It seems like a page out of someone else’s life when I think about my husband’s diagnosis.
He was just 19 years old, a college kid experiencing worse-than-average intestinal distress after every cafeteria meal.
I was just The Girlfriend who heard the retelling of the doctor’s visits, the way his family doc pressed on a certain area in his lower abdomen which hurt like the dickens, and guessed – both immediately and correctly – that the eventual diagnosis would be Crohn’s Disease.
Crohn’s is a chronic inflammatory bowel disease in which the immune system basically attacks the small intestine, thinking it’s an intruder that needs to be eradicated each time the person eats.
It’s characterized by stomach pain after eating, continual diarrhea, weight loss, and inflammation in the small intestine.
I mostly remember a lot of laying down on the couch after meals, some missing class because of pain, and the process of trying different medications that lasted all the way through college. He went through the lower, gentle-side-effects class of drugs for Crohn’s, then he had an expensive infusion of something that I think was called Humera, but that might be the new name for the old one which was found to be totally dangerous – yikes!
Finally he was put on Prednisone, a steroid drug with a list of quite nasty possible side effects as long as my arm. He was very fortunate in that he didn’t really experience any of them, and it was the thing that finally worked.
Life just…moved forward.
We went to class.
We went to bars on Fridays and drank cheap beer.
We helped out at church, took walks around campus, kept counting the days until that degree would be in our hands.
Crohn’s wasn’t his life, it was just this thing that happened to him once.
Then in April of our senior year, he had a major episode – I honestly don’t even know what happened, blood in the stool, pain beyond belief? – and landed himself in a hospital bed for a weekend.
The doctors said it looked like he had a hole in his intestine or would soon and that he needed surgery. Now.
Having intestine taken out of your body three weeks before final exams is not exactly the way one wants to close their college career, and my husband and his family were somehow able to convince the doctors to let him wait until graduation.
That’s how he ended up lying on a gurney in a hospital gown just two days after he walked in cap and gown to receive his diploma, his pain at a “9,” the number you give only because there’s a sliver of a chance that “number 10” pain might exist beyond the blinding feeling in your gut at the moment.
Ten inches of the end of his small intestine had become medical waste, and while everything was stitched back up, it would take five days for his bowels to be kind enough to speak to him again and a long, vertical, worm-like pink scar will forever hurt his chances of being a swimsuit beauty.
That’s Life…Isn’t It?
When readers email me with questions and include the story of a young person’s diagnosis, I always think, “Oh, how awful, how terrible, how do you get through that at such a young age!?”
But my husband was 19-22 when all of this happened.
That is young. That is when people are supposed to be in the prime of their health, having fun, living life without a worry in the world beyond getting to class on time and if the cute girl down the hall will go out dancing with you. (She didn’t at first actually…and then she (I) did, obviously, in case you were wondering!)
Somehow, what really is a tragic health crisis when I write it all down, just became part of the fabric of our lives. It was a big deal…it had to be…but I don’t think it felt monumental at the time and certainly doesn’t in retrospect.
When I was challenged to think about whether our family had a #MyNewNormal story to tell that would fit with the One Small Change theme of the Fall 2014 Ultimate Healthy Living Bundle, I was stumped.
I didn’t think we had a major health transformation. I didn’t think we had a story.
Don’t look now, but I think the length of this post telling our story will beg to differ.
Us at a local sustainable restaurant for our 10th anniversary…
My husband’s Crohn’s Disease has always been sort of a background track to our lives – the music that plays in a scary movie when you’re yelling at the main character, “No, do NOT go into the dark basement alone, you idiot!”
Except that it really plays too faintly to hear much at all over the cacophony of life.
Every so often we pray for our kids to never inherit it.
But not daily.
More seldom still, we pray in gratitude that his Crohn’s has remained mostly at bay for over a decade now with nary a symptom since the surgery.
But most of the time, we forget all about it.
Until we read about someone else battling Crohn’s or colitis and how awful it has made their entire life. How much pain they’re in. How many foods they can’t tolerate. How many daily medicines they’re on.
And then we remember.
Yes, that’s a word in our history too.
A word in our present.
But it’s barely a reality beyond the word, the diagnosis, the knowledge that it’s there, looming, able to kick in and wreak havoc at any second.
You’d think that writing a healthy food blog, the Crohn’s Disease would be a constant topic, practically the thread that sews everything together. But mostly it weaves its way into our story and my posts from time to time, poking in to say hello and then retreating just as quickly.
Every few weeks or months, someone will email or message me asking about Crohn’s, telling a horrific story about their loved one and how bad it’s become or about a new diagnosis, their relief to know what’s been so painful for so long, and their fear of the unknown beyond.
They ask what we do to keep my husband so healthy.
I always feel like I don’t have anything to say.
We’ve just been lucky, I think.
He hardly ever even has a flare up, when after surgery in 2002 we were told it would surely be “back” within 5-7 years and likely result in another surgery by ten years.
We’re at twelve and counting.
He’s not giving himself daily injections.
He doesn’t have pain after eating meals.
He has only had about two months of diarrhea plus an occasional visit from the D-word after a meal to remind us that yes, he does have a chronic disease.
He’s not actually on any medications at all, and he certainly is far from being a candidate for surgery.
And yet I’ve never written our story.
I didn’t think we had one, because #MyNewNormal was just that – normal. It was a part of our lives, simply the way we lived.
But perhaps the way we’ve chosen to live and eat really has made all the difference in the world.
We don’t notice what we’re missing.
And that’s a good thing.
Because There’s More to the Story…
You know men would never go to the doctor on their own volition unless their big toe was hanging off their foot, green and rotting, or they were in so much pain they couldn’t even enjoy watching a baseball game on TV, right?
I’m being unfair to be funny here, but the truth is, in my experience with the men in our family, I think God must have created marriage so that men would have someone to tell them to get their yearly physical.
My dad’s bladder cancer, for example, was beatable in large part because it was caught early, via microscopic blood in his urine at his routine physical. He was in no pain and hadn’t noticed feeling badly at all.
When my husband and I first got married, I encouraged and nudged and cajoled him to get a physical (and made the appointment).
In 2006, then, he finally did the whole rigmarole and got the blood tests done to have his cholesterol checked, yadda yadda yadda.
At age 27, we didn’t really expect anything significant, but my grandmother had been in the hospital for heart surgery and all the grandkids were told to get their numbers run. Since I had to, he had to too!
I still remember getting the test results in the mail.
Doc had circled the triglyceride number – 360 – and scribbled “too high!” next to it, and then the words, “low fat diet” nearby.
That was it.
In case you’re unfamiliar with triglycerides, like we had been blissfully ignorant until that moment, the recommendation is to stay below 150.
His HDL (usually called “good” cholesterol) should have been 50 or above, and it was ringing in at 31.
My husband’s numbers were such that, years later while listening to a talk on cholesterol and diabetes, I would learn that he was a heart attack waiting to happen at age 27, and the doctor gave us 5 words of wisdom. (More on that later in the story.)
He could have lost a patient.
“Please, Doc, Tell us What to Do!”
I called and ask for more information, and for my troubles, I was rewarded with two pamphlets, one piece of paper each, mailed to us.
One detailed what an 1800-calorie “low fat/low cholesterol” diet looked like, the other, a 1500-calorie diet.
This, for my active, 5-foot-eleven, broad shouldered, 200-pound husband.
He stayed under 2200-2500 calories a day for Lent once and was hungry all the time and couldn’t wait for the 40 days to be over. 1500 calories would have seen him wasting away…
It was recommended that he use meat substitutes, “heart healthy” spreads or margarine instead of butter, slash fat from his dairy (we already had been for years), eat no more than two eggs per week, avoid coconut oil like the plague and stick to corn, vegetable and soybean oil, and eat 9 servings of grains a day.
Here’s an example breakfast to start the day off right:
- 1 whole English muffin
- 3/4 c. corn flakes
- 1/2 c. orange juice
- 1 c. skim milk
- 1 tsp. margarine
- coffee , tea, sugar substitute
Gahhhhhhh! So much starch, sugars, no fat…did you know triglycerides form in the blood when there is too much sugar being stored in the body??? To me, this looks like a recipe for high triglycerides, to be honest.
Looking back on the “treatment” we received for deadly heart un-health, I feel like modern medicine has become what school would be if the teachers gave a big exam, handed back the results and said, “Hmmm, you got a D-. That’s not very good. Be sure to work harder to learn more, follow the instructions on this one sheet of paper, and I’ll see you again in 12 months and we’ll see how you do on this test again.”
And the Report Card Says…
Before I tell you what has happened in our household between 2006 and the present, let’s start with the numbers, which are pretty cool:
- Total cholesterol: 169 (doc marked “good”)
- LDL: 96 (also marked “good”)
- HDL: 35
- Triglycerides: 192 (marked “little high”)
- Total cholesterol: 182
- LDL: 80
- HDL: 36
- Triglycerides: 331 (marked “very high – a low carboyhdrate diet will help”)
Tell me the irony is not lost on you that just two years before, the same doctor had recommended a low FAT diet for the exact same problem…
- Total cholesterol: 196 (“good”)
- LDL: 102 (“good”)
- HDL: 50
- Triglycerides: 221 (This number and the number showing that the trigs should be <150 were both circled. How helpful. Thanks, doc.)
