April 2012 Health Update
September 2012 Health Update (when things start to turn a corner!)
So I finally had some time to sit and write about the crazy health roller coaster I've been on this past year. I'll warn you that it involves stomach ailments of the worst kind, and I can't imagine anyone other than fellow sufferers and possibly some family members actually caring to read on. But if you love TMI, go for it.
It seems I have a new life partner, and it goes by the name SIBO. SIBO is short for Small Intestinal Bacterial Overgrowth. And it has been hanging out in my body for quite some time now. I will distill the bulk of this down so that I don't have to relive all of the horror that was this summer (and so that you can keep your appetite). But essentially I was starting to have severe stomach issues every few weeks that mimicked the stomach flu (cast your mind). Of course I couldn't function that way at all, so I started seeing a gastroenterologist who ran lots of tests (blood tests, stool tests, more blood tests). I didn't have celiac, IBD was a negative, no parasites, thyroid a-ok, and all my bloodwork was normal. Commence head scratching. I was diagnosed with "leaky gut" (which isn't a diagnosis at all—it's a symptom). And after no relief, I finally opted for the very pricey and extensive blood test to identify my food intolerances (which I knew were significant at this point). That list came back with the following:
• egg whites
• ALL dairy (whimper)
• cinnamon, mace, and turmeric
• pineapple and plums
...and a handful of other oddities
These are all things in my life that I'd eaten happily for years (with some sporadic issues with dairy). So why were they suddenly causing me so much distress? As in "cutting my stomach out with a knife" distress. Removing those items from my diet offered, to my relief, relief. But not total relief. I would still get randomly sick, and have unpredictable symptoms. I learned early on that I could forget about eating out. I've had a few intense experiences with eating out that scared me straight. So I cook. And let me tell you—this diet is a full-time job. I am cooking all the time. All. The. Time. Mostly I eat healthy delicious foods that my kids would rather die than eat (carrots, spinach, zucchini, chicken...a LOT of chicken). And while I feel very grateful for the things I can eat, I miss some foods like crazy. So much that I have to detach myself from my previous life of food-loving. I am not going to even go into the amount of emotional restraint I have to exercise over not being able to eat a shrimp quesadilla at Tia Rosas, a burger with my kids at In-N-Out, or my own birthday cake. But then there are normal things, like cereal in the morning. What to do there? I buy gluten-free everything. I obsess over crumbs on the counter, and heaven forbid I find them in my vegan butter. I use unsweetened almond milk in lieu of milk (50% more calcium!), and flax seeds in place of eggs in baking (weird-o). And for the most part it's fine. But it was starting to worry me, too. How long would this last? Forever? What happens when I want to travel...to someplace like Iceland with my husband?? What happens if I get sick in the middle of hiking a glacier?! Or in Target with two kids with a full shopping cart...the horror. I had to get to the bottom of this.
U.S. News and World Report listed the top gastroenterologists in the nation. And a few were right here in my own backyard! I ditched my first GI doc for the pros at Cedars-Sinai Medical Center (one perk of living in L.A.). After 10 minutes, Dr. Stein diagnosed my illness (something my previous doctor couldn't do in 10 visits): Post-infectious IBS (Irritable Bowel Syndrome). "30 year olds don't get this," I thought. Not so. 30 year olds who travel abroad get this. It seems the little trip I took to Greece over a year ago is the culprit. I got horribly ill with a stomach bug while there (gastroenteritis? food poisoning?). Dr. Stein knew immediately that this was my problem. In his words, "You went to Greece and got screwed. Now it's my job to coach you through this." Then he gave me a handful of options and wanted me to choose for myself after I did the research (upper/lower GI scoping, breath testing, antidepressants, antispasmodics, acupuncture, herbalists, hypnotherapy—the big thing in London). I talked it over with Wes and my family, then asked Dr. Stein's medical opinion. Out of everything, he thought I really needed the Lactulose Breath Test for a thing called SIBO. It seems that after a major infection, bacteria can infest the small intestines, set up camp, and throw a party. I went in for the test. I had to drink a sugary liquid and then breathe into a little bag every 15 minutes for 2 hours. Test POSITIVE. OK—a diagnosis! But where to go from here?? (Hint: don't go to Google unless you want to think you have 4 types of cancer...)
Dr. Stein referred me to a book written by his colleague at Cedars named Mark Pimintel (the physician who actually processed the results of my breath test). He is the definitive source on SIBO. I read the book from cover to cover in a day. I learned a lot. Mostly I learned that tons of people with IBS are walking around with SIBO and don't even know it. For years—decades, even! Their quality of life suffers, and this is something that's treatable. It's even curable in some people! And not only that, but SIBO leads to other conditions like rosacea, acne (ahem, yep), even fibromyalgia. For instance, a study by researchers at Cedars-Sinai examined 202 people who met the diagnostic criteria for irritable bowel syndrome and gave them the test for bacterial overgrowth (called the lactulose hydrogen test). Researchers found that 157 of the 202 people (78%) had bacterial overgrowth. When the unwanted intestinal bacteria were eradicated, symptoms of IBS improved in 48% of the subjects, particularly diarrhea and abdominal pain. It's not just people with IBS-like symptoms that have bacterial overgrowth. Bacterial overgrowth can also present with non-digestive symptoms such as fatigue. It's believed to be involved in chronic fatigue syndrome, fibromyalgia, allergies, arthritis, lupus, autoimmune diseases, diabetes, and many other chronic conditions. Even FOOD SENSITIVITIES.
