We are so excited to shine the spotlight on Kate Mason, a palliative care nurse based in Halifax, Nova Scotia, and originally from Bracebridge, Ontario. Kate loves animals, spending time outdoors, reading, learning and eating good food in the company of good people; she also has IBD.
When were you diagnosed with IBD? What type do you have?
I have Crohn’s Disease as well as IBS. I was diagnosed when I was 18 and in my first year of university. Looking back I had a few flare ups when I was younger but the diagnosis didn’t come until I had a very aggressive flare up.
What types of symptoms were you presenting that made you seek a diagnosis?
It took me quite a while to be diagnosed. I had lost a great deal of weight, I had severe abdominal cramping that was unpredictable and made it difficult to walk or stand for any length of time, I had lost my appetite, I had been vomiting and I was very fatigued. I was misdiagnosed with a persistent bladder infection multiple times but was finally admitted to hospital for testing after multiple antibiotics were trialled with no success and I had a high fever. I had a colonoscopy while in hospital and that was when I was diagnosed. I was discharged on Prednisone and told I could expect to feel better in the next week to two weeks. It wasn’t until I met with my specialist weeks later, still unable to eat or walk very far, that I was told I had an illness that would not go away but would require a lifetime of management.
Do you avoid any foods to help manage your symptoms?
Yes definitely! I have a number of food sensitivities that I re-check every few years (I find they can change over time). The main things I avoid are: eggs, milk, highly processed foods, fried foods, alcohol and caffeine. I also cannot tolerate much fibre, so no salads for me! I avoid raw veggies and things like shredded wheat, bran muffins etc. I also do not eat red meat or chicken, so I will eat fish or occasionally some free-range turkey. But I try not to share this list of ‘bad’ foods, because then someone who has, lovingly, memorized the foods I avoid will see me eating a scrambled egg and say “I thought you couldn’t eat that”. I don’t have any hard and fast rules for myself. I have been known to play food roulette and try foods that might make me sick if I am having a craving – because sometimes I won’t get sick! So, if I want some ice cream a couple of times in the summer or an egg breakfast sandwich on a road trip because that’s the only thing that looks good on the menu – I have it and I am cool with facing the consequences of that.
Are you currently on medication for your IBD?
Yes, I am on Humira and it is the only treatment I have tried that has been effective for me. I have been on it now for nearly ten years.
How do you cope day-to-day to reduce your IBD symptoms?
I prepare all my own meals, so I spend a lot of time meal planning and meal prepping. I do go out to eat occasionally but I try to make sure that I am never in a situation where I have to buy something quick to eat because I have found that most convenience foods will make me feel very sick.
I practice yoga and mindfulness which helps me to manage stress (one of my main triggers).
I make sure I get at least 8 hours of sleep a night. I function best if I get more like 9-10 hours a night but I have found that hard to keep up with.
I try not to drink a lot of fluids with my meals so that I’m not diluting my digestive juices and so that there is less for my body to process at once. I had a small bowel re-section, so what remains of my small intestine has to work double time. This was advice I received from a few different healthcare professionals over the years.
How often do you have flare-ups?
I have very few Crohn’s flare ups since my surgery many years ago. Most of my flare ups now are due to my IBS. Crohn’s flare ups feel quite different, they are much more painful and usually involve bloating and abdominal distension. I probably have two or three minor Crohn’s flare ups per year. Each month I usually have at least a few days where I am dealing with an IBS flare. These are much less painful and more straightforward to resolve if I implement some dietary management strategies and self-care strategies.
How do you heal yourself during a flare-up?
I will switch to a soft foods and liquids diet, eating small basic meals, with few ingredients (for example: soups, coconut rice, chocolate almond milk, mashed squash). I will drink a lot of peppermint tea, ginger tea, electrolyte drinks and turmeric golden milk. I also eat lots of ginger candy (whether they help or not – I love them!).
I love my magic bag and hot water bottle, heat is a great pain reliever for me.
I slow down and give myself as much rest as possible by choosing restful activities like restorative yoga, doing a puzzle, getting a new book to read in bed, or going to see a movie.
What is your pro-tip for living with IBD?
The mind-gut connection is hugely important, so if you suffer from stress, anxiety or depression find something that works for you to maintain your mental health, stick to it to prevent flares and lean into it when you are having a flare.
What is one thing you never leave the house without?
Honestly I am a very forgetful person, so I am lucky if I leave the house with my keys and my phone every day! BUT I usually try to always have a book with me, because if I get bored I tend to get anxious – so a book is useful for keeping my mind occupied if I’m on the bus, waiting at an appointment etc.
Do you ever have bathroom anxiety? How do you deal with it?
I do get bathroom anxiety. It is not usually about whether or not I will be able to find a bathroom if I need one because I have pretty much always been able to find one when in need. But I get anxious about not having privacy and having to share a bathroom with people. Sharing a hotel room with a friend or a boyfriend on a vacation is my nightmare, for example.
Have you ever been in a situation where you were denied bathroom access? What happened?
It has happened before and it is always painful, embarrassing and stressful but I have always been able to find something else quickly so it ends up okay.
What has been the hardest challenge in living with IBD?
The year that I was diagnosed was really challenging and took a significant toll on my mental health, so it has taken time and work to move past that. The hardest thing since then has been accepting the unpredictability of the disease, that it could come back and throw me for a loop at any time, and also managing my fatigue.
What advice can you offer to someone who has just been diagnosed with IBD?
Notice and reflect on the environmental factors that preceded your diagnosis – these will be your first clues as to your triggers and this is incredibly important information in terms of future management of your illness
Know that you are not alone – you have a community of peers with similar shared experience who you can reach out to and connect with anytime you need them
According to my gastroenterologists, the first year after being diagnosed is typically that hardest because you are getting your treatment plan sorted out through some trial and error and you are adjusting to your new normal. So, hang in there and know that there will be better, healthier years ahead.
What’s one of your go-to, self-care tips for living with IBD to help reduce your stress?
Make mindful choices about your life and your environment. Get creative in your thinking and actively create a life where your environment promotes your health, or at the very least does not damage your health.
*A reminder that everyone’s experiences are their own. What might work for one person may not work for someone else. Everyone is on their own journey but it’s always comforting to learn about someone else who is living a similar one.