One of the most embarrassing things to ever happen to me occurred when I was about 16 (surprise, surprise!) Although I didn’t have SIBO way back then I did have some intermittent IBS that came and went until years later when I started eating vegan. It was a party of some sort at my boyfriend’s house and I had eaten a lot of junk food and I started having stomach cramps. I went to the bathroom and that’s where the trouble really started. In addition to spasmy, crampy pain, I started to feel like I was going to throw up. I sat there on the toilet, having terrible diarrhea and getting more and more nauseous. I got hotter and sweatier and I started feeling like someone had dropped me into the bottom of a giant metal cup; all my hearing got tinny and thin. The next thing I know I was on the floor, and my boyfriend’s mom, head of Cardiology at a local hospital, was kneeling overtop of me. I had lost consciousness while on the toilet! She checked me out and I was fine. Cramps and nausea and everything else were gone. I cleaned myself up and that’s all I remember – I most likely lay down and went to sleep if I didn’t run back home out of embarrassment!

My sister took me to the doctor a few weeks later. (This would seem to be pretty par for the course for most folks, but actually going to the doctor when something weird happened to me would not be a theme in my life for the next decade or so.) He asked a few questions about what happened and although my boyfriend’s mom didn’t accompany us, she told us what to say. He did a few routine checks, found I had low blood pressure, and therefore pronounced me subject to vasovagal episodes, and bid us good day.

And it has happened to me ever since. Not a lot, but a couple of times a year most every year. And these past few years it has happened a few more times than that. In my life I’ve woken up on the bathroom floor more times than I’d like to remember (I used to think I had just lain down;) most usually on the bathmat, occasionally in the bathtub (with a bruised head to follow,) and once with my husband kneeling over me the same way my high school boyfriend’s mom did. “Oh I never told you I passed out?” I asked sheepishly…

To date in 2009 I’ve had 3 vasovagal episodes; 2 of them have occurred this week. Back in March I had the pleasure of passing out in front of a doctor; this meant I woke up to pure oxygen, which was quite pleasant! Both times this week when they occurred I managed to avoid full-blown syncope; the first episode was rather mild, but the second time was a bit traumatic. By now I’ve learned to just lie down on the floor when I feel it coming. But I was in the ladies’ room at work so I had to stay put on the toilet. And the prodome to losing consciousness just wouldn’t end. The nausea was terrible and I nearly completely lost my hearing. And something happened which I’ve never noticed before – I shook for about 15 seconds at one point, nearly falling off the toilet. I was worried that I was having a seizure but I was still awake. I asked my husband about the convulsing later, since he was actually present during the episode in the spring, and he said that I shook a bit before I collapsed then too.

I think the worst thing ever about my vasovagal episodes, besides the nausea, because I really can’t stand that part, is that they happen on the toilet. I don’t know what a blog about bowel disease would be without lots and lots of frank discussion of bowels. And years of blog posts, forum posts and doctor’s visits have definitely desensitized me to the topic. But before the SIBO, I wasn’t known as someone with a particular penchant for potty humor or conversation. I don’t really like to talk about going to the bathroom, I definitely don’t like to tell funny stories about the bathroom, and I have even shunned a good morning or goodbye kiss or two when just standing in the bathroom as I much prefer the sterility of the hallway. Yet here is where I like to pass out. Not fair.

It gets better. If you follow the link to the wiki entry on vasovagal episodes, you’ll see that what I have is actually even named after going to the bathroom – defecation syncope. That’s right. So, years of feeling awkward as a teenager/early twenty-something don’t get made up for here. Because I faint – how feminine of me, but I faint on the toilet. Awkward indeed! This is no gender-role-validating, subservient Victorian frail act, oh no, but rather something vile that I do behind a closed door. Turns out I would have to wait for several more years to come down with a condition with the word ‘intestinal’ in it before I would be made to feel girly by my own malaises*.

