Belinda of @listeningtomygut shares how she manages her Crohn’s disease with medication, nutrition, exercise, rest and support to live life to the full
Growing up in Joburg I was a healthy carefree kid who rarely got sick. I loved to read and play outside, and I really loved playing hockey in High School. At age 15, I became sick with what everyone thought was a stomach flu.
I was losing weight and doctors couldn’t figure out what was wrong with me, but my abdominal pain kept increasing in intensity and frequency. Doctors advised I drop out of hockey and rest more, until they could clear what they assumed was an infection.
It took three more years of pain and illness to come to a diagnosis of Crohn’s Disease.
Crohn’s disease is an autoimmune disease where inflammation presents in the digestive tract. Symptoms include abdominal pain, diarrhea, nausea and weight loss. There is currently no cure and Crohn’s is managed with medication and lifestyle. Sometimes, in the case of a bowel perforation or an intestinal blockage, surgery may be required. In situations like these, the removal of part of the intestine may be necessary. This isn’t a cure but can relieve pain and some symptoms and is usually done to save the patient’s life.
In 2005 I had a resection surgery, where they took out 50cm of my small intestine. I did all I could to avoid having surgery, but in the end it was an emergency procedure which saved my life. The operation helped me appreciate life more, and it did help increase my quality of life.
Over the years, I’ve learnt how to manage inflammation flares through medication, diet, exercise and a healthier lifestyle. My inflammation is currently under control, which means that with careful management of my lifestyle and health I can enjoy what feels like a second chance at life.
Below are the lessons I’ve learnt and how I choose health every day.
The Role of Exercise
It wasn’t an easy journey to get to where I am today. Having been malnourished for years it took a lot of patience and effort to increase my activity levels. One of the biggest lessons I’ve learned was to listen to my body. No one’s journey is the same, so while others can give us inspiration and motivation, it’s up to us to tune into what our body is trying to tell us.
Learning to read my body gave me more confidence that I am doing the best for myself and it’s easier now not to compare my journey with others. I started with yoga and walking with my dogs, which eventually became entering competitive trail runs, which I walked.
I started CrossFit a year ago and am so grateful my husband encouraged me to try it. CrossFit can appear very intimidating (some days are still challenging!) but the beauty of CrossFit is that it can be scaled. When I started I literally couldn’t do a single air squat or push up. The other day I did 90 push ups in an hour with other workout movements in between! The job of the CrossFit coach is to see what you can’t do yet and then find ways to get you there. The CrossFit community is extremely supportive and you’ll often see people cheering the person finishing last to keep going!
The bottom line when it came to exercise for me was to find my ‘why’. What is your reason for wanting to do it? That will last more than any motivational quote or fitness guru you follow on social media. For me it’s “Fighting for my health”. I’m taking this opportunity to work on getting my body stronger.
Using Food to Heal
Food that Crohn’s patients can tolerate can be very different from each other, so while there are some guidelines our diets can vary greatly. Due to previous surgery, my ability to absorb nutrients is compromised, so I have to keep a watchful eye on nutrition and avoid deficiencies.
For example, I have to get regular Vitamin B12 injections as the area that absorbs this vitamin was removed in the surgery (did you know specific areas of intestines ‘specialise’ in absorbing specific things?).
Often the food I can tolerate doesn’t seem like the healthiest option, but as I can’t tolerate fibre I have to eat more refined foods like white flour instead of whole wheat. I have found that the more my inflammation is under control the more I can add to my diet. It’s not a static list of foods. It’s an ever-evolving list that can shrink or grow based on how my gut is doing. Again – listening to my gut (pun totally intended) is so important.
Early on, I realised that education was going to be important; if I understood how our bodies deal with food then I could possibly help my body with the best type of foods for it.
Regardless of your challenge with food – arm yourself with knowledge. For example, in Nutrition for Dummies I read that freezing food or cooking food breaks down the cell wall structure a bit and therefore helps with digestion. Something so basic, but it helped me realise that sometimes a cooked apple is gentler on my stomach than a raw apple.
