Lucky, this point in time and space

So a year ago I wrote a post detailing a few goals for myself in 2011, and the first one was "focus on my health." Specifically, I wanted to try to get my IBS under control.

I actually achieved this goal, but for whatever reason I never really wrote about it while it was happening. I thought it might do some good to explain how I found a solution, because occasionally people show up to this blog after googling "IBS." One of the most frustrating things about suffering from IBS is that so little is known about it, and so many doctors have no idea what to do about it. It's easy to feel hopeless and lost in your own little world of pain and shame.

In January, I was probably at a six out of ten in terms of controlling my IBS symptoms. I'd had a great deal of success with The IBS diet, something that I discovered on my own and that no doctor I've yet met has ever heard of. This just goes to show you how little attention IBS merits in the medical community compared to other chronic conditions. Anyway, I'd been on the diet since 2008, and it made a huge difference in my quality of life - I went from experiencing terrible pain almost every day to having it maybe 3 or 4 times a month. Big improvement. But still not enough. For one thing, the diet is complicated, and I found that I could not stray from it even a little, which made for some problems when I had little control over what I ate - for instance, at Greenwood in summer 2010, even with its vegan options, just about every meal I would have to eat something that didn't jibe with my system. The result was predictable - pain, lots of it, and urgency, and frequency, just about every day, miserable mornings, and terrible anxiety. My first year at Interlochen, eating Stone cafeteria meals all the time, was the same. Although I was fortunately able to move into an apartment with my own kitchen the second year, it wasn't perfect, and I was definitely having huge anxiety problems on top of the monthly flare-ups. At my lowest point, I was afraid to go anywhere for fear that I might have a flare-up. Something needed to change.

I started by talking to my primary care doctor in Michigan, Kari Young. What I love about Dr. Young is that she immediately accepted that I knew more about my personal situation than she did. Instead of telling me to try things I already knew wouldn't work ("Eat more fiber!"), she asked me what I wanted to do. I came in with two requests - I wanted to start taking Paxil for my anxiety (which I took back in high school for a number of years to get my OCD under control), and I wanted a referral to a gastroenterologist. She did both of those things for me in one appointment. Not all doctors do this, unfortunately, so I would say to anyone who has an unhelpful doctor - try someone else. Keep looking.

In February I had my first appointment with Dr. Rex Antinozzi, a gastroenterologist. I have to be honest, the reason I put off seeing a GI doctor for so long was that I was afraid I was going to have to get a colonoscopy, since that's usually a requirement to be officially diagnosed with IBS. God bless Dr. Antinozzi. He listened to me explain my history and said that, given the consistency of my symptoms over many years and the absence of any indicators of an auto-immune disorder like Crohn's, he felt safe going with the diagnosis of IBS without doing further tests unless my symptoms changed.

He did order some bloodwork, but the only test he wanted to do was a hydrogen breath test. This was a test to see if I had an overabundance of bacteria in my small intestine. As I understand it, the theory is that many IBS patients have too much bacteria in their small bowel because of their mobility problems. No one really knows what causes IBS - some think it is an oversensitivity to pain in the colon, others think it is a problem in the wiring of the brain/gut connection, and others think that at its heart IBS is a mobility problem - your digestive system moves too fast or slow, or just irregularly. One result of this irregular motion is bacteria building up where it shouldn't, thus causing the pain and diarrhea.

Anyway, I went in one morning in March after fasting for 12 hours and took this weird test. I had to drink a little cupful of lactose/sucrose and then sit there for four hours with a timer. Every twenty minutes I would breathe into a little bag. I think there were fourteen bags altogether. They just left me alone with the bags and the timer. I watched TV and thought about how hungry I was. A whole lot easier than a colonoscopy, on the whole. Later they would measure the hydrogen levels in the bags to see if I (or rather, my bacteria) was breaking down the lactose/sucrose faster than normal.

Because every single other medical test I've ever had (including said bloodwork) has always been normal, I assumed this would be the same, so I was surprised when the nurse from his office called and told me that my results indicated that I did have an overgrowth of bacteria. Dr. Antinozzi started me on a two week course of two different antibiotics - Keflex and Flagyl. All told I was going to take seven pills a day for two weeks. I have never taken so many high-dose antibiotics at one time, and I was super-nervous because I knew it would probably wipe out all the bacteria, even the good bacteria, and could potentially make me feel a whole lot worse before it got better. Dr. Antinozzi also recommended that I try taking one capsule of Imodium Advanced (the kind with both loperamide and simethicone) every morning and one before I went to bed, since I told him I'd had good results with this particular drug in the past. 

I was really lucky - I had almost no side effects from all the antibiotics. I noticed a HUGE difference within a month. I even cut back from two IMO capsules a day to just one in the morning. By summer, I felt like a totally different person. I think I had one bad day the entire summer. I don't know if it was the Paxil, the antibiotics, or the daily dose of imodium - probably all three. But I can honestly say that I've had virtually no problems since then. I still take Paxil and imodium every day, but that's it. I've even discovered in the last few months that I can stray from my diet sometimes without ill effects - I can even drink coffee again! I've been drinking it almost every day for the past three months with no problem. It's amazing.

So I got lucky on several counts, most notably that I got doctors who listened on the first try, and that I had great health insurance (which sadly I no longer have). There are a ton of people suffering out there who have neither. But that doesn't mean there isn't any hope. Ultimately, with IBS I think the most effective solutions are in the patient's hands. So many doctors - especially primary care docs, who have a wide umbrella of things to treat - just don't keep up with IBS research. My primary care doc, great though she was, had never heard of a hydrogen breath test. Not even my gastroenterologist had heard of this diet that has worked so well for me. And had I not done a lot of reading and research about IBS, I would not have known what to ask my doctor in the first place.

If you have health insurance - talk to your doctor. Find a GI doctor. If they don't listen to you, try another. Be the annoying patient who brings in print-outs of things on the web. Come with ideas and questions. Take charge of your health, because in my experience few doctors will do it for you.

If you don't have the means to see a specialist, I would still urge you to educate yourself. Helpforibs.com is a great place to start - even if this diet doesn't help you, there is a TON of information on the site and lots of things you can try. Peppermint oil capsules, for instance, didn't do much for me, but some people swear by them. Same with soluble fiber supplements. There are IBS groups and message boards all over the internet - another good one is ibsgroup.org. Talk to other people, listen to their suggestions and experiences. It's a cliche, but a long time ago when I had just started this journey to fix my wayward bowels, knowing that I wasn't alone in my suffering was a hugely important moment.

Anyway, that was my long ramble about IBS, but it felt important to share. In fact, thinking of my other goals for 2011, this was about the only one that I achieved completely. Figures that it had to do with poop, right?