Stoma community

Stoma community

Community is a word that has become part of my daily vocabulary, more specifically since my stoma surgery and finding my tribe on social media. For all its negatives, for me, the positives of connecting and sharing on it outweigh the negatives. I began sharing my story 7 years ago, when I had my first child who was born with the same condition that has caused us to need stoma surgery. I didn’t have mine then, I was living with a j pouch from having my first stoma reversed as a toddler. Having a baby with a stoma was something no one in my immediate friend or family circle could relate too. Plenty of loving supportive people tried their best and were there to support me, but when it came down to it, no one truly could understand what it was like. I remember sitting in countless baby groups and listening to parents complain about sleep regression and teething, wishing those were the only things I had to worry about. I was living in a cycle of hospital appointments, admissions, medical interventions, and consumed with sleep deprivation and worry.  

I hadn’t been one for sharing my health condition online in any way, and having an invisible illness you wouldn’t have known. But feeling alone in the parenting pool and having little to relate to, I went for it. I used my tiny corner of the gram to document the journey of those early years. Fast forward 7 years and I have had another baby the same, making it double trouble with the kids, making three of us with stomas in the house with myself having stoma surgery in 2020. I started sharing my own journey more and connected with others who were having surgery at the same time. 

The feeling you get when you connect with people who just get it can not be matched. It is a much more common place to see meet ups within the ostomy community now than when I first started sharing. You may find they are named ‘IBD meet ups’, but if you have an ostomy for another reason, you should be welcomed. I am fortunate to know many in the community from my role as an ambassador and the opportunities to connect this has brought. I may not have IBD, but I have always been welcomed like others with open arms, and don’t feel any different when in their company. 

When attending meetups be sure to follow the steps below:

1. Tell a loved one where you will be and when, and with whom. Safety first.

2. If you are feeling anxious beforehand, think of the positives you will get out of the event, try not to focus on the negative feelings that may crop up. 

3. When you arrive, if your instincts say it isn’t for you then leave. Anxious feelings of meeting new people is one thing, but if you feel very uncomfortable you don’t need to put yourself through that.

It may be that connecting through socials is more than enough for you and that’s great! I always share the point that it is most important that you do what feels comfortable, not what you think you should do or what other people are doing. It may take months, if not years, to share and connect with people about your condition and that is totally your prerogative. 

The first ‘Get Together’ with Eakin Healthcare where I met my fellow ambassadors left me with such a euphoric feeling that I was determined to get a tattoo to mark the occasion! We were all from different backgrounds, ages, and at different stages in our lives. Despite this, we had a similarity that made meeting them feel like we had known each other for years. It was a mixture of excitement, nerves and inner peace at the same time. If you are debating whether to attend a meet up, you will see them shared on peoples stories on Instagram. Some ostomy related charities and organisations have local events advertised on their website too. As I type this blog I am about to go away for the weekend with three ladies who I have known for a few years and meet up with for coffee, but decided we wanted to take a weekend to chill, get away from it all, and enjoy each other’s good, bad and ugly stories. I know it will be a weekend of healing and core memories made. I encourage you to do the same!

Until next time,
Rach x