holds me.�His promises of goodness and grace have never let go.�Even when I’m overwhelmed, He is constant.�He finishes what He starts, and I know—He’s not done with me yet. This journey, with all its pain and beauty, is being woven into something bigger than I cant see yet.
And in every step, He is faithful. Despite me not seeing it I KNOW he will complete his work in me.

28/01/2025

It is SMAS Superior Mesenteric Artery Syndrome awareness day. SMAS was one of the compressions which nearly took my life in 2023. This condition is a rare disease which many struggle to get diagnosed with around the world. The inability for food to get through my intestines due to this compression combined with the other compressions and co-morbidities left me travelling to the other side of the world to save my life. I was dying from malnutrition and dehydration and I will forever be in debt to Prof Sandmann and Dr Scholabach for their care, kindness and treatment & in awe of the power of my God.

SMAS here in NZ is not treated well, diagnosed easily or given the treatment that it needs. Unfortunately this disease does kill and has killed around the world.

Even though this disease only affects 0.013-0.3% of the population I am not too rare care 💜

20/01/2025

Belated new year post !

2024 was a year of new beginnings for me.

I feel as though that I need to once again pay gratitude and praise to Germany, to Sandmann for saving my life. Because I WAS DYING & I WOULD HAVE DIED had I not had surgery, my vascular compressions + malnutrition had my on the brink of death.
So while there are many avenues developing for the treatment of vascular compressions for those us who were in search of our last ditch hope of survival Germany brought us to where we are now. Despite the every day battle of living with such hard comorbidity conditions I know that every day, every breath and every moment is a gift from you all & my surgery that I will never know how to ever say thank you for.

This year has been one of high highs and low lows. So I’m not here to say that this has been an easy or triumphant year alone rather a hard fought battle, only by the grace of God have I walked each day.
A combination of incredible opportunities like the Bussines Hall of Fame, SADD national leader & board rep appointments, academic excellence & blues for music, debating + academia, like stock pitching nationals, jazz band awards and Sunday morning worship have filled my year. Amongst so many more incredible highs I have also been acutely aware of having to be reliant on feeding tubes and central lines, many many appointments and road bumps. Between blood infections, clots, pneumonia, raw skin reactions & so many other things.

May this serve as a reminder that life is precious and every single day is deserving of praise & a privilege rather than being guaranteed or a right.
Once again I owe my life to you all, thank you for fighting to give me life 2.0. I truly am one of the luckiest people to have been given yet another year of walking along so many different paths carried by God alone 🙌🏻

10/10/2024

It has just ticked over 1 year since surgery on Sunday. It doesn’t feel real that it has been 12 whole months.

My life looks completely different, I can walk and do life, I go to school, play music. I run Christian group at school, volunteer, play worship & kids church. I recently went to Auckland coaching the readers cup girls, coach and compete in debating. I have also been a SADD national leader !

I celebrated my 18th, was 2nd nationally for stock pitching and was the best speaker, I was 2nd nationally for a university science quiz, was awarded a speaker award in Dunedin schools debating and placed 3rd with a speaking award for a debating tournament and just got a huge uni scholarship 🥳

Most of all I was chosen to fly to Auckland to give a speech as the class of 24 YES ambassador at the New Zealand Business Hall to Fame which resulted in being invited to meetings all over the country including meetings with Tend Healthcare, Sir Ian Taylor and many other opportunities. This was truly the definition of immeasurably more than I could have ever imagined. (THANK YOU !)

I firmly believe I would be dead right now if a year ago I had not been privileged enough to have had surgery in Germany. I will forever be grateful for the support, continual prayer and community that got me there.

While all of this is amazing my life is by no means easy. I still battle with severe gastropareis symptoms & EDS + POTS (&co) but my Hickman line has changed my life with hydration and anti nausea. The fight for acknowledgement, fair treatment or any type of feeding adjustment to make my quality of life better is still hard.