Of course, like many conditions from which I suffer, lots of ideas (but not all) about vasovagal syncopes center around the psychological aspect, and assume that triggers are triggering for emotional reasons, not necessarily physical ones, or at least that there is some emotion mixed in there somewhere. I do also pass out when I see my own blood. This keeps me from giving blood and when I get tattooed or have blood drawn for labs its essential that I don’t look at what’s happening to me. But just like defecation, I don’t have any particular emotional reaction to blood. This is probably hard for some people to understand, especially as they watch me go under, but I’m not squeamish. In fact, I used to be a big fan of gory movies. I don’t fear needles or bleeding. I don’t mind blood at all. Just like I don’t particularly like or dislike going to the bathroom anymore or any less than anyone else. But I cannot give blood or plasma and when I get a tattoo I have to make decisions about colors before we begin, and I have to trust the artist implicitly.

Here’s hoping to a relatively calm rest of the year…I’d like to end on no more than three!

*Sarcasm!

Something strange is going on with the blog; it looks as if everything past October is gone. This is probably only a temporary snafu, but I was thinking of posting anyway, so this update will serve as a test and a real post I suppose.

Yesterday I had flu-like symptoms, and when I took my temperature, it ranged from 95.5 – 96.5 F. Today my temperature is higher but not feverish, but I am home sick all the same, coughing and sneezing and sweating and as an added bonus I have menstrual cramps. Yesterday, in my non-feverish yet totally flu-like haze, I bought an Atkins bar. The small amounts of malitol and sucralose did not bother me as they have in the past. However, chocolate is not allowed on the low-histamine diet. The mistake caused me to consider throwing in the towel on the low-histamine diet, which has not brought about any changes. It had only been three days, but the person in the Yahoo group felt great after 3 days and began to add in the allowed carbs. I kept up the show, however, and just skipped out on food for the rest of the  work day, not being too hungry anyway. I came home and had a few ounces of lamb and a half cup of homemade mashed potatoes for dinner. I also ate a small amount of peanut butter and ricotta cheese and pecans. I was so bloated and miserable all night.  Today I started my period so whos to say what is and isn’t making me ill, between the flu and that.

This blog gets a lot more traffic when I’m feeling well. Of course people want to know how to be cured and how to feel better. I really want to know that. I’m tired of the things I want to be doing falling just out of reach. I’m tired of being someone who makes an effort to be healthy but keeps falling ill. With little colds, feeling flu-ish, etc. I have finally banished the migratory musculoskeletal pains, “bone pain” as I used to call it, and I think this is thanks to mega-dosing with Vitamin D. I’m super grateful that they are gone; the pain was really debilitating at times. But I am still dealing with the bloating and distention, the abdominal cramping, the weight gain, the sneezing and runny noses, and now dizziness and achiness. I am going to see a new doctor towards the end of the month. We have to wait until then because he is outside the union healthcare system, which means I will have to pay out of pocket. He is a holistic doctor, and some of his patient testimonials talk about how he helped people fix their subclinical thyroid and yeast issues. I have held some pretty firm anti-candida views in the past. However, at this point I’m fairly willing to believe that if bacteria can overgrow, then yeast can too. And I’m nearly positive that my thyroid is busted. Test results be damned. So I’m hopeful.

Thanks to some enlightened and well-researched yahoo group members, and their forward-thinking doctors, a few of us are geared up to try a completely new dietary approach at managing our SIBO – a low-histamine diet. We’re still gaining clarity on the connection between histamine and small intestinal bacterial overgrowth, so a review of the relevant lit is yet to come. In the meantime, you can do a cursory google search and see that the Rosacea community is ahead of the SIBO community in making this connection.

In the wake of Thanksgiving and yet another unsuccessful Xifaxan course, I had to throw something up on the blog about getting ready to trial this diet. I’ve had this entry up all day long; its been lingering in the background behind my work and research. It has actually been that difficult to think of the right words. This is only partially because of brain fog. And it’s a slow day at the office. Mostly it is hard to know just what to say about the duality of emotions that I’m having about this new approach.

