The biggest moment in anyone’s catheter journey is when you transition from thinking of a catheter as a short-term solution to a long-term solution. You can bear it short term as the catheter will be removed. It’s the long term – knowing you have to deal with it day in and day out that’s the harder part. Adapting to life with a catheter takes time. Here I share the things I wished I’d known when I first had to make room for a catheter in my life.
1. Get the right catheter equipment
Having the right equipment is so important. I knew so little about different catheters, drainage bags and straps. My very first night, I had to wake every couple of hours as I hadn’t been given a night bag. I didn’t know they existed! Waking every few hours to empty a leg bag is not a long-term strategy! During the day, I used to walk around with my catheter bag swinging around my ankles until I found you could get different lengths of leg bag. Also, I wasn’t advised how to secure it, and it was painfully precarious, moving when I moved, until I learnt to use a ‘G-strap’ to secure it.
I did not know there were so many different types of catheter, from different thicknesses to different styles of opening and positions of the balloon. I found that the tiniest change of product, like strap I used or choosing a different type of catheter would make a world of difference in terms of living with it more comfortably.
2. Learn how to cope emotionally
Emotionally adapting to living with a catheter takes time. I find my feelings about it fluctuate day to day, week to week. Sometimes it doesn’t bother me whatsoever. In fact, I love my catheter for allowing me to function again. Other times, I despise it. I grieve for my past life of sitting on a toilet, and look ahead to just see more procedures, more infections and a life peeing through tubes. I know that, however I feel, that’s okay, and it will pass as it’s all part of the acceptance process.
Living long term with a condition will have an impact on your mental health, so it’s important to find helpful coping strategies from early on. I talk a lot to others with catheters which really helps and I’m open with family and friends about it too. I use and journaling to help process the trauma of past procedures and try to fit in basic ‘self-care’ to support myself. There is no right way to cope with it, and it’s an ongoing process.
3. GET THE BEST MEDICAL SUPPORT
Medically having a team of doctors and nurses that understand you, your body and catheter are so important to make sure you have the right care. Having an amazing urology nurse has made all the difference for me so I feel less alone in coping with it all. I remember when my first delivery arrived, I had no clue what half the products were and felt overwhelmed! She’s helped me understand catheters and worked with me to keep trialling different methods with changes. She has also supported me trying different catheters until we found the right one. Having someone to turn to when something doesn’t feel right, or knowing who to call if you have a blockage helps you feel more in control. I think all catheter users become their own expert problem solver, but knowing you have contacts to help guide you makes a huge difference.
Written by Zoe McKenzie: Zoe Mckenzie is a Physiotherapist with chronic bladder pain and urinary retention, alongside multiple other chronic illnesses. She uses her experiences as a patient to help others feel less alone at coping with pain and medical conditions. Get in touch with Zoe at https://www.activelyautoimmune.com/
Watch our interview with Zoe for #ContinenceChats where she talks us through her journey of becoming a catheter user: