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Viewing: Blog Posts Tagged with: crohns disease, Most Recent at Top [Help]
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1. Living in Fear

My son, Max, turns ten at the end of the month. In December 2011, only about a week and a half after his youngest brother, Elliot, was born, we rushed Max to Children's Mercy Hospital in Kansas City, Missouri because of blood in his stool, a positive test for malicious bacteria, and some joint pain. Five days, several blood tests, a colonoscopy, and sundry medications later, Max was discharged with a diagnosis of Crohn's disease.

He's had struggles over the last four years, little Crohn's/Colitis related things that anyone familiar with this monster will know well. Things took a nose dive this past December, and between mid-December and the end of January, Max spent five weeks in the hospital. The doctors tried new meds and more meds, but in the end, my almost ten-year-old had his colon removed on January 20th. All of it.

I do not like to live in fear. Show me the monster, and I will meet it head-on. Now that Max has had a very necessary surgery, he's living with a "temporary" colostomy bag. Temporary in quotes? Yes. He's had one subsequent surgery to resection/restructure his small bowl, and we should have another to "reconnect" his "parts" down the road. Here's the fear and frustration part: his GI specialist and surgeon disagree as to the timing of this final surgery. The GI doctor is full of "what ifs" and "possible problems." Talking to him is a lesson in bodily horror, something with which I struggle, both as a writer and a human. Yes, there are possible problems if we reconnect. The surgeon is more optimistic. Neither agree--neither have even spoken to each other as of this writing--but we are faced with a decision: When to do the final surgery.

I do not like to live in fear.

I've learned all too well that life will bring tragedy regardless of what we do. I lost my father to brain cancer, my first wife to postpartum psychosis, and Max has this awful disease. None of them "asked" for it with dangerous living. This isn't another story of someone "getting what he deserves." I cannot and will not believe in a prosperity gospel when two good, caring adults and one innocent child face such monsters. Bad things happen to everyone, and we are defined by how we respond.

So what to do about Max? In two hours, I'll listen to his surgeon make a case for re-connection. Max has expressed his lack of love for the bag--something that if things do not go well after re-connection, he may have to live with, anyway. I've always been one to steer into the storm rather than trying to run. The storm is coming either way, and when we lie to ourselves about having control... well, that's a fast track to fear.

I will not live in fear.





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2. The Complete Low-FODMAP Diet

The Complete Low-FODMAP DietTwo months ago you’d have drawn a blank look from me if you mentioned a FODMAP. Or rather, the FODMAP acronym. Today, it seems to be integral to my eating life.

After some seven years of turning up to various doctors complaining of an assortment of annoying but arguably not life-threatening symptoms, it looks like we’ve finally worked out what’s causing my issues: fructose.

That’s essentially a sugar that’s contained in a bunch of foods that make up the FODMAP grouping, or Fermentable Oligosaccharides, Disaccarides, Monosaccharides, And Polyols.

High-FODMAP foods have been linked to a bunch of food intolerances, including Irritable Bowel Syndrome (IBS) and Crohn’s and Coeliac diseases. Low-FODMAP foods, on the other hand, seem to make those of us whose bodies flair up when we encounter high-FODMAP foods very happy.

As someone who studiously steers clear of anything involving the word ‘diet’, I was dubious about The Complete Low-FODMAP Diet‘s ability to convince me to start and stay with it. So it’s testament to the strong communication and communication design of this book that I consider it a worthy purchase and read.

Research-rich, it delivers a trove of detailed information in largely lay terms, which means it’s not overwhelming and people like me can have a red-hot crack at adopting the diet. I’m impressed, especially so as the book has whole sections and a sample weekly menu plan for vegetarians and vegans (they also have ones for coeliacs and so on).

This means I’m not cobbling together information and coming up with my own approximations of how the diet would apply to me. Which is pretty much par for the course with any other diet or recipe I’ve ever attempted.

That’s not to say that the diet isn’t confusing, because it kind of is. With foods anywhere from onion and garlic to apples on the do-not-eat or eat-minimally lists, there’s nothing hugely intuitive about which foods are high- or low-FODMAP. That may be why the diet took so long to really take off.

But, having been loosely following the low-FODMAP diet for a month or so, I can testify that this diet is already improving my allergies/intolerances. And doing so in a way that doesn’t compromise my overall long-term nutrition. Which means I should probably fully commit to it and stop faffing about.

The avoiding onion and garlic thing is, I have to say, indescribably difficult, with those two tasty vegetables forming the basis of just about every cooked food and every cooked winter food I’d currently like to consume.

I have also joked that, as a vegan on the low-FODMAP diet, I’m pretty much the most nightmarish dinner party guest ever. I’ll forever need to be turning up to people’s places armed with my own food in tupperware so as not to send them (or me) into what-on-earth-is-safe-to-eat meltdown.

But that’s a small adjustment to make in light of the more exciting healthfulness I’m feeling. Plus, there are some tasty-looking low-FODMAP recipes at the back of the book that warrant some road testing…

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