Other ways I learnt about food and how it reacts to me is by keeping a food diary. Tracking foods that I can or can’t tolerate helped me make better judgement calls on which foods to avoid when inflammation flares.
Consulting with a dietitian who specialises in digestive disease is priceless, especially in the beginning of this journey. Not all dieticians seem to be equal in this case, so you need to choose carefully.
As I often struggle with my appetite I am always looking out for food ideas and recipes to get me hungry and inspired. The Crohn’s book about diet was invaluable in helping me to understand how our bodies handle food
The Importance of Mental Health
Mental health affects physical health, and along the way I’ve learnt some valuable lessons, such as:
How to say no.
To not take on responsibilities that put extra stress on me, especially if it’s during a time when my body is struggling.
To be patient, and wait until I’m feeling stronger and better, even if it takes a few months.
To just breathe.
To break down a problem when it threatens to overwhelm me.
To be aware when I am stressed and to get better at stopping the negative thoughts before I go into vicious circle.
That the cost of certain activities can be too high. Try to work out what the toll might be, on your body and your health, before you commit to something.
That it is not worth it for me to keep up with the news. It can be so negative, which increases my anxiety, so I don’t listen to or read the news and I don’t own a TV.
You’d be surprised how much I know about what is going on in the world. How? Because people talk about it. If it’s important you’re bound to hear of it through friends and family.
I’ve become more aware of what impacts my mind and find some days I just don’t tolerate social media well. Too many negative posts and comments often just upset me. So instead of absorbing what ‘society’ says we should, I sit back and take note of how I feel after watching 2 hours of TV. Does it leave you feeling relaxed? Or not?
Remember that we can fool ourselves by staying busy and telling ourselves that we are doing something important. It’s just as important, if not more important, to find balance in our lives.
How Rest = Recovery
I’ve learnt to read my body’s signs. Our body often tells us when it’s under strain. It could be anything from a cold sore appearing, to feeling fatigued when you’ve actually been resting well.
When I ignored the signs, the whispers my body gave became screams I couldn’t ignore and it took longer to recover after those episodes. So I now take a step back when I notice the first signs and so I now recover faster.
I’ve been forced to take a break from CrossFit a few times. This used to make me anxious, but I’m getting better at being at peace with it because I KNOW that this is just temporary. I have the drive in me, I know my ‘why’, so I have no doubt that I’ll be back at it soon. Once you have that confidence in yourself you’ll be more gentle with yourself, more accepting of your decisions and understand why you made the choices you did.
The Power of a Support Group
I’ve found it can be quite healing, when you feel like your body is disintegrating, and a virtual stranger reaches out and says they are thinking of you, or ask how you are coping. It also helps with small day to day decisions that your doctor might not know how to help you with, such as good tips for what to pack when you are going on a road trip or things to keep in mind when you’re going to a new specialist for the first time and don’t know what to ask them about.
It took me a while to realise that even though I would love others to understand exactly why I make the decisions I do, they might never be able to. But to have a group of people that ‘get’ it supporting me – that is priceless.
I currently manage a Crohn’s & Ulcerative Support group on Facebook in South Africa and it can be very encouraging to be there for each other. Both for those who have been living with Crohn’s for years, like myself, and for those who have been newly diagnosed.
Right now, I’m looking forward to reaching many more goals and to living my life to the absolute fullest, and I’m planning my first overseas trip! I hope to make my dream to travel come true while I continue to get stronger every day. It won’t be easy, but I know I can do it.
#nevergiveup and #keepgoing are mottos I live by.
Born in Joburg, living in Cape Town, Belinda is determined to always find ways to live a positive life.
She’s dedicated to continually giving her body the tools it needs to keep fighting, heal and get stronger; and lives by the adage “Every single person we meet is fighting some kind of battle – show kindness”
Latest posts by Belinda Kitney (see all)
- Living with Crohn’s, Listening to my Gut and Finding Balance - May 16, 2018