The story behind The Ostomy Studio
This is my story and why I set up The Ostomy Studio. Thank you for taking the time to read it.
I’m Sarah. I’m a mum of 2 boys (technically men I suppose) Eddie 21 and Charlie 19. I’ve been married to John for 24 years and we live in East Sussex. We have 2 black Labradors – Tess and Tara and we love running, hiking, being outdoors and mountains.
I’m a clinical exercise specialist and clinical Pilates teacher, specialising in working with people with cancer and after stoma surgery.
I’ve worked in the fitness industry for over 25 years. I’ve pretty much done everything – coaching, teaching classes, personal training 1:1, teaching Pilates, cardiac rehab, cancer rehab, biomechanics and running coaching.
I’ve written a book, hundreds of articles, numerous journal papers and presented at international conferences. I've worked in corporate gyms, hospitals, a hospice, my own studio, patient’s homes, indoors, outdoors and now virtually on zoom. I have trained and worked with thousands of clients and have trained hundreds of nurses around the world.
Basically, I’m a dinosaur.
I’ve always specialised in clinical populations and love working with people with medical conditions. I have a post graduate Masters degree in exercise science and I’m qualified in cancer rehab and clinical Pilates. I LOVE what I do, even after 25 years. I consider myself incredibly lucky to have had such an amazing career and have touched the lives of some wonderful people.
I now specialise in working with people who have either a cancer diagnosis or have had stoma surgery, or both, and I’m recognised as a global specialist in this field.
I’m proud to work for ConvaTec as their Global Exercise Consultant as well as running my own private consultancy and exercise service. I also work at Hospice in the Weald as a volunteer exercise specialist working with the physiotherapy team.
My particular passion is about abdominal rehabilitation after ostomy surgery and I’m especially interested in hernias.
I know… it’s niche.
You can imagine how I answer the ‘So what do you do?’ question at dinner parties.
But I love being an expert in this field and I’m constantly learning, doing research and adapting my thinking.
I am privileged to share my experience, understanding and knowledge with the stoma community and with clinicians, and in 2020 I decided to dedicate my career and business to this specialist area. I’m super proud to be working with Professor Gill Hubbard on the HALT trial which is looking a parastomal hernia and clinical Pilates. And prouder still when she recently said this quote in a meeting 💕🤗
But it all started in 2010.
There I was training for an Ironman triathlon – Challenge Copenhagen to be exact. The fittest I’d ever been. Invincible and top of my game. Ha! Not so fast.
Severe abdominal pain took me to our local A&E in the middle of the night. I'll never forget dragging the poor kids from their beds looking bewildered and clutching their teddies, as my husband took my to hospital.
It turned out that I had a perforated colon thanks to diverticular disease and needed life-saving surgery that night. I had no clue that I even had diverticular disease. I’d never heard of it and only 6 days earlier I’d raced a half ironman triathlon (although some weird night sweats should have been a clue if I’d stopped to pay attention).
It was the curviest of curve balls you could imagine.
Anyway, this meant major surgery and having part of my bowel removed and a stoma formed. The ironman got shelved – and staying alive become the only goal.
Things didn’t go smoothly though, and I had 5 further major surgeries over the following 2 years. To say it was a challenging time would be an understatement. I couldn’t eat for months, thought I might never eat (or run) again, we thought I had some sort of intestinal failure, had lost over 3 stone in weight and had complication after complication. It was miserable. I hated everyone who could either run or eat, and I hated having to drink ensure shakes when my family were tucking into Christmas dinner. I didn't care about the stoma, I just wanted to be well enough to eat, run and enjoy life.
Eventually I met the wonderful Professor Sina Dorudi and had a successful operation in 2012 and, finally with a permanent stoma, started to make a recovery.
During this time I realised how shockingly bad the post-surgery advice was. There was no information about abdominal exercise and rehabilitation for people with a stoma. Not one single person could give me proper advice on how to do the right core exercises or what was safe and what wasn’t. Almost everyone I’ve met with a stoma since says the same thing.
So I set about working through my own rehab, developing exercises that felt safe and appropriate and using modified Pilates to help me get my strength back. I basically figured it out for myself.
Alongside this I started running and training again and quickly got my fitness and confidence back. I also trained with CanRehab and APPI in Clinical Pilates to bring my qualifications up to date and become more specialised.
Around 9 months after surgery I did the Jungfrau marathon in Switzerland. It was beyond stunning and the most joyful day of my life. After all I’d been through, to get to the finish line of such a tough marathon was overwhelming. I cried tears of joy the whole way round and for days afterwards. The feeling of accomplishment was like nothing I’d ever experienced.
The following year I took part in the Himalayan 100. A 100 mile stage race in the Indian Himalayas. I had huge doubts that I’d be able to do it. Stomas, dehydration, long distance running, Indian food and high altitude don’t mix well.
Somehow though I did do it. I ran every step of those 100 miles. It was incredible. To this day the race medic (ironically a gastro specialist from Delhi) still talks of this ‘Crazy English woman with a stoma. We never thought we’d see the day when someone with a stoma did this race, but she did’. Its’ only slightly embarrassing.