It seems that bacteria like to bore holes in the small intestines, allowing toxins to leak into the body. So that leaky gut idea from doctor #1? Not all wrong, but again—not a diagnosis. A symptom. And that leaky gut leads to autoimmune responses in the body (like food intolerances). So now we had to treat this problem. I was prescribed a heavy course of antibiotics. But before you freak out and say that antibiotics make stomach issues worse, these antibiotics are not absorbed into the bloodstream. Instead, they stay in the small intestines! Bingo. Neomycin + Rifaxin for 10 days. Only problem? My insurance wouldn't cover the $500 Rifaxan (I won't go into the reasons, but it's a problem with this drug across the board). Luckily I have an amazing doctor who just gave me the medicine because I needed the treatment. After the 10 days, I could feel a difference. I am now not as sensitive and feel more normal. I do have some lingering heartburn and abdominal discomfort, but nothing like before. I do believe some (if not all) of the bacteria has been eradicated. But I also found out that it doesn't end there. The diet now has to be adjusted.
Oh the diet. I cannot have any sugar. Take a moment and read that again. Bacteria thrives on sugar. It wants to have a sugar party in my body. And I cannot stomach that idea (pardon the pun). But because I might lose my mind entirely if I cut out ALL carbs and sugar, the limit is no more than 10g of sugar per day. The only sugar that is ok is glucose (but that isn't a naturally occurring sweetener, so I am at a loss there). Fructose is the worst, so no fruit or fruit juice. And I have to wait 3-5 hours between meals. No snacks (collective groan). If I thought I was getting skinny before, I am probably in for another round of weight loss. I can assure you it is not welcomed at this point—I need to gain about 15 pounds. And if you think "You're lucky—I wish I had that problem" I might slug you (yes, people have told me that to my face). The idea is that once the bacteria is gone (fingers crossed), I have to prevent it from coming back. Then I have to restore the "cleansing waves" that go on in the body after eating (hence the 3-5 hour breaks). Plus there's the issue of liver detox. That's another bottle of supplements to clear out all those leaking toxins and give my liver a break. Tons of water. Lots of veggies. Some meat and protein. A few grains. No sugar. I can do this. I think...
The next step is healing my "leaky gut." I think that is the most unfortunate combo of words in the english language. Who wants to say they have a leaky gut (or small intestinal bacterial overgrowth, for that matter)?! So to heal the lining, I am doing things like taking glutamine powder (proven to help some people who suffer from SIBO), and I plan to do a cabbage juice regimen soon. I drink a lot of tea (ginger, mostly). Probiotics are a big NO when you have SIBO. No bacteria is good bacteria in this case, and I do feel worse when I take probiotics. I've been instructed to stay away from them entirely. In the case of SIBO, many things that would normally seem appropriate in other "living healthy" scenarios do not apply (no probiotics, don't eat frequent smaller meals throughout the day, white rice is your friend—in moderation, etc.). This is its own beast.
* As an update, I had previously posted that I was going to take peppermint oil. It made my heartburn EXTREME. So I nixed that. Apparently, in some people, peppermint oil can actually relax the valve that keeps acid down in your stomach. No go for me.
I try very earnestly to focus on finding joy in the things that I can eat. I am very grateful that I am not intolerant to corn or soy (dairy and wheat are enough to make my head spin). I attempt to walk stoically past the popcorn at the movies (fiber + butter = trouble). And I don't ever want someone to feel guilty when they are eating something yummy in front of me at a restaurant while I sip my water and smile. Most of the time it's fine. Although with the new addition of no sugar or snacks I admit I had a brief moment of hysteria (hunger will do that to you).
I recently read that this is considered a chronic condition. It can be controlled and almost completely eliminated in some people. And I am hoping I am in that percentage. But the truth is that it will most likely be something I live with and treat for a long while—possibly my whole life on some level. My hope is that I can get it to a manageable state so that I can travel and eat out safely. I hope to get my energy up, and rid my body of those toxins that have been building up these past months. I hope that one day I can have another baby (a strict no-no right now). But in the mean time I will keep plugging along. I found this quote a few days ago when I was feeling deflated by all of this:
There will be times when you will be frightened and discouraged. You may feel that you are defeated. The odds of obtaining victory may appear overwhelming. At times you may feel like David trying to fight Goliath. But remember—David did win!
~President Thomas S. Monson, President of the Church of Jesus Christ of Latter-day Saints, "Living the Abundant Life" found here.
A lot has changed in my life. I have almost completely put design and blog work on hold. Any free time is spent creating my meals from scratch (then the kids' meals, since they won't eat what I am eating at their wee stage in life). And a lot of my thoughts are consumed with my health (physical, emotional, mental, spiritual). Stress also triggers symptoms, so I am trying to manage that. I have a plan for exercise that promotes healing and de-stress meditation (if I can find the time, ha). There are a lot of side effects with SIBO. And often when I think I am having a good day, some other malady presents itself. So my serious lack of blogging is due to that. I have debated over just making my blog private and becoming a truly lazy blogger just for my own journal's sake. But I enjoy the community. So I think I will most likely stick around. I also feel strongly that if any of this information can help even one person, than it's worth the extra effort to blog about it. I've provided a list of resources at the end of this post for anyone interested, and please email me at firstname.lastname@example.org if you have any questions.
And please promise me the next time you eat a piece of cheesecake that you won't bemoan the calories, but just enjoy the treat!! :)
My SIBO Resource List
Trust me—I've done a LOT of googling, and have distilled it down for you here:
Cedars-Sinai SIBO page
SIBO—what IS it?
Very comprehensive SIBO site from a GI who subscribes to Dr. Pimintel's research
Great overall article on IBS and SIBO
The case against probiotics and SIBO