This year has brought so much good but it has also come with pneumonia, many infections and blood infection - almost sepsis scares. It has come with picc lines, Hickman line, bleeding, 10+ picc clots, a huge blood clot in my arm and blood clots in my lungs. It has come with prolortherapy, 2x weekly physio, a cracked collarbone and many days spent in bed BUT my life is 100% better than it was a year ago.

Here’s to 2025, my double degree in law and health science and all glory to God for the last 12 months!

(More updates to come)

21/07/2024

Update I posted on Insta about a week or so ago sorry for the delay!

So it’s been a minute since I posted an update and I’m so so sorry for that.

I’ve been wanting to wait until things had resolved or I had some answers before I posted but I’ve decided that I am going to give an update regardless. I’ve tried to say nothing because there has been nothing good to say at times things have been pretty hard!

I had a Hickman placed over 1.5 months ago and that was to be a better option as my PICC was failing, placement of the Hickman was semi brutal but all in all okay! A week after placement it began to bleed A LOT and is still bleseding which means dressings are coming off, it’s bleeding through onto things, I’ve got huge infection risk etc etc.

I have had to head into ED or to the IV team and even Peads helped me with one on a weekend, it’s been super frustrating not being able to get it changed once a week and be done.

This has happened because the cuff under skin isn’t being grown into by my skin, once the stitches come out that would mean my line would “fall” out. I’ve learnt how to do my own dressings and can do it all now which has been life changing.

Not a lot has been happening progress wise, I’m still struggling with my kings and pneumonia, keeping my kidneys alive with constant IV fluids and am beyond lucky to have access to IV anti nausea which is helping me to keep enough feed down to maintain my weight currently.

We are playing a waiting game with public specialists from all over the country and private ones too and honestly just a rubbish time of being passed around and just let down over and over and over.

I’ve just had the high cost treatment pool procedures being reviewed by parliament using my case & there are a lot of things in the works to attempt to change things for people.

Much love, more updates to come 🫶🏻

09/05/2024

Sooo as some of you will know I was booked for a Hickman line placement yesterday which was going to be amazing timing considering my PICC had blocked again & that my skin was covered in hives from the dressings.

After doing pre op bloods and assessments I was called the night before and told that I was not medically stable enough to have the procedure & general anaesthetic. That meant that instead of surgery yesterday I went in for a further conversations, to get my PICC unblocked + re dressed and just generally figure out what next.

So my PICC is unblocked but I need to head in today as well to get the best possible plan and advice about my skin. My Hickman has been rebooked for 2 weeks away, and we will be monitoring bloods, my chest and the other things that stopped me being able to have it done today.

It’s pretty gutting when you are literally doing everything right and everything in your control to keep yourself well & to be prepared for necessary procedures but your body just won’t play ball. It really makes you just want to cry because no matter how hard I try at the moment I can’t seem to get my body stable enough to have the procedures that will be life changing and beneficial to my quality of life.

28/04/2024

Middlemore hospital is not where I thought I would find myself after travelling to Auckland for an appointment with Fraser Burling among other things.

My appointment with Fraser went well, had 2 more prolortherapy injections and we discussed some next steps and treatments for some other issues related to my EDS.

I landed myself in hospitals and was diagnosed with a small bleed in my stomach, it has either come from a tear from my tube or another cause, we aren’t 100% sure but will continue to monitor this and am getting follow up once home.

We are still worried as I’m still incredibly sick and despite multiple rounds and types of antibiotics have still got huge infection showing in my blood and urine. The type of bacteria in my urine is particularly unusual and leads us to need to quickly investigate other causes, such as endocarditis or other source of infections. Depending what my blood cultures grow or don’t grow a plan will be made to treat things inpatient or outpatient.

Thanks for all the love and support, I’m doing well all things considered and making the most of the good moments whilst taking the bad as they come (which they keep on coming atm ahha )

Update since this was posted:

- the initial bloods that are back not the culture, have shown that I am anaemic (which makes sense), have still got high infection markers and that my blood is clotting too much even though I’m on blood thinners, and a couple other things that we are unsure about yet. Waiting for next steps and for cultures to grow which will give us more information.