I was clearly always meant to have a stoma even if my body had a 29 year break from my first! I was a baby for the first one, then had it reversed at 2 years old meaning I simply can’t remember a thing! Last Summer I got the call during the first lockdown that my second stoma surgery was booked in, and after the family isolating for a week in I went. My Hirschsprungs Disease together with carrying a baby did not go well together leaving me in chronic pain unable to walk. My surgeon was confident my quality of life would greatly improve with a stoma and thankful he was spot on!!
1 year later
I can’t believe how fast this year has gone. As awful as Covid has been, I was thankful for the slower pace of life needing two surgeries in five weeks, when my stoma needed refashioning due to it retracting. My fun anatomy threw another curveball with the surgeons unable to operate where initially planned. Having to operate near the same place my first stoma was meant complications and my stoma looking like a sinking ship disappearing back in.
My handsome little boy has had 10 operations to date and as for myself, I’ve lost count. Going into hospital is so normal for us it’s just like another family outing! Jake gets excited to see the familiar faces that he has grown up meeting. I treat it as a bit of down time and the chance to just be and let them do their thing to hopefully overcome the latest hurdle.
Truth be told, I thought the stoma surgery would be a breeze. I could change Jakes bag with my eyes closed and nothing fazes me but my gosh was I wrong. At first, I couldn’t look at it, I didn’t want to change it and when it leaked a few hours after surgery I stood in front of the bathroom mirror thinking where do I start?
I was disappointed in myself for being this way. It was a mix of emotions seeing it on my own body and not having my loved ones with me with no visitors allowed. I took to Instagram to reach out to the amazing community and gained comfort from their words. Family and friends were amazing but they couldn’t relate to what I was going through quite the same. As for Jake, he took one look to have a nose and went off to play, not bothered in the slightest!
My stoma has opened the door to some exciting opportunities working with Pelican Healthcare, given the opportunity to trial their new products and carry on my role as one of the ‘Be The Change’ voices. A movement designed to educate and open people’s eyes to what it means to live with a stoma. I started this important role as a mum with a child who had a stoma to raise awareness of the barriers as a parent in that position and how to navigate life with a little ostomate. Little did I know how soon after it would be a direct impact on myself also.
As I turn 32 this month I am focussed more than ever to grab every opportunity that comes my way and not let my health hold me back. If my stoma isn’t behaving itself I don’t let it get me down, it is what it is and I try my hardest to keep moving forward. I am forever inspired by fellow ostomates and what they have achieved not letting their conditions dictate their life.
My mentality towards my stoma is dramatically different compared to a year ago. It’s important to give yourself time to accept your new body at a pace that is right for you. Don’t compare yourself to others and don’t expect too much at the start. The world will be your oyster when your healed and ready for it.
Rach @gutsy.mum x
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