What have you learnt about your ostomy in the last year?

Never underestimate yourself

You may worry about how life will change following surgery. For me I was in chronic pain, living off a ridiculous amount of painkillers, and trying to make it through each day wishing the surgery would come yesterday. I was hoping to be able to reduce the pain killers and be able to walk without being in pain. I didn’t have any more expectations but when I started to feel better I started running. I enjoyed the freedom and seeing what my body was capable of. I figured I would try and run 5km and that would be more than enough. But why not push yourself? Why not explore what else you didn't think was possible? Think of all the things you wanted to do but couldn't do because of your illness? Anything that time just couldn't allow? Surgery makes you re-evaluate things and I certainly turned to my bucket list and started to push myself. I did a half marathon and committed to doing a tough mudder for charity. I want to travel more and make the most of the second chance I have been given. Surgery has a way of doing that and if it does for you too, grab it and run with it. Who knows what you could achieve?

Human connection is everything 

The friends I have made through this community are everything to me. Yes it's corny, yes it's cliche, but it's the thing I am most grateful for. Family and friends are an essential part of recovery of course and we would be lost without them, however being in conversation with another ostomates and knowing they just ‘get it’ is priceless. Myself and Ru @ru.talks.ibd had spoken for a while about organising a meet-up this year. We have seen a few of these in the community pop up and many of you have been and got so much out of them. What we discussed was having a safe space to meet and chat with people who have been affected by chronic illness. Whether you had a bag, a j pouch, had surgery planned, were a parent or a carer of a person with an ostomy, we welcomed them with open arms. When the day came I won’t lie to you, I was full of nerves! I hadn’t even met Ru in person yet but had met Amy @ibdwarriorprincess and Pip @phillipakayx through my ambassador role with Pelican Healthcare. Part of me wondered if anyone would turn up but boy did they… all of them! Those hugs were everything. Everyone lived up to expectations and were so warm and lovely. Lots of memories were made and I left feeling proud we had brought these wonderful people together. There are a few more planned next year through other ostomates and I intend to go to as many as possible. If the thought of such a thing fills you with nerves, I promise you, you won’t regret it. 

Feel every feeling 

No two people feel exactly the same with an ostomy. The situation to get you there, your support network, and how your recovery goes all contributes to the mix of emotions you can experience. For me it was very unique because my son already had a stoma since a week old and was 4 years old when I had mine recent one. I already had one as a baby, had a j pouch at 2 years old to then need another stoma at the age of 30 during the first lock down of covid. I haven’t met anyone in the same position and doubt I ever will. I have felt tremendous guilt for my son and what he has had to endure since birth. When it came to my own surgery I felt I didn’t have any right to feel negativity of any sort seeing my own child boss it. When I woke up from surgery though I couldn’t look at my stoma. I had been caring for Jakes for years, nothing fazed me. But when it came to seeing it on my own body I couldn’t handle it. It took me a few days to get my head around things. I was embarrassed that it did but on reflection there was no need. It's not natural to see an internal organ on the outside of your body whether you are used to seeing them or not. Nothing about an ostomy is typical for most people and it is perfectly normal to take a long time to accept your new body and be happy about it (or as happy as you can be). Some may take months or even years. Live by your time scale and feel all there is to feel. Try not to ignore or push down your emotions as they may surface later on down the line. Lean on your support network and the online community. Many of us are happy to answer any questions and provide comfort should you need it. 

Until next time, Rach x

Disclaimer: As always, this post is from our blogger, Rachel's, experience of living with an ostomy & Hirschsprung's Disease & from what she has researched. Nothing in our blog posts should be taken as medical advice. It's always best to consult a medical professional if you have queries or concerns.

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