I placed my order for colostomy supplies this morning, nothing unusual in that, it’s a monthly occurrence.
I received a call a few hours later from the stoma supply company to say that some of my request had been rejected by my doctors surgery.
And that if I needed to discuss it with them I should give them a call.
So I did, and what transpired in that conversation is what has led me to be sitting in my car outside the food bank I volunteer at sobbing my heart out.
I’m sitting here in my car taking in the conversations I’ve just had.
The upshot of the conversation is that the GP practice feel that I have been over using the bag release spray (the adhesive remover spray that detaches the bag from my skin to change it).
And that the national guidelines state that a patient should use no more that 3 squirts per bag change.
The ridiculous part is (actually there are many ridiculous parts, but this is a thinker) there is no measure of squirt. It’s not a dosed trigger spray, so it’s not a designated amount. You could press on it one time and empty the entire canister and that could technically be “1 squirt”.
She asked me how many squirts I use per bag change. And I had to be honest and say I have no idea, I’ve never consciously thought about it. I spray it until the bag gently peels off, with no resistance.
The indignity of being questioned by a stranger on this made me feel so small and insignificant.
I became a cost cutting exercise, under the tyranny of guidelines, rather than a human being with feelings…emotional and physical.
Honestly, I want to curl up in a ball and hide.
I feel so vulnerable and sad.
I am at the mercy of others, and what they deem to be sufficient for me to be worth.
I am a very happy go lucky ostomate, for 13 years I’ve just merrily plodded along. I have always been strong and positive and passionate and powerful and pragmatic and forward looking.
I never once thought of myself as vulnerable and weakened, or God forbid - a victim.
My stoma, my survival from cancer made me stronger.
For the first time in 13 years I feel I am extremely vulnerable, and at the mercy of other’s decisions, and as it stands right now as I sit stifling sobs in my car I wonder if my mental health is going to take a hit.
Am I strong?…or am I only as strong as the actions of others allow me to be?
I can’t explain how it feels to be treated like I’m playing the system over using a prescription medication. This is a bag release spray remember - not opiates.
I felt like they thought of me as a benefits scrounger, and that I am unworthy of what I was asking for, and that should be grateful for what I was being permitted.
But I did try to get the person to see it from my side.
I said to her that the release spray, the stoma supplies in general are my toilet.
So if she could imagine I closed all the toilets in the world to her, and she could only use them when I dictated she could. That’s what they are doing to me. How would that feel for her?
It’s also been pointed out that asking how many squirts is the same as asking how many sheets of toilet paper you use. We’re all different, it’s not up for discussion or debate.
I use enough that I never get any resistance from the bag, so it glides off. The reason I do that is because if I’ve ever not used enough spray in the past, and I have to tug the bag from my skin it causes the skin to flare up and become sore.
This can be very uncomfortable and need medical intervention.
I’m really hoping that a solution can be found. I’m hoping that this is just a temporary thing from them. An idea to cut costs that wasn’t quite thought through on a human level.
I guess I thought I would be able to self fund it, but the stoma supply company replied to my email to say it’s not possible to buy supplies from them that they don’t manufacture. So as it stands right now, everything is up in the air. The gp surgery might not supply enough, and now it transpires I can’t actually buy the ones I need to make up the short fall.
If action had been taken in good time to check for cancer. I wouldn’t actually be in this position right now.
I’ve never dwelt on the what if’s before, it wouldn’t serve any purpose. It still doesn’t, but today I’m thinking about how this could have all been avoided.
Today I’m wondering if I’m worthy of 6 squirts of release spray…
*I've heard back from the lady dealing with the issue.
She put my case for more additional sprays across to the head of prescribing I'm assuming.
I have now thankfully been granted the ‘extra’ sprays.
It's a relief of course. But the distress I have felt all afternoon is indescribable.
I have spent the entire time questioning if I'm doing something wrong, if I'm over using the spray.
If I'm taking something I'm not entitled to?
I felt unworthy and worthless. An unnecessary burden and expense on the NHS.