I’ve been reading about food chemical intolerance since I’ve been sick, especially this site, of course, and I just never thought it could apply to me. Bloating and distention are so vague. But time has crept up on me has it not? I’ve had SIBO for 3 years now. I don’t just get bloated and distended. I have migratory myalgia. I have sleep disturbances. I am crazy tired. I have a low body temperature. I get brain fogged and confused and angry and weepy and terrified and anxious and I obsess on my own death. I didn’t just struggle to lose 35 lbs over the course of two slow agonizing years, I gained 2/3 of the weight back overnight after I bought the Nourishing Traditions book and made my own kefir and bone broths at home. I’m freaking out and the quality of my life is going down and the Xifaxan isn’t working the way it used to.

I thought being sensitive to food chemicals would make me special, and I haven’t, through the three years of shitty doctor visits and normal lab results, felt that I deserved to feel special. So I have yet to go down the food chemical path. Until now.

Will this lead to a more exhaustive investigation? We’ll see – this is really new territory for me and my diet is super histamine-y. I am tempted to jump into FAILSAFE but I think I should take things easy and first get used to a life without cheese. Cry.

Does this picture make me tear up (and sob uncontrollably) because

A) I grew up without a mother, who died when I was 10?

B) I’m afraid I’ll never have a child of my own? This used to be totally okay; I even went through the trouble of falling in love with a man who also didn’t want to have kids. I think if I were experiencing anything like what most women go through with their biological clocks I might have died by now, but mine’s ticking a little – I swear I can hear it under a pile of new wave CDs, my undying love for my cats, about 12 months of backlogged student loan payments, several layers of guilt about not being productive enough at work, a few screenplays I never wrote or produced, and that decision I have to make aboutwhat I’m going to wear this weekend to that party that I love.

C) I’m on my 6th round of Xifaxan and they always make me feel a little crazy?

OK Here are my symptoms: Slight irritability. A light feeling of sadness and despair. Light bloating and crampiness.

That’s it. Seriously.

And here’s my theory. Kefir ruined my life. This happened because the housekeeper wave is screwed, and has been since the spring of 2006, if not before. Kefir grains may be full of beneficial bacteria but they tend to deposit all the good stuff in all the wrong places for me. Hence, the last course I took of Xifaxan wasn’t able to help me as much as it normally does. Not because it wasn’t working, but rather because it was working so intensely hard. It was trying to get to the normal bad guys colonizing my small intestine, but it got really busy killing off an entirely new population of friendlies, kefir-y goodness friendlies, meant for my colon, which had taken up residence in my small bowel. This is why I had a CRAZY Herxheimer, which included severe body aches, depression, bloating and distention, headaches, diarrhea, and just loads and loads of misery. But it was all worth it because I got better, right?

WRONG! I pretty much felt only slightly better than before. Which is why I am taking a sixth course. I hold out hope that this time I truly did just need more Xifaxan to completely wipe out the unusually large (even by my dense standards) microbial zoo living in my short gut.

Good things that are happening – I’ve lost a few pounds, finally. I am slightly less tired than before and able to work out (which is why the weight is coming off – god bless you low carb enthusiasts like Taubes but if I don’t move I don’t lose) and I don’t want to spend my entire life under the covers, just some of it.

More to come.

Comments, suggestions?

Thank you, ibsgroup.org for the link to this Swedish study on fermented milk. I find the results to be a stunningly accurate reflection of what usually happens when someone starts drinking kefir or eating strong probiotic yogurt – they feel a little bit better right away, and then a few weeks later, all the benefits fade.

The effects of probiotic bacteria in IBS remain controversial….We could not detect a clearly positive effect of a fermented milk containing three probiotic bacteria on GI symptoms in IBS patients compared to the control treatment. However, a trend towards a more favorable effect during the first weeks was seen in the active group.

