Ostomy online: loving yourself
Wednesday, April 22, 2020
Sahara Fleetwood-Beresford reports from the online stoma community on the value of self-care for achieving self-confidence
I am writing this on Valentine’s Day 2020, and, if you spend any time online, it’s hard to miss. In the ostomy community, there’s the usual mix of people expressing either their adoration for their significant other or their distaste at the money-making scheme. This year, I’ve been pleased to also see a wave of posts focusing on self-love, self-care and body confidence.
Confidence isn’t easy
Most people with a stoma have worried, at one time or another, that it makes them less desirable or sexy. This is completely normal when you’ve been through such a life-altering surgery. These worries can be a challenge when it comes to dating, especially regarding when to tell a potential partner that you have an ostomy. Worrying too much about whether people can hear or see the bag can cause real anxiety, as can concerns about potential odours or where to go when need to find a bathroom quickly. It’s no wonder that we’re prone to slips in self confidence.
Personally, I am well over it now. I love my stoma, because I love the quality of life it has returned to me. I am not, and never will be, as ‘well’ or as energetic as I used to be, but it allows me to continue experiencing things in life. My health over the 3 years before my current stoma is not really worth talking about.
Blogs about self-care
• ‘My journey to stoma acceptance – 11 years, 7 surgeries and 3 ostomies later’ by Sahara
• ‘Body confidence, self-love & relationships’ by Natalie-Amber
• ‘Be more gentle with yourself: 5 self care tips to try’ by Amy
I have been there. With my first stoma, I was so embarrassed. I hated myself and I hated it. I was 19 years old, had been diagnosed with ulcerative colitis for less than a week and had only been experiencing symptoms for 2 weeks before diagnosis. I had emergency surgery and had to face life with a stoma, and I did not want to. I basically pretended it didn’t exist. I didn’t want to talk about it or acknowledge its existence. I felt disgusting, and I did not allow my partner at the time to see it—ever. I wore really baggy clothes, often meant for young boys, to try to cover it up. Because I was pretending it didn’t exist, and didn’t talk to anyone about it, I had no idea that things like ostomy underwear existed. I didn’t even know that more than one bag existed, let alone that there were multiple manufacturers. It was only when I had my J-pouch connected that I felt confident again.
I had a second stoma for a brief period, 7 years later. By then, I had become part of the online ostomy community, which is what helped me deal with it.
I have a permanent stoma now, and I think we will live happily ever after. I did have times of doubt post-op, but since finding the correct underwear and the right bags for me, I barely give my stoma a second thought until the day of bag change. I don’t feel the need to hide it, and I talk about it with anyone who shows an interest.
I completely understand that it is difficult, and that the circumstances that led to having a stoma, the type of support available and the personal issues experienced will all play a part in how you feel about it. I have no doubt that negative reactions from others will also have an impact. There is a huge learning curve involved, and there is no set amount of time that takes.
It’s been great to see all the blogs being shared with tips about dating, self-care and body confidence. It means more people are getting there and are comfortable talking about it. It also means that there is a lot of information out there on the internet, should you want to look for it.
Support groups on Facebook
Loving yourself is not easy, even for people who have no health problems. We all have things about ourselves that we aren’t keen on, but they are part of who we are—let’s call them character building! Self-care is a great place to start on the journey to self-acceptance and, eventually, appreciation. Self-care isn’t just about lighting a scented candle and having a bubble bath. It’s about the tiny things we can incorporate into daily life, such as talking to ourselves a little more kindly and giving ourselves a few minutes when we can feel the pressure building.
Talking to people who have been through the same or similar experiences can really help. There are so many support groups online, should you need an ear, and many individuals like me who will always help if they can.
Sahara Fleetwood-Beresford is an IBD and ostomy writer, founder of #IBDSuperHeroes, trustee of Cure Crohn’s Colitis and Merakoi IBD Patient Expert
Website, Twitter, Instagram and Facebook