Recovery from Mixed Connective Tissue Disorder & Learning to Eat Again after Tube Feeding

All feedback is wonderful. But some is way more personally precious than others.

When I first met this patient, she was being PEG-J tube fed after developing Mixed Connective Tissue Disease at 14 and her entire digestive system shut down as part of this (that’s a very simplified and perhaps non-reflective description of what happened - but it will do. A PEG-J is a tube directly into the jejunum, where you are fed using a formula feed). She ate NOTHING orally. She didn’t want me to change that. She wanted me to tell her if we could get some better feed formulations and she could maybe take some supplements to support her system. Full stop.

My first consultation with this patient was intense. We spent over two hours together and covered less than half of her history. Her list of medications was an Excel Spreadsheet of 4 A4 sheets of paper, with current meds a whole page to themselves. And she didn’t want to stop them. And - sorry for the graphic detail - but she was doing manual Peristeen evacuations every other day, each one taking hours at a time.

The day after I consulted her I flew up to Shetland to see my family. On the plane I spoke to my mother about her case. I had no idea how to tell this 20 year old woman what I needed to say. I sent her an email asking for more time to complete her report - but also asked her just to send me an overview of her typical day. She responded with a diary which demonstrated that her entire life and every shred of her focus was about illness.

I prepared my report. And bless this woman… I laid down a challenge. She came to me because she knew I had been PEG fed, so she knew I knew the trauma. And I challenged her to get off the tube that had become a lifeline, but also a quite literal thorn in her side.She didn’t email me back for many weeks. When she did, she was honest - she said she had been shocked, frightened and she didn’t like my suggestions. But she also knew I might be right… and so we started work.

This woman is phenomenal. When you go through what she’s been through your fear of food is a trauma every time you put anything to your lips. You are scared of drinking water. You are not really living but to think of changing anything is almost more than you can bear. And do remember that her digestive conditions are SECONDARY to her primary issues. As this wonderful woman knew: getting her onto food was just step one. We have many more steps to go.

So to read this last night made me cry.

All I did for this patient, this young girl, was help her to believe a different future was possible. I opened a doorway and stood alongside her whilst she walked through it (with endless support from her mum). Anyone who has worked with me knows my demeanour. I will laugh lovingly at your nonsense (I challenged this patient when she said things like blueberries instantly gave her diarrhoea!). But I will also help you burst through the fear that gives rise to the nonsense, and fill you with real self-knowledge and awareness, alongside faith, hope and belief - in yourself and in life itself. I try to offer compassion when people feel they’ve messed up - and confidence in them when they don’t feel they have any in themselves. And most of the time, honestly, I’ve no idea what I do.

With this patient, we just broke down barriers together. In fact - I cracked the surface and she steamrollered them away. She had scares (negligent medical people telling her to be afraid mostly) but we got her onto supplement drinks: from one sip (not one Fortisip, literally one sip of a Fortisip) a day to THREE whole drinks.And then, all of a sudden it seemed, we got her to University and got her through a Nando’s. Actually scratch that - she did that herself, then told me afterwards and I nearly fell off my chair.

For those who don’t grasp what I’m saying: tube feeding is reserved for total digestive peristalsis and motion breakdown. It is kept for when swallowing function, gastrointestinal tract tone and general movement through the whole digestion process is impaired - and/or for when, for some reason, nutrients are not being absorbed.I know that this level of dysfunction is not a life sentence. This is what I asked this patient to believe. And goodness me, having her faith in me was at times like the world’s greatest pressure. But I believed in HER.

It never happens that we’re ready to take tubes out. Not for people who need them (as opposed to being forced to use them). It’s regularly an ‘emergency’ situation that dramatically requires removal. And then, suddenly, the freedom you feel is insane. Because you never realised you were so trapped and violated.

And we don’t tend to ever want to go back. The fact that this girl doesn’t have to is honestly the best news I’ve received in 2020.I am proud of the work I did here. Maybe that’s uncouth or un-British to say so. But I am SO proud that, as a practitioner, I had the courage to follow my instincts and help this young girl heal. Not just feed herself up with different homogenised formula. But HEAL. And that I trusted my gut enough to write her a report she hated and am so stubborn that I can’t not follow my conviction that it is my job to give patients need, not necessarily what they say they want.

We will work on the phobias that remain for this patient - the piercing of your stomach with a tube is an invasion only known when experienced. But we will get there. SHE will get there. She’s tough as nails. I’m just delighted that I was able to re-focus her toughness. From ‘stick it out, it’s fine’ resilience - to ‘I can change this’ determination on progress, on a future, on health.

She’s now at University training to be a psychotherapist. Jeez, anyone who sees her will be helped SO much. In many ways, touching lives like this is a privilege. Because I don’t do anything - and yet I get to witness the miracle of human fortitude, power and grace every day.