#nutrison

I’m not sure if I’ve mentioned this before, but I now use sterile water through my feeding tube.

After in-depth medical investigations, it was concluded that injecting non-sterile water directly into my intestines, which are extremely fragile, could be the cause of some of my symptoms.

When we drink water, it first goes through the stomach, which acts like a natural a ‘filter’. But in my case, the water bypasses that and goes straight to the intestines, which can be extremely harsh.

On top of that, “regular” water (even bottled) can still contain residues or invisible microorganisms, which may lead to clogging or damage to the feeding tube over time.

Actually, the doctor who placed my tube in Switzerland was very surprised to learn that I wasn’t already using sterile water.

When I brought it up with my gastroenterologist in France… he literally didn’t care at all.

Luckily, I have a specialist doctor who understood my case and immediately prescribed sterile water.

One important thing: sterile water should not be my only source of hydration, because it contains no minerals at all. So I need to compensate by mouth with highly hydrating drinks.

Unfortunately, even with a prescription (and even though it’s listed as “100% covered”), sterile water is not reimbursed in France for home use.

My doctor and pharmacist did everything they could to find a brand that might be covered but no luck.

They explained that in France, sterile water is only reimbursed in hospitals, never at home.

So the result is: despite a clear medical need, I have to pay for all my sterile water every month, and it’s really expensive…

And that’s just one example. There are many other things I have to pay for out of pocket (eye treatments, specific vitamins, and more…)

When you add it all up, it becomes a real financial burden 🥲