Stomas, Bowel Issues and Eating Disorders - The Balancing Act

 

Why I’m done with healthcare

This hasn’t been easy to write, as I’m sure it might feel uncomfortable to read for many. I understand this and please know this is my own personal decision, and I would never want to discourage anyone else from seeking support or medical care. Your life and care should be totally up to you to decide, and you 100% deserve support if you want it.

 

After spending over half my life trying, my parents going through hell, and being let down time after time, I’ve made the decision to write an Advanced Decision, essentially refusing most life-sustaining care should my body start to give up.

To understand where I am at today, you’ve first got to go back to when I was 11 years old, over 15 years ago…

Moving to Secondary School and having some severe bowel issues compounded to trigger a pretty severe eating disorder, and even more severe (undiagnosed Autistic) meltdown & overwhelm. Since that day, I and my family have fought, fought some more, and even more again to get professional support, diagnostic tests, interventions, and to try and figure out exactly what’s going on. This has resulted in:

·        Over 400 consultations with GPs, Therapists, Specialists, Surgeons, and everyone in between

·        Over 100 separate tests

·        8 Operations

·        1 proven case of medical neglect, and several more unproven

·        Tens of thousands of miles travelled

·        Tens of thousands of pounds in travel, medical, and other expenses

·        4 years of lost work

·        Permanent bowel damage

·        Permanent physical developmental gaps

You would have hoped that at some point during the past 15 years, that someone… just one person… would have stepped in and taken responsibility, fought by mine and my family’s side to help and find out how to best support me.

You would have hoped that someone would have said “this has gone too far now” and actually given me some support, whilst exhausting everything to try and find out if there was a better way to do things.

But this has never happened. Every specialist has discharged me because:

·        I’m “too complex”

·        “We can’t find anything wrong”

·        “Not sick enough”

·        Not the right type of sick

·        “I don’t know what to do”

·        “It’s just psychosomatic”

There are many more too, most of which I have blocked out of my mind, hoping they never return as it’s just a reminder of the utterly disgusting treatment my parents and I have been through.

So… where does that leave me? I’m not sure.

My body is knackered. I have a permanent stoma, permanent bowel issues which cause constant pain and regular blockages, chronic testicular pain thanks to them missing an abscess until it burst, developmental gaps due to having no Testosterone for most of my adolescence, and chronic leg/hip pain. My brain is fried, I am burned out, and there is no improvement in sight.

So I’ve decided to withdraw consent for escalation of medical care. This means I won’t have referrals to specialists, no more invasive tests, no more debilitating attempts at “treatments” that won’t work. It also means no more seeking therapy or eating disorders support (as they won’t help anyway).

I have also decided to write an Advanced Decision, which may seem severe for a 26-year-old to do, but I know it’s the right thing to do. I am currently hanging onto the minimum quality of life I am willing to live with, anything less than this – life isn’t something I want.

So my Advanced Decision is to essentially withdraw consent to any medical care or intervention for any conditions/emergencies/issues that have a risk of leaving me in a worse position than I am right now.

I don’t want to be artificially kept alive, I never want to get to a stage where I cannot manage my own stoma care, and I cannot go through any more hospital trauma.

What does this mean? Well it means that I will keep going for as long as nature (and the limited medication I have to keep things “stable”) keep me going for. When nature causes something to happen, it will happen, and I will let it take its course. For example, if it’s something easily “fixable” like a minor infection then sure I’ll have antibiotics, but if that infection progressed and caused sepsis, that’ll be me done.

This has been a rally difficult conversation to have with family too. I cannot imagine how painful the past 15 years must have been for them, and I know this hurts them, but am so grateful for their unconditional support and respect for my bodily autonomy.

I don’t say this to upset anyone, nor to garner sympathy. I don’t want that and this isn’t all about me… this is about a system that has failed a family, and is failing countless more at the same time.

I want to use whatever time nature allows me to raise awareness of these failures, be unapologetic in challenging people/organisations/systems, and really trying to create a change so that no more families have to go through this trauma, pain, and have to resort to these decisions in the future.

Everything I am going through right now was preventable… so many times, so many opportunities to stop this happening.

But everyone has their limits, this is mine.