Kaila Prins about Coping with Eating Disorders: “I see it as a challenge that I want to overcome every single day”
What’s it really like to live with chronic health problems every day? How do you deal with the physical symptoms, emotional turmoil and practical problems? In this interview series, real life ‘spoonies’ share their experiences and tips.
Tell us a little about yourself.
My name is Saffron. I am a filmmaker and an IBD patient.
When did you first get sick? How did your illness progress over time?
I was diagnosed with ulcerative colitis in 2009 when I was 21 years old. When I was first diagnosed I was put on a drug called Salofalk, which is 5-ASA medication. This medication was well-tolerated, safe and got me into remission quickly, but as the years progressed it became less effective.
When it stopped working as well, I was often put on rounds of steroids to get my flares under control. I also started experimenting with diets, supplements, and mindfulness techniques in an attempt to get my condition back under control, but had little luck.
During your sickest years, in which ways did having ulcerative colitis affect your daily life?
There was a 5-year period where I don’t think I ever went one week without flare symptoms. Those symptoms included – sorry to be graphic – urgency, blood and mucus, and painful cramps.
Sometimes these symptoms were severe. I can recall a handful of particularly bad episodes, lying on my bathroom floor sobbing because the pain was so intense.
In my daily life I began experiencing anxiety around certain “trigger” situations. I had dealt with so many close calls over the years where I barely made it to the bathroom in time. So anytime I was stuck in traffic, or in line at the grocery store – basically any situation in which I couldn’t get to a bathroom in less than a minute – I would start panicking. Even on days that I was feeling relatively well, this worst-case-scenario mentality and fear of humiliation would overtake me. Because of this fear I often cancelled plans, put off doing basic errands and generally tried to stay home as much as possible.
How did you cope with the symptoms and the practical problems related to ulcerative colitis?
I kept a detailed log of all my symptoms, everything I ate, which medications I was on, my stress levels, etc. in an effort to decipher some sort of pattern. I was always trying to gain some sense of control over my condition.
If I had to travel by plane I would fast for the entire day until I arrived at my destination in order to avoid any surprise symptoms. In hindsight, I think a lot of my coping mechanisms were an attempt to reduce my anxiety around my condition, yet the coping mechanisms themselves also contributed to my stress and anxiety.
After exhausting all possibilities, you ended up trying an unconventional method to heal your ulcerative colitis. How did you come to that decision?
Disclaimer: As valuable as it is to take control of your own health, please always consult your doctor for medical advice tailored to your unique situation. Any medical treatment can involve risks to your health and should not be taken up without the advice and supervision of a qualified specialist.
Everything on The Health Sessions is meant for informational purposes only and cannot replace a consult with an appropriately qualified medical professional.
I had been following the research on fecal microbiota transplants (FMT) for years. The theory is that the microbiome, or a lack of diversity in the microbiome, can contribute to an ulcerative colitis diagnosis and symptoms. And if you could alter the microbiome, you might be able to improve a colitis patient’s symptoms. One method of doing that is through FMT – implanting someone else’s healthy stool into the gut of a colitis patient.
Based on my research at the time, the clinical trials for FMT for colitis were showing a 30% remission rate at week 8, which is on par with most biologics on the market (one of the most common treatments for this condition). Yet the procedure was not well known. Every time I brought it up to my doctor I was met with skepticism. I think his skepticism came from the fact that there was not a lot of data yet on long term risks, and no easy way for him to “prescribe” it to me.
For ulcerative colitis FMT is still in the research phase in North America, meaning the only way to access it is through a clinical trial. I did not live near a trial, so that was not an option for me. I thought I would just wait for it to become more widely available, but one day, out of the blue, I met someone who had done fecal transplant himself, DIY-style at home, using his mother as his donor. And he had great results. He went from being severely ill and hospital bound to being in remission for 6 years with no medication (he has now been in medication-free remission for over 10 years).
I like to think of myself as a critical thinker. I knew the data on this procedure, and I knew that this person’s miraculous results were not the norm. The possibility of the same happening for me was slim. That being said, there was something very powerful about hearing firsthand the experience of someone who had once been in my shoes and had overcome the hardships of chronic illness. It was a time in my life when I felt so desperate, so in need of hope, that I allowed myself to open my mind to the possibility that this might just work for me the same way it worked for him.
I researched what criteria was needed for a good donor – it’s a long list! The person basically has to be a health superstar. Lucky for me, my partner fit all the criteria. And he was willing. We tested his stool. And while our testing wasn’t as rigorous as the testing they would have done in a clinical trial, I was given some assurance by one doctor that the fact that we were intimate partners who share a home and a bathroom meant I was unlikely to catch anything from FMT that I wouldn’t have caught anyway. Disclaimer: There’s no way to ensure this process is completely risk free – even with testing, an infection in the donor’s stool or blood can be missed and passed along. I was aware of this risk, I did my own risk-to-benefit analyses, and decided to proceed.
What inspired you to document your recovery journey on film?
The reason I decided to make this film is I was just so obsessed with the topic, I wanted an excuse to meet and interview some the top researchers in the world! The decision to include my own journey doing fecal transplant was less straight forward.
I’ve worked on character-driven documentaries before where my job was to follow someone’s story as it unfolds in real time. It’s very rewarding but very hard work keeping up with a subject’s day-to-day life and asking them to share intimate details with you. With myself as a subject, it was actually just logistically easier than any other character-driven project I’ve worked on! The hard part was opening myself up to potential judgement and criticism.
I think at the time I was feeling such angst over my condition and situation, I had a hard time caring what anyone thought of me or my decisions. I just wanted to get better.
At this point however, I don’t have that angst anymore. I have been in remission for over 3 years. It’s hard for me to look back at the version of myself in the film because my life looks so different now. As this film comes out I find myself wondering – why did I decide to share this? I could have just moved on with my life, never having to talk about it again, never having to defend my decision to skeptics. I guess at this point my only reason for putting my story out there is that it might resonates with the right people: People who need to see their struggles represented, or who find a bit of hope in my story. The way I found hope through the person who inspired me to go on this journey in the first place.
What helped you to stay hopeful, motivated and persistent throughout your healing process with its ups and downs?
My (now) husband/stool donor helped me stay hopeful. I think a big reason I decided to try fecal transplant at the stage in my life that I did was because I was seriously thinking of my future and our future together. I wanted to build a life that included children, and travel, and fulfilling work, and I was fearful that my illness might prevent me from pursuing some of those things.
I was worried that because of the things that could hold me back, I might not be the type of partner that he deserves. His dedication to trying to help me heal, in whatever way possible, was so selfless. He believed in me and my pursuit of this goal, but also made it clear that he would be on my side even if it didn’t work out. He has provided me with a sense of safety and security that helped eliminate some of the stress, anxiety and shame that had previously made my condition so unbearable.
If there comes a day when my symptoms come back, I feel better prepared mentally and emotionally to deal with it now. I think I am more forgiving of myself now, and more willing to accept support.
What would you like to tell others who are diagnosed with chronic illness?
Stay curious and stay hopeful. Don’t be afraid to ask for help and keep looking for solutions that make your life easier. Surround yourself with people who respect your boundaries as you do the things you need to do to better yourself.
Watch an exclusive clip from Saffron’s documentary “Designer $hit”, to be released on September 21st, 2023:
For 3 days only, you can watch the documentary for free on the Designer $hit website (until September 24, 2023). On November 14th, the film will be released widely.
