How To Cure (Probably) Your IBD
Reader Comments (12)


Mandy

This might be my favorite dispatch ever.

Adele, who just turned three, has been on a stool softener pretty much every day since she was 9 months old. Our pediatrician kept insisting it wasn't addictive and that it is totally harmless. "But the warning right here on the package says not to use if for more than two weeks", I said. Not a problem, she told me.

We eventually got her to refer us to a specialist, a pediatric gastroenterologist, who said the same thing. "But don't worry," she said, "60% of my patients eventually get off the stool softener." "Ummm... that means that 40% are on a stool softener forever." "Yes."

She also insisted that diet isn't relevant. Not relevant to constipation? I just don't see how that's possible.

I second guess everything I've tried and worry that when I tried to fix it with diet I wasn't strict enough. Other people feed their kids such unbelievable crap, and they all love to share food.

It's incredibly stressful and worrisome and I fear that I may have screwed up her little GI system permanently. I my most spiteful moments I envision filing a massive lawsuit against both doctors and using any settlement money to start a public awareness campaign.

I'm so glad your story has a happy ending. It's encouraging.




Michael

Mandy. Wow. Thanks for that.

(You have unique taste in my dispatches. Or, put another way, you always seem to validate me totally when I need most.)

I'm so sorry about Adele's gastro-travails. I wonder if you might make a search for a doctor who is more sympathetic to, let's call it, holistic health? In TRANSCEND, Kurzweil and Grossman give reasons why most doctors are not dealing, and are unable to deal, with new findings in diet, wellness, and particularly testing. They say, If you're ahead of your doctor, go find one who's caught up.

This is the kind of thing I'd do if I could be bothered. But you've got a lot of additional motivation.

My sense is that it's pretty tough to screw up anything in the human body permanently. If my colon could go from the bleeding, suppurating, twitching wreck that it was... to its current picture of glowing colonic health... healing itself completely, only through dietary improvements... I'm sure Adele will be finer than fine.

I'd keep doing my own research, though.




Glynn

I know three people who have had to had that final operation and now have to live with a bag, so I've seen close up how awful it is. It's a life changer.
Considering how common a problem this is, you would think it was about time the government spent some serious money on research. If the cure was as simple as diet control, think of all the money they would save on medical bills for the operations.
(Since cost to saving is basically what they would judge success on)




Mandy

Glynn, I am so with you. If only the government were actually more interested in cost savings than in serving their corporate interests. I get more an more cynical every day about the power of corporations and their lobbyists, and the barely concealed pandering our politicians do to them. This is capitalism unchecked, and it's every bit as evil as we always knew it would be.

As for doctors, I had an epiphany last night. When we saw the GI specialist and told her about stool softener our daughter is using, the doc was oddly aggressive in her desire for us to take a prescription from her so we could get it covered by insurance. It's maybe $20 for a two-month supply and is an over the country drug, so I was a little puzzled by her exuberance. Then I realized... if we buy it using a prescription from her, she gets cash from the pharma company. Mystery solved.




Glynn

Absolutely. My son has eczema, pretty bad sometimes if we don't watch him like a hawk. He is nearly three and only now are we being refered to a specialist by the doctor. Pestering them got us there. They only seem interested in signing off those prescription creams that are only firefighting the problem and not looking at something more permanent. They are quite happy prescribing cortizone steroid creams for a 2 year old. And I know that is not good. (We use it very sparingly only if sore bit gets very bad)

I'm a pretty chilled out bloke, but it's hard not to get angry at doctors sometimes.




Scott Christensen

Just noticed your post and thought I'd relay my experience with diet and how it can destroy you.

Turns out that a high-sugar/carb/et al diet can effect people with asthma. Same basic principle as to what happened to you.

When I ended up in Tucson I started cooking and then baking because the girlfriend at the time LOVED food. She'd go do pilates for an extra 2 hours just so she'd feel less guilty about eating the gloriously complicated cheesecake I was making. [note: that obsession turned her totally hot]

I however was not paying attention to my diet and after a few months of making exotic muffins every day and eating said muffins my body went into a kind of "shock". Felt like I was going to die for about two weeks.

Slowly introducing foods again, paying attention to the effects, made me realize it was the wheat and sugar that was killing me...not to mention the cheese, meats, and a host of other delights!

For me it seems, wheat/sugar causes a yeast proliferation that settles in my lungs causing mucus and an irritation that causes the asthmatic thing. Just stopping wheat and sugar (and not a whole lot else) consumption has stopped asthma for me.

Doctors never want to hear that notion though. Even had one a few years ago argue with me because he couldn't sell me on a prescription.

The best thing in the world is when you try to get someone who is having symptoms you've had to try cutting out the wheat and sugar. Those foods, also in my experience, have a more addictive quality than alcohol. You go to an AA meeting and tell those people they can't have a donut and you'll get cut. [note: my father is an avid AA guy, he's about as addicted to sugar as I am and my suggestion to stop eating sugar was not met with...lets say...enthusiasm]

Some of the info encountered over the years seems to point to people of northern European stock being sensitive to wheat. Everyone is probably sensitive to too much sugars as the amount we consume is vastly out of proportion to what we evolved to encounter.




Michael

Hey! Thanks a lot for that.

Glad you're hale now.

What happened to the pilates-hot girlfriend?




Scott Christensen

She got bored with me and my failing body and mental state from all the deadly food I was making and eating.

That's the other side of the wheat/sugar thing for me. Wild mood swings tending towards depression.




Michael

Ha! Whole other tale of woe.

When I finally went in to seek treatment for bipolar depression, it was when I was working for large-ish start-up in Silicon Valley. Place had fully stocked kitchens on all three levels, catered dinners every night, etc...

So instead of dealing with my issues (or my job), I was constantly shoving things down my gob: Haagen Dasz ice cream bars, chocolate-chip bagels, double handfuls of M&Ms, sugar-thick cafe mochas from the espresso/frother machine...

In retrospect, there can be no doubt that my blood sugar levels were just a rocket ship ride - alternating highs and insulin-reaction crashes - and that those were a *huge* factor in my mood disorder.

It was also the fattest I've ever been - I think I topped 180 - which of course just makes you even more depressed.




Gin Sayers-King

This was such a well written,clear article that I missed the first time. It gives me a better understanding of the disease and what you, Michael, have been through with it. Everyone with the disease needs to see this.




psiu

I know this is an older post, but originally saw it immediately after writing my review on "The Flood" (and thankfully, my review is not the most popular one there. I may have been influenced more by Blazing Saddles, Airplane, Spaceballs, etc than horror while growing up).

Something that had come to my mind during the book, was also along the lines of digestive/gut biome issues.

http://arstechnica.com/science/2015/11/single-course-of-antibiotics-can-mess-up-the-gut-microbiome-for-a-year/

In the comments, some good points are made that there is no real confirmation of the "probiotic" craze, ie studies showing positive effects.

Anecdotally, I went on a good round of antibiotics for bronchitis maybe a dozen years ago, and my wife recommended yogurt. "Pffft," I smartly responded. I eat yogurt pretty regularly now ( ;) ) and have to figure that some of the standard/original gut biome is gone and possibly replaced in part with yoplaitus bacillus.

Of course, studies dissuading handing out antibiotics like candy and preventative measures like a yogurt every other day probably don't mesh well with writing secret treaties full of handouts to (among others) the large pharmaceutical companies. *sigh*




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