Saturday, October 3, 2015

World Ostomy Awareness Day 2015

Today is World Ostomy Awareness Day 2015. I've had my Ostomy and stoma since July 28th 2015 so just over 2 months now. I'm still getting used to it (I nick named my stoma Jabba as it reminds me of Jabba the Hutt and it jibber jabbers away to itself) and have good and bad days. Some days I accept it and others I loathe it and the way it looks and how it makes me feel. I'm still very prone to stomach upsets and having your bowel come out of your abdomen isn't fun. I am getting better with the practical side though and managing that. I've had 3 bag leaks so far but think I'm a little better at knowing how to deal with them... 

These are two of the types of bag I have used (I've had 3 so far). I'm currently using the bottom one and am working up the nerve to try a shower without wearing a bag at all. The digestive system is an involuntary process and the intestines do their own thing pretty much constantly. They are always digesting food and stomach acid as well as producing gas which all goes into the bag. I regularly empty it and change it every 2-4 days completely. If I shower with it uncovered I'll just have to take my chances and have everything ready to put a new bag on straight afterwards and be prepared it may be messy. 

My first photo post surgery. My surgery was for endometriosis but ended up being a lot more intense than expected as once they opened me up they found everything was glued together in my pelvic region. The stoma was not planned and was a surprise when I woke up.

This is me around 3 weeks post surgery I think. The bag covers my main scar running down from my belly button. You can see some of the scars on the side and my stoma can be made out inside the bag just about (the round red bit).

This is pretty much how it works. The bag is bigger than in the picture but it sits to the right of my belly button just slightly lower than it. 

I never knew there were so many types of stoma and Ostomy! I have a loop ileostomy so it has two lumens/holes. One is active and one isn't. For me the bottom hole is the active one which helps me to clean it a little more easily. 

As I said some days are good and I'm able to live a very active life. In this photo I'm in the white top and hopefully you can't even make out my bag. I managed to attend my first informal roller derby session post operation and somehow managed to skate 27.5 laps in 5 minutes! Not bad considering I haven't been able to skate or train in any way since April when I collapsed and began my surgery journey. 

I have good and bad days as I said and am due more surgery to remove one of my kidneys and hopefully at some point reverse my stoma. In between I am aiming to do as much as my body and brain will let me do. I'm not a quitter and am determined to get my life back as much as possible once all of my surgery is finally completed. 

I'm hopeful that reading/seeing this will help people realise what a stoma is and that it isn't the end of the world. You can still be active and lead a "normal" life. It's not something to be ashamed of although of course it can be highly embarrassing often. I decided to be open about it as hiding it made me feel worse, but it's a completely personal choice for each individual and there is no right or wrong way to deal with it. Feel free to message me if you want to chat about how it inpacts you or a loved one, I'm learning as I go and making it up but sometimes just talking helps. 

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