After nearly a year with my freaky friend – Bennie, the stoma – was evicted. And for damages done to the property, his deposit was not refunded.
Even after a two year period where the entire world went into lock down as a result of a pandemic and people seem to want to duel to the death over toilet paper and vaccinations, I can say, without a doubt, having an ostomy remains the strangest thing I have gone through. Ever.
It is weird to think about, even more weird to look at and exponentially weirder still to feel on your person. It seems like such a little when you physically compare the size of a stoma to the rest of the body. But that little thing triggers such a gigantic change. I only grasped the magnitude of this change incurred as it was all happening.
I had known from the get-go that undergoing the colo-rectal resection in December 2020 there was a possibility that I would end up the bag – if not, probability. The cancer had been in such an area that simply removing it would mean removing a portion of my colon. But honestly, hesitantly googling it, when your A-type personality’s must-know attitude wins the mental argument, does not even begin to prepare a person for what is to follow. This unexpected roller coaster that you were gifted a ticket to ride is fascinating, terrifying, annoying and exhausting all at the same time.
Despite how tough it was, I did learn a lot about my body, my heart, the people who love me and the ostomate community (which is bigger than you might think).
Your whole relationship with your body changes almost immediately.
Everything you think you know about your body and its usual “functions”, for the most part, becomes nil and void, and you start all over.
You are reset to the starting point from which there is no real moving on. Unfortunately, there isn’t much potty training to be done when your new “hole”, for lack of a better word, has no muscles to train. Whatever your body wants that’s what your body does – whether you are mentally prepared for it or not.
Personally, I felt like I reverted back to the “infant” phase of my life. The difference between myself and a normal baby is that they don’t have the constant burden of self-conciousness and overthinking weighing them down. When changing the bag, I had no control over what the stoma decided to do. We just had to work quick, clean fast and hope for the best when that new bag has gone on. Leaks happened and they sucked.
Insecurity sneaks in SO easily.
The surgeries and the presence of the stoma changed my body, but also me as a person in so many different ways.
I became so conscious of what I eat, because I knew within 20-30 minutes whatever went in would come out. As a result I inadvertently started cutting out some food stuffs along my 12-month journey. The sight or the smell of it made me a little queasy or the feel of it in the bag made me nervous, so I just avoided it altogether after a while. I know my drastic response was not necessary for health reasons, but it’s what I did at that stage to cope.
I got used to the process of emptying and changing, but the implication of the bag stuck with me. I did my best to conceal it. It made me sad to see my body in the mirror – the scars, the wounds, the bag, it is A LOT to get used to, especially when you know that this is pretty much (give or take a bag) how you will be looking for the rest of your life. The only place it really did not bother me was when I was at home, because at home at least I had a measure of control should something happen and I could hide comfortably in one of hubby’s oversized shirts.
I have always suffered at the hands of Miss Social Anxiety. I never much cared for what people think of me as long as they weren’t unkind (either flat out or passive aggressively) about it the whole time. I’ve never thought myself particularly pretty by the world’s standards, which is something I prefer. The nice thing about getting older is that you start to realise that you don’t need the “world’s opinion” in your pocket to be content with yourself.
Having the bag however, magnified the awareness of potential unfiltered unkindness from or unintentional discomfort of those around me. Whenever I went out I felt hyper aware of the bag, and not only because the possibility of a leak in public petrified me. Yes, it saved my life, but I’m not naive – it is not something pleasant to look at it. And if I myself didn’t want to look at it the whole time there was no way I was going to force others to look at it.
I salute all the ostomates out there who are confident enough to where bathing suits and crop tops. How some people gain courage while others’, like my own, gets shattered was a beautifully-tragic lesson to learn. I just shows how we grow in different directions when being broken by a similar blow.
Support, support, suppport.
In hospital, the whole having-a-stoma situation felt manageable. Retrospectively, this is obviously because the amazing nursing staff were the ones doing the “heavy lifting” on my behalf. They knew exactly how it works and what to look out for. I will always be thankful for all the nursing staff and the ostomy sister that I met during this time. They love what they do and they loved me during a time when I was battling most to love myself.
When I was finally able to go home, I truthfully, I was not the most graceful and independent of ostomates, There were multiple woe-is-me periods last longer than it probably should have. I do lay some of the blame or the turmoil on the fact my body was still recovering from major trauma and the lack of proper sleep that came with being constantly worried about leaks.
Thankfully, there were some more angels. I am fortunate enough to have a registered nurse friend who was willing to donate her time and passion to helping me conquer those early days. And then a husband, who I am convinced has a heart made of solid gold, to support me through the next part. Both of them lent the kindest of helping hands without giving it a second thought. I learned that not all the ostomates have the support of loved ones and that is heartbreaking and infuriating.
If you are reading this and you are one of those going it alone your entire being is made of the purest diamond – don’t let anyone or anything tell you otherwise. There are probably lots of unseen loads of washing, public bathroom panics and tear-soaked sleeves, but I hope you know that there are people out there who are so incredibly proud of you even when they don’t even know you. You manage get up each time and do it again without fail – and for that alone you deserve medals of perseverance and quiet grace that the entire worlds supply of money can buy. You are so much stronger than you think.
If you are reading this and you know someone with any kind of stoma, PLEASE be kind to them. It’s hard. Whether they chose to get a stoma in the hopes of improving their quality of life or it was a medical emergency, they could not possibly know how hard it would be.
Shattered Warrior 