This short film was made by my friend Tim at Focuspull.. it tells the whole story of my running journey and the Himalayas. Take a look.
After that, there were lots of up and downs. It took a while to get my hydration and fuelling right and there were lots of mistakes, mid race vomiting and electrolyte imbalances. I also suffer from adhesions and regularly still get blockages, pain and hospital admissions. Sigh.
But I got it together and worked out some strategies and I’ve now completed 34 marathons and many ultras, stage races, multiple marathons (3 in 3 days), climbed Mount Toubkal in Morocco and a 120-mile stage running race in the Rockies in Colorado.
I’m not hugely fast or competitive, I just love running in beautiful places and the privilege of being alive, healthy and well enough to do it.
Now I’m at the point, where I feel my stoma is just part of me. Most of the time I forget it’s there. I introduce myself at nurse conferences where I’m meant to be talking about stoma rehab, and often forget to mention the fact I have a stoma at all. It’s so insignificant for me now.
That said, it drives my desire to support others in the same situation and I remember how hard it is at the beginning, how vulnerable you feel and how difficult things can be.
But it’s not about me anymore at all. And I think that’s hugely important in order to have true empathy to help others. I need that level of detachment.
The top line is that I’m a professional practitioner and fitness trainer, I just happen to have a stoma too.
Over the last few years, I’ve worked on some amazing projects and collaborations.
Here are some of them:
In 2016 I started working with ConvaTec to develop the me+recovery patient rehabilitation programme and also a nurse training course. This project has taken me all over the world, speaking at International conferences to thousands of nurses and patients. I’ve also published 4 articles in medical journals sharing this research. We’ve now trained 350 stoma nurses in the UK and it’s been launched in countries all around the world. We are about to introduce it to nurses in Japan and that’s hugely exciting.
My book was published in November 2019 and was the first book to be written about bowel cancer and exercise. The feedback from patients and clinicians has been amazing and I’m so glad it’s helping so many people.
I’m proud to be part of the HALT trial (Hernia Active Living Trial) which is looking at core abdominal and clinical Pilates exercises in people who have a parastomal hernia. This is being led by Prof Gill Hubbard and team at the University of the Highlands. We hope this initial feasibility study will lead to a fully funded study in the near future.
It’s been a fabulous journey and is still hugely exciting. I’ve travelled the world, presented at conferences in Berlin, Texas, Ottowa, Philadelphia, Rome, Copenhagen and Portugal. I’m currently working on projects to launch me+recovery in Japan and Israel for ConvaTec.
And now The Ostomy Studio is here.
This is the first ever virtual Pilates studio (with live classes and online videos) for people with a stoma. Accessible to anyone anywhere in the world. Cool huh?
I’m in a privileged position and I want to change the conversation about stomas, exercise, rehabilitation and hernias. I combine my professional qualifications, passion for Pilates and exercise with personal experience of what it feels like to live with a stoma.
I want to stop the fear, to encourage people to be active, not to be scared of lifting and moving and exercise. And for clinicians to guide people to do the correct post op rehab exercises (starting straight away!) and to have a more encouraging conversation about movement, recovery and returning to exercise and life.
My goal is that a clinical Pilates and core exercise protocol becomes a NICE guideline for EVERYONE having stoma surgery.
We WILL make this happen in my lifetime… I promise.
In the meantime, The Ostomy Studio is here, pulling together all the strands of my work, experience and expertise and I’m so very proud of it.
I’m joining the dots between movement, rehabilitation, clinical Pilates and stoma surgery recovery and reducing the risk of hernia. And I absolutely love it.
Although there’s still lots of work to be done, I’ve tried to create a platform which has something for everyone. People can book 1:1 sessions with me on Zoom from anywhere in the world. There are live Zoom group classes and a library of ‘on-demand’ pre-recorded classes for people to follow in their own time.
As for me, I love the strength I have in my core now and the ability to do advanced Pilates exercises with ease.
That alone is hugely empowering and gives me so much inner confidence. That transfers into my running and day to day life when I’m doing housework or lifting furniture.
The process of abdominal and core /pelvic floor rehabilitation after stoma surgery is vital.
Everyone should do it. Learning to engage and connect with your deep inner core muscles as part of the rehab process is like rebuilding your foundations. It will help reduce your risk of hernia and help you put the building blocks in place to move onto more strenuous stuff. It’s basically therapeutic exercise and rehabilitation based on Pilates and it’s essential for everyone.
Anyway, come and find out more about Clinical Pilates and what’s involved.
As for me. I have some running and adventure goals in mind. Top of my list is the Cape Wrath Ultra in Scotland. 250 miles of running in 8 days. I have no idea if I can do it and it’s terrifying even to consider. But if I put it in writing here, I’ll have to do it! Ha.
Drop me a message if you need more info or want to join a class 😊 I’m here for you.
Sarah Russell MSc
Clinical Exercise Specialist
Clinical Pilates Teacher
Founder of The Ostomy Studio