My family has personally experienced this and it is terrifying to learn how little information and how few resources there are for young children with IBD.
Right out of the gate you hit the issue that there simply aren't many "very early onset IBD" (impacting children under 6 years old) specialists because historically there were so few cases. We've seen well regarded IBD specialists who reflexively try to order tests and procedures that their own hospital will then refuse to even perform because they can't be done safely on young children. The IBD specialists are in general simply unfamiliar with young children because of the historical rarity.
From the VEO IBD specialists we have worked with they all report that the numbers are exploding and no one has any real idea why.
On top of that most of the more modern and effective treatments for IBD and Crohns aren't approved for young children at all and even top tier insurance will fight tooth and nail against covering them because their use in children can be considered off-label.
Chloramine (chlorine and ammonia) in the water we drink has been linked to IBD, IBS and Crohn’s. Most large cities switched to this now in the US (San Francisco switched in 2004). It is also difficult to filter out of water. We shower in it too, vaporized into our lungs with hot water.
Why does San Francisco put anything in the water? It has some of the best tap water in the country. Hetch hetchy water exceeds all federal and state criteria for tap or bottled water. Raw.
I don't get why people think that water is somehow safe because it comes from some magical place.
Water still needs to be transported 167 miles from HH, during which it can pick up plenty of things, like lead, chromium 6, bacteria and all sorts of other fun stuff. Never mind it has likely sat in a local reservoir for some period of time and who knows what the condition of those things are.
Before it was chlorine and then apparently that wasn't enough, so they switched to chloramine. Then, they do shit like this, with some weird spin on it:
I had several fish tanks (one ~400 gallons) that I was caring for during that switch over. I tried to do filtration and additives and the fish were never the same, they all died. It just seems intuitive that adding something to water that kills fish almost instantly, couldn't be great for humans either.
Needless to say, I only drink RO water, put a filter on my whole house and in my shower. That probably isn't enough, but at least it is better than nothing.
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Even when disinfection occurs during water treatment processes, bacterial regrowth may occur in the long journey through water distribution systems.
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Bacterial regrowth in water distribution systems can occur because of the accidental entry of microorganisms at cross connections and broken pipes and the recovery of microorganism populations affected by disinfectants in water treatment plants.
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Since this article was written, there have been fires almost every year. The water also moves from HH to other reservoirs along the way. Let's also not forget that the dirty air from SF, blows east.
I also wasn't talking about rainwater, I was talking about reverse osmosis.
Right out of the gate you hit the issue that there simply aren't many "very early onset IBD" (impacting children under 6 years old) specialists because historically there were so few cases. We've seen well regarded IBD specialists who reflexively try to order tests and procedures that their own hospital will then refuse to even perform because they can't be done safely on young children. The IBD specialists are in general simply unfamiliar with young children because of the historical rarity.
From the VEO IBD specialists we have worked with they all report that the numbers are exploding and no one has any real idea why.
On top of that most of the more modern and effective treatments for IBD and Crohns aren't approved for young children at all and even top tier insurance will fight tooth and nail against covering them because their use in children can be considered off-label.