person standing in front of a giant colon that is blocking their path and there is a fork in the road that leads in a different direction

Major life changes due to diagnosis

For many people, a diagnosis of IBD has brought about some pretty major life changes. For some, that has been purely dietary changes. As someone who has had to forgo a huge list of foods in the past, I can confirm that being forced to change your diet alone, feels pretty major! Sometimes, it’s not the foods you can tolerate, it’s the times you eat or the portion size! All of these things that we took for granted before, suddenly seem like huge hurdles!

Then there’s getting used to new routines, which may include an eating schedule and taking medications at set times of the day. Without reminders on my phone shouting at me, I would still never remember!

Re-evaluating life during sickness

Being sick often means we re-evaluate our life; what and who is important, what we are willing to accept and where we want to end up. This can lead to whole new choices being made in terms of education, career, hobbies, and relationships. Sometimes it is our priorities that change, and other times it's simply that we no longer have the energy to live at the pace we did before.

Denial and acceptance of a UC diagnosis

What we learn from our tough times differs from person to person, and depends on so many different factors, such as how old you were when you were diagnosed, disease progression and even just your personality type. It can take a long time to go from diagnosis to accepting what that means long term for you, and until you accept it, you can’t re-focus and prioritize. There’s probably a long period of denial and just feeling like IBD has stolen your life from you, for all of us!

When I was diagnosed, I was only 19 years old, so my life had pretty much revolved around drinking and socializing. I basically went to work all week to fund recreational activities. Looking after my health was not something I even thought about.

The emotional toll of surgery and post-op complications

A week after I had been admitted to hospital and diagnosed, I had emergency surgery to remove my colon and my first ileostomy. This, plus the weight and hair loss, moon face from steroids and the post-op complications, including C. diff AND sepsis, had all taken their toll on my emotional wellbeing, and my confidence. It took a lot of hard work and effort to get back, and it still takes continual effort to sustain!

Life changes in the face of illness

I felt like I had stared death in the face. I was suddenly aware of my own mortality, and that life was short. I made some changes, like moving out my mum’s house and being a bit more grateful for each day pretty quickly, but I still lived in denial about the impact UC and no colon would have on my life long-term.

It took years for me to realize that there were parts of my life that had changed forever, and to accept that I had to find a new version of normal! When I finally did, I began making changes to my life, for the better. I escaped a bad relationship and realized my worth. I got a new job in a new industry, starting from the bottom and on very little money. I started to look closely at my friendships, and I cut out the people that made me feel bad about my choices and about my health. I began to research my disease and to listen to my body more. I went back to square one with food diaries and symptom tracking so that I could understand what I could control and what I couldn’t.

Taking care of both physical and mental health

Don’t get me wrong. I did not make those changes overnight! It took years to get to where I am now, and I have made more education and career changes along the way. At times, I have still really struggled with both my physical and mental health. I’m constantly thinking about what I put in my body, my energy and stress levels and the company I keep. I have to make a conscious effort to continually take care of my health now, and I’m only human, so I still slip up! Finding time to de-stress, do things I enjoy and ensuring that I have things to look forward to can be difficult, but it’s a must! It’s what life is all about!

Did your diagnosis prompt you to make any major changes? I’d love to hear about them!

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