- Total cholesterol: 181 (“good”)
- LDL: 91 (“good”)
- HDL: 32 (low – “more exercise!”)
- Triglycerides: 291 (high – “lower carbohydrate diet”)
- Total cholesterol: 169
- LDL: 96
- HDL: 56
- Triglycerides: 83
- Total cholesterol: 200
- LDL: 136
- HDL: 48
- Triglycerides: 79
New doctor, no personal notes whatsoever – the total and LDL cholesterol both got an “H” flag for high, being 1 point and 6 points over the recommendation, respectively. The auto-generated comments say: “The cholesterol/HDL ratio is desirable since it indicates a reduced risk of coronary artery disease.”
One more “report card” we are getting is a Hair Analysis from Lydia of Divine Health From the Inside Out. By testing your hair she can create a report on mineral imbalances or heavy metal levels. Then from there we can find a roadmap for healing. Stay tuned for the results…
What Numbers Even Matter???
Two flags for “high” on that last report, and yet I’m beyond thrilled with it.
Because those numbers do not reflect any research-based risk for death by heart attack.
I have recently read (okay, skimmed) The Great Cholesterol Myth and learned a lot about how statins work, how cholesterol actually works, and what really matters.
I went down that path because I listened to a talk during the Diabetes Summit (now over) by Jonny Bowden, one of the authors of the book. He happens to be a nutritionist with a master’s degree in psychology, but both the interviewer (Dr. Brian Mohl) and his co-author, Dr. Stephen Sinatra, are both cardiologists, so I felt reasonably secure in trusting their information, particularly when it already resonated with our experience and traditional foods.
They talked about cholesterol numbers a lot and how the total cholesterol is not the important one. Study after study shows that while statin drugs DO work quite well to lower total cholesterol, there is ZERO statistical difference in the number of people dying from heart attacks with low, average and high cholesterol.
So lowering your cholesterol will make your doctor happier with your numbers, but it won’t change your risk of death at all.
Here’s what really DOES impact one’s risk of heart attack: the ratio of triglycerides to HDL.
I don’t have the transcript, but I can hear the words in my memory like this:
“If someone has, say, a ratio of 2:1, they’re totally safe. They’re not going to have a heart attack anytime soon. If they get up toward more like 5:1, then you need to start thinking about some lifestyle changes, get that back down a bit. But if you see TEN-TO-ONE, well, then, you’re in big trouble. You’re practically a walking heart attack. That’s a serious problem…”
I did what any curious wife would do, vaguely remembering the old test results and wondering just what the ratios actually were: I pulled all the paperwork from 2006 to the present and started doing some math.
2013 = 2 : 1
There was some jumping around and cheering out loud at this, at midnight. I hope I didn’t bother the neighbors. I was feeling pretty darn good about that.
2012 = <2 : 1
2010 = 9 : 1
2009 = 4.5 : 1
2008 = 9 : 1
2007 = 5.5 : 1
2006 = 11.6 : 1
I wasn’t cheering anymore. It was both gratifying and terrifying to see this math plain as day and watch the current 2:1 gradually shift to the 11:1 of 8 years ago.
A walking heart attack.
His maternal grandfather died quite young of a massive heart attack.
His mom’s brother had a very-nearly-fatal heart attack at age 33, where if an ambulance hadn’t literally been in the nearest parking lot at the moment he pulled off the freeway, just 1-2 minutes away, he would not be here to be the jovial 50-something-year-old that everyone adores as “the cool uncle” today.
And six years ago, his mother was a few percent blockage away from dying of a “widow maker” at age 57. That’s the kind of heart attack you can’t survive even if you’re sitting in the hospital when it happens.
When I said above that his doctor could have lost a patient, with my husband’s numbers as they were at age 27, 29, and even into his 30s with that 9:1 ratio in 2010, I get chills thinking about how quickly that reality could have set in.
I don’t ever want to be the “widow” in “widow-maker.”
But Katie…What Have You Done?
I know, I know, we don’t just want to be a storytelling blog today. I’m sure you’d like to hear what changes we’ve made – since you know he’s on zero medications – to get that 11:1 ratio down to 2:1.
At first, we focused on getting his HDL up. We ate more avocado. We attempted “healthy fats.” We rededicated ourselves to low-fat dairy, and my husband started exercising more.
We were pretty happy with the HDL finally getting up to 50 in 2009…which was when I started this blog. We had switched to whole, raw milk, and we ditched all the trans fats we had left and started eating coconut oil. We pretty much did the opposite of what the doctor ordered in the field of fats, and neither of our weight or cholesterol numbers has gone up because of it.
