Medical Autonomy

Medical Autonomy

I have written many times on my personal blog and on here about the fact you don’t have to keep using the same ostomy appliance as you were sent home with from hospital. You don’t have to stick with any bag etc that doesn’t suit your needs and there most certainly is a bag out there for everyone! Sometimes we just have to look a little harder for them. I am having issues with peristomal skin and leaks; the leaks are causing contact dermatitis and I am having a really crappy time with it all if you can excuse the pun.

My stoma nurse has been fantastic sending me samples, doing house calls and thinking about me after hours and ringing me or texting me. Obviously her first port of call was sending me products that are sponsored via our hospital and that’s fine because each company has good products it’s just finding what works for me. So my skin is a huge pain in the ass I am allergic to so many different bags and I ended up being allergic to one of the ones she provided; she was like “okay let’s move on to the next product”. Which is helpful as she respects that I am the expert on my own body and I appreciate that not everyone has a stoma care nurse that is like that and that upsets me.

Her next idea was to try a two piece again, I used to use two pieces and had success with my skin but I never really knew when to change the pouch. For instance was I changing too often or too little? I have a huge issue with wasting medical supplies and the NHS money. She said I should change the pouch every couple of days, which I suppose is fine. This leads on to one of the things that I want to talk about this month and that is mixing two piece products!

She sent me a Hollister pouch and a Dansac base plate; I hate the pouch it is not for me and I don’t care about the visuals it just wasn’t practical and when I have had other pouches that don’t cover me in poo when I empty I will choose them over the Hollister ones. I have only ever taken a dislike to the white Dansac tre base plates and that was because I was allergic to them! I always found the novalife to work fine for me I just preferred using Peak Medical’s Ileomate products. Since my nurse opened my eyes to using two different products I thought I wonder if I can use the pouches I like from Peak with the base plates from Dansac; so I have got some on order with my new DAC (delivery appliance company)

Well I couldn’t work out on the Dansac website if the base plates were convex or not as it just didn’t say! So I have the two piece from Peak coming – what can I say I really like their products and no I’m not being paid to say that! However I would like to think if I needed some more of the baseplates my stoma nurse would be happy to chuck some my way to test this theory of mine and I will update you all on it as it unfolds! Maybe it will be a case of Dansac and Hollister work because they are sister companies and use similar coupling systems I will just have to wait and see.

I guess it does help that like I said I have a nurse who tries to think outside the box and makes every effort to work with me and talks to me on both a professional and a patient level. I worked incredibly hard as an advocate until my mental health robbed me of my confidence in my experiences and knowledge. In my day job if I am on the “patch” I change stoma appliances regularly, I help discuss pros and cons of new products and the importance of hernia PREVENTION wear – yes I feel the capitals was needed and I’m pretty sure Comfizz HQ do too! In fact I know so as it goes beyond being a paid job for them as bowel disease and hernias is more of a close to home subject for them. My surgeon also talks to me on the same levels as my nurse and I think more healthcare professionals should talk to us like that; as they are the experts on the surgeries and products but we are the experts on our bodies and what works for us.

Having health care professionals empower us (where possible) in making decisions regarding not just our bodies but procedures and products would benefit everyone in my personal opinion. As a teenager and young adult I didn’t have any pure autonomy over my life as a lot of my choices were second guessed by my parents – out of love not control thankfully. It would often taken weeks of talking or just me going ahead and doing it for things to go my way. Medication was a huge one for that and there wasn’t the information around 15 years ago that there is today. Regardless of your illness, disease, condition taking charge and researching things is always going to go one of two ways:

1) You will be supported by your medical team and they will give you honest, unbiased opinions on your options – this is what my current medical team do

2) You will be shot down and ignored – my suggestion there is even though it is disheartening or tiring keep going to different professionals. There WILL be someone out there willing to help you it’s just a faff getting there

So to sum up my ramble of a post!

Don’t be afraid to mix and match products (maybe just order a sample so if it doesn’t work you aren’t left high and dry!) and take charge of your medical care because you are the expert on YOU!

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