By Lisa Pearce
I always knew I wanted to do something amazing for my 40th birthday, it’s a milestone, and I wanted to celebrate. It started off well: I went to South America for 3 months and finished in New York with 17 friends for my 40th Birthday.
But since then, I have had more struggles with CF-related issues than ever before!
Colonoscopies
Did you know that once you turn 40 you have a higher chance of getting bowel cancer with CF? And so begins the “fun” journey of having a colonoscopy. Now, for most people, they drink 1 litre of Colon prep, and don’t eat the night before – if only it was that easy for CFers!
My 1st time was in 2017, I had never been in hospital for more than a night or 2 for surgery, so staying in hospital for 5 days was not ideal for me. The actual prep starts 10 – 14 days before when you start a low-fibre diet, have Movicol daily, and stop all vitamins. Low Fibre means everything white, white bread, potatoes, rice. It made me realise I actually eat healthier than I thought as no salads, vegetables, and grains are allowed.
Friday was the day of the procedure, so it started with no eating from Tuesday unless you call jelly, lollies, lemon sorbet, and Colon Prep a meal. The first time I had to drink 5 litres of the prep and whilst I don’t think it tastes too bad, it’s still not the best. The nurses come in and check your bowel movements to ensure you are all clear and ready Friday morning for the procedure.
Thankfully, in 2017, I got the all-clear for 5 years.
Fast forward to January 2023, this time I decided I could do all the prep work at home and just go into hospital the night before; they make out you could be running to the bathroom or have an accident at any time which just wasn’t my experience.
Unfortunately, I needed 7 litres as I still wasn’t 100% clear the day of the procedure…but once I was done, the doctor advised they couldn’t see all the way through to the end of my bowel and I would have to have another colonoscopy this year. Mentally I said no, it is intense. I knew I would have to come into the hospital for the full duration of my stay.
In July 2023, I was back for my 3rd colonoscopy, this time 11 litres of colon prep and an enema, which was not as traumatic as I thought it would be. But I got the all-clear for another 5 years!
Diabetes
Since I was 30, I have been working out regularly at the gym, running, etc, so imagine my shock when in 2021 I was told I have CF-related diabetes. I was a mess, I had to take some time off work for a few days. I just didn’t understand how this could happen to me. I knew this had nothing to do with my lifestyle, it was a related issue with having CF. My biggest concern is how this will affect my travels in the future – will I have to have insulin? Do I need to change my dietary requirements?
The CF medical staff have always been fantastic, but I felt with diabetes I wasn’t really being given clear advice on what to do, and how this will affect me long term. I still struggle with it now, I am on a Type 2 medication called Metformin for now, but more tests will always be needed to see if it’s progressing and if my pancreas isn’t producing enough insulin.
Sometimes I find anxiety kicking in if I haven’t eaten in a few hours, and I find myself saying I need to eat and get a little panicky, hopefully, this will die down the longer I get comfortable with having diabetes.
First admission into hospital at 45
In January 2022 a few days before Australia Day, I had been feeling unwell for some time with a chest infection & cold, which I just couldn’t shake. Then on Australia Day, I called an ambulance, I was feeling very unwell, breathing was hard, and I was getting scared.
At the hospital everything was okay, I didn’t have COVID-19, it was just a chest infection. They sent me home with antibiotics and arranged an appointment for me with the CF clinic for that week.
Usually, my check-ups are easy, I never had any issues with my health, but this one was different. My breathing test dropped from 120% to 103%, so talking to my doctor, I told him I needed to be admitted. He immediately knew how sick I was as I was so anti being in hospital; it was my claim to fame, I was 45 and never had to stay in hospital.
Over the course of 5 days, I was pumped full of drugs, had multiple nebulisers a day, and saw the physio daily for airway clearance.
As the week went on, I felt better but it was such a significant moment for me, I remember crying when I knew I had to be admitted: “Would this become more regular now that I am getting older?” I wondered.
Since then, my lung function has returned to 120% and thankfully, I haven’t needed to be admitted again.
The views, experiences or comments shared on this website are not medical advice and may not reflect opinions or beliefs of Cystic Fibrosis Community Care. Always seek the guidance of your doctor or other qualified health professional with any questions regarding your health.