Its sheer speculation on my part at this point, but I’m leaning towards fermented dairy, particularly my short-lived obsession with kefir, as the culprit in this latest bout of misery that I’m experiencing. There are many things we don’t know about SIBO, but we do know that we suffer because we end up with gut bacteria in the wrong place. Regardless of what the entire cannon of altie dysbiosis literature has to say about the zoo within our digestive tracts, people with SIBO have large intestinal bacteria in our small intestine, and whether its “good” bacteria or “bad” bacteria is really irrelevant. Until we know more about the mechanics of why we end up with this locational snafu, its probably not the best idea for SIBO’ers to go putting bacteria down our gullets.

If you find that confusing, then its probably because the last time you were at my apartment/on my facebook page/having a conversation with me, I was obsessed with fermented milk, but we have to move on when things don’t work. Its still a mystery why I’m feeling so god awful lately, and there are probably several factors, Neomycin possibly being one of them. But I killed my kefir grains all the same.

A quick post to update…I finished up the Xifaxan on Monday. I have been taking Erythromycin at night before bed per Dr. Pimentel’s June 2009 study in Gastroenterology & Hepatology. My pharmacy only had 250 mg tablets, not the suspension of 50 mg specified in the study. There was an afternoon of discussion in the Yahoo group over dosage/tablet cutting, etc. and whether or not it would be safe or effective to take the Erythromycin in this way. Frustrated, I wrote to Dr. Pimentel to ask his take; he wrote back right away and said cutting the tablets in quarters should be just fine. (I had the wrong address before!)

I’m not feeling god awful anymore but it is really too early to tell what I’m feeling. I get really atypical results with the Xifaxan; feeling pretty crappy while I’m on it, then getting great relief but not in the same manner/timeframe as others I see posting about their experiences on ibsgroup and other places. Except for the course I took in August, which really knocked my socks off, and which the effects of dissipated nearly as rapidly as they came, I usually need a lot of time and strict diet after the course to feel really well. So not feeling so amazing right now is not really important, but not feeling terrible is a pretty good sign. I’m still eating Atkins, and dutifully taking the Erythromycin at night. I’m trying to stick to three or four meals a day, and not take snacks, so that the cleansing wave of the small intestine has time to do its thing. I’m still not taking probiotics in any form (I hope I didn’t confuse anyone when I mentioned my “kefir/yogurt fast” in the last post – I meant I was fasting FROM these foods.) I took a closer look at the digestive enzymes I’d been taking and they had 3 strains of “beneficial bacteria.” Luckily I had stopped those during the Xifaxan (mostly out of laziness!) I’m picking up some ox bile today and I will use that along with the HCl with meals.

I had a conversation with a friend last night who is studying nutrition about vitamin D. I had no idea but she had also been having the odd, migratory, musculo-skeletal, or “bony” pain that I have been suffering from. She had also experienced cramping and curling of the hands and fingers. This is something I experienced back in 2007/2008 whenever I would finish my workouts, but it would happen in my toes and feet. She was diagnosed with severe vitamin D deficiency this year and says that months of supplementation have nearly turned her life around. I’d already started supplementing only this week but I think I need to up my dosage a bit. I’m also looking into Calcium D-Glucarate. I could really use a good education in micronutrition. I tend to find vitamins and minerals about as confusing as digestive enzymes. Really, I suppose the only thing I do know a lot about is antibiotics. This is actually a great realization to have; one which makes me very happy. I stated in a recent post here that I was growing really uncomfortable with the amount of information I had collected and the amount of knowledge I had amassed about SIBO, since I seemed to be one of the only ones I was coming into contact with who had put in the hours doing the research. Lately however some of the discussions in the yahoo group are incredibly enlightening for me and I no longer feel like a walking encyclopedia of SIBO info. Because I long for knowledge and lately I’ve been able to gain so much, I feel I’ve become more open to some of the knowledge and information that has been out there all along that I may have glossed over or considered irrelevant for one reason or another. Which is a great thing really. It’s very nice to have one’s eyes opened. And I will update when I know more about how things are working for me.