It was in the fall of 2010, after a summer of eating fun food, that the Crohn’s health crisis reared its ugly head.
My husband experienced two months of daily diarrhea.
Nothing significant showed in a stool test, the prescription anti-diarrheal meds from the doctor made absolutely no change, and he was starting to get miserable – and a little worried. Was this it? Was Crohn’s Disease finally coming out of the background to take over our lives for good?
As God’s providence would have it, Jordan Rubin of The Maker’s Diet was speaking in our area that September, and upon coming home from hearing his story of finally controlling his Crohn’s Disease through diet, I came home and told poor hubby that he was cutting out all grains, legumes and dairy from his diet, effective at breakfast the next day.
He of course wasn’t thrilled with the idea, but he did it.
And the diarrhea went away.
He had better digestive output than he had ever seen in his entire life and memory.
Guess how long that took to work?
Two days of a grain-free diet, and he was better, for all intents and purposes.
I called the doctor’s office, eager to share our success so they could share with other patients…and they didn’t care. Nowadays I would expect that response, but back then I wasn’t yet quite as disenchanted with the medical community as I have become.
Forget the English muffins, skim milk, low-fat everything…forget the doctor’s orders…we flew in the face of almost every nutritional recommendation we were given, and finally, we won.
cutting out soda pop completely (he had been a 2-3 per week sort of guy previously) in February 2012 to the present
cutting grains entirely and then overall decreasing them BIG time
staying away from gluten (which we think is likely a problem, but when he has it occasionally, it doesn’t bother him in the short term)
cutting nearly completely (eating out and organic tortilla chips are the exceptions) soybean oil and corn oil
eating a ton of eggs – up to 4 dozen a week for our family of 5!
sticking with full-fat dairy and LOTS of coconut oil
decreasing sugary desserts, but not 100% by any means
using less refined sugars and no refined flour in our home cooking
vigorous exercise 3-5 times a week, usually – this may or may not be making a huge difference, but it’s part of #MyNewNormal for sure
We pretty much ate traditional, real food, homemade, very little processed stuff, and as much sourced from well-fed animals and well-raised produce as possible (but certainly not 100% organic).
It’s what this blog has always been based on, with the one fine-tuning moment of cutting those grains and gluten. Any recipe you find here, especially from 2011 onward, is going to reflect the habits that have worked for us.
As you can see from the numbers, not only did our real food, low-sweetener, low-grain diet seem to keep Crohn’s Disease symptoms at bay, but it also rocked out his triglycerides number and even improved his HDL.
Now he’s stuck with me for the next 60 years (hopefully more) rather than threatening me with a widow-maker to escape the chaos of a household of four children.
And I sure am thankful.
I Didn’t Even Notice
What’s funny about a New Normal, to be honest, is that you forget how far you’ve come.
We took so many tiny baby steps that all piled up to get us wayyyyyy to the end of the spectrum and far from the mainstream, but it doesn’t feel like we did a drastic change or massive dietary overhaul.
Going grain-free that first time was daunting, and I’m sure at the time it felt like a huge deal and was hard to deal with, but now it’s just…life. I hope that gives you some hope if you’re scared of embarking on an elimination diet. It really does get better.
I was fortunate to be in a blogging community full of resources, recipes, and advice, and that made it all much, much easier.
I had a lot more support than a one-page pamphlet with no recipes and a few “eat this way” words on a test report paper!
And now that we’re so deep into it, my husband has even taken charge of his own health in some big ways. Some of my favorite moments from the last two years:
“Hon, I think I’m done with Burger King. I’m over it. I don’t need to ever go there again…”
He sends me articles about butter being redeemed and trans fats being outlawed, with emails saying, “You’re right again, babe.”
He questions doctors’ opinions all the time now. I’ve made him a skeptic!
This year he finally decided on his own volition to take gluten-free bread on his 5-day camping trip, where he and a dozen friends usually subsist on cured meat, white bread and beer. He came home thrilled, having enjoyed his time much, much more because he didn’t feel like crud the whole time!
I’m glad to finally have a post to share with people when they ask about Crohn’s Disease and what we’ve done, how perhaps, the choices we’ve made have vaulted us into the “lucky” winner’s circle even more than a twist of fate or random chance ever would have.
We’re living the New Normal. We call ourselves a healthy family. And every time the dishes pile up and stress us out or we have a spat because I don’t want to eat out to save our sanity yet risk our health…we need to remember what we’re missing.
I hope we get to keep missing it.
I’d love to hear more about your own real food journey, your quiet baby steps or life-changing 180-degree moments, or field any questions you have! I definitely spent more time telling the story than describing the solution, but really, nearly everything I write here on KS is the solution, one step at a time.
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