Let’s talk Ichthyosis and digestion issues!
This fortnight has been a doozy (or should I say a poozy?!).
Something I don’t talk about much is that the type of Ichthyosis I have (Netherton’s Syndrome) is linked to digestion issues. Many people with Ichthyosis have food allergies – sometimes multiple. I’m lucky that I don’t – but I do get a reaction on my hands and lips if I touch shellfish (I’m really holding out to let shellfish go!). And most people with Harlequin Ichthyosis and Netherton’s Syndrome experience failure to thrive as babies and children – because our bodies burn so much energy renewing skin. I experienced this – I was always on the smaller side – and had a very fast metabolism until I turned 30. I still eat a lot, but am a bit more mindful as I age.
The digestion issue that I have is irritable bowel syndrome. When I was in my early 20s, I had heaps of tests to see if I had food allergies or intolerance – because my stomach would bloat and I’d need to go to the toilet suddenly after eating processed food like bread, cakes and chips. The tests came back negative – and so I reduced these foods. And then I saw a geneticist who specialised in dermatology and she asked if I get swollen lips when I eat shellfish, and if I get a sore stomach, and I said yea and yes! It was such a relief to know that ichthyosis was the reason for this, and I could reduce my intake of processed food to manage it.
But this fortnight, with moving house and some other stresses, my stomach has not been happy. I have seen the back of the toilet door a lot.
So I practiced some self care. Made some chicken and veg soup with homemade chicken stock; had plenty of cups of mint and ginger tea (mint is in our herb garden), plain oats cooked in water, and a few Imodium tablets. This morning my appetite returned and I made a pumpkin pie smoothie with steamed pumpkin, banana, oats, yoghurt, vanilla, maple syrup, and cardamom, cinnamon, and nutmeg.
And my stomach is finally feeling happier, and so am I, hence the selfie. Such a relief.
Have you had an unexpected symptom of your rare medical condition?
Images: 1. A selfie of Carly, a woman with a red face and short dark curly hair, wearing an apricot tee with coral coloured flowers and green leaves on it, and a brooch that’s a bunch of coral coloured flowers with green leaves and clear wrapping. She’s slightly smiling. 2. Looking into a cup of mint and ginger tea. 3. A big pot of chicken and veggie soup on the stove, with a spoon in the pot.4. A glass filled with a pumpkin smoothie, next to a platter that’s got a brown cow and a black Labrador on it, in front of white tiles.