1600 mg/day for 7 days. Each script for this stuff is a plane ticket to an exotic location I’m afraid I’ll never see.  Back on the ketogenic diet too.

Definitely at a low point. Feeling sick – bloating, body aches, brain fog. Spending a lot of time alone as I don’t feel well enough to go out as much as normal and my husband is working on a campaign. The weight is out of control. My body is still doing bizarre things and I get scared that I will never have a streak of good weeks/months again.

I’ve internet stalked some folks who I thought might have some good insight for the blog and the yahoo group and I’ve been ignored. I can’t blame them because its odd to be contacted privately and out of the blue but I would never turn someone down who asked for information like that. I wrote to Dr. Pimental with some questions on recurrance and I haven’t heard back; no surprise there. I’ve contacted some RDs in the area and what I’m hearing back about their knowledge of SIBO isn’t good news. Internet research turns up a lot of the same old forum posts/journal articles and even more dishearteningly, my own writings.

Then again, some things are going well. We have a new member in the Yahoo group and some enlightening discussions have been sparked. We’re possibly on the prowl for a doctor type that would hang out online and serve in an advisory capacity. I also managed to turn up a new-ish piece of research…for the second time. Its funny how bad brain fog can be. I posted the latest work of Dr. Pimentel (from June of this year) to the group back in August. Which means I obviously read it myself. However, it was all new to me when I reread it and found that he’s now recommending 50 mg of Erythromycin in a pediatric suspension as maintenance after antibiotic treatment for SIBO. Due to its pro-kinetic properties, E-mycin extended the time between symptom recurrence from 50 to 146 days. So I faxed the report to my doctor and I’ll be taking E-mycin after the Xifaxan.

And due to some of these enlightening discussions I just mentioned…I’m going to continue this yogurt/kefir fast. Its scary but after a gazillion recurrances with mere weeks in between, it cannot hurt.

I’ve taken enzymes off and on. I’m pretty sure that in theory, judging the effectiveness of digestive enzymes is at least a little less subjective than talking about which probiotics work. Even though we all have different bodies and different needs, I am fairly sure that some digestive enzymes just suck, and others are probably pretty good.

That being said, however, I feel even more “in the woods,” so to speak, when it comes to shopping for enzymes. I’ve probably done about zero research on them, and although I have tried a few brands here and there, I couldn’t say that any of them made an appreciable difference in my digestion. I haven’t taken any enzymes in a really long while, not because I don’t think I could benefit from them, but because I just haven’t known which ones to buy. Shopping for them seems kind of…well, like a crapshoot.

So I took a chance and went enzyme-shopping. I ended up with Ultra-Zyme by Nature’s Plus.  It has ox bile in it, which I suppose I should be taking anyway since that I no longer have a gall bladder. They smell terrible and I am supposed to take them twice a day, rather than just with a meal.

I’m continuing with the oregano oil and I’ve added HCl back into the routine. I’ll update with any major changes. In the meantime, if anyone has anything to say about digestive enzymes, I’m all ears.

Thank god.

If I thought for a second that the cupcake thing was really over I’d jump for joy but here in NYC I don’t think cupcake shops and parties are going anywhere. My friend Grace has the best quote ever about cupcakes: “what happened to eating a slice of cake on a plate with a fork like a civilized adult.” I say what happened to eating breakfast foods throughout the day, pretending we’re all weekend warriors on eternal sabbaticals, living out the everlasting brunch?

I have to admit that while I’m familiar with the GDPA’s work, I don’t frequent their site nearly often enough. Which is why I just found out about their Fall Patient Information Session, taking place this Saturday, October 3 at 10:00AM. The event is free and if you’re in Calgary this weekend you shouldn’t miss it. I’m nowhere close in NYC.  Here’s a more detailed flyer.  The transcripts from last year’s public forum are on the site too.