It’s been a bit since I wrote a post on my progress. It’s sort of one of those situations where no news is literally just no news. Do any of you sometimes feel like a broken record with talking about SIBO with friends and family? Where it consumes at least half of your waking thoughts? You dream about different treatments and them actually working. You start surrounding yourself with other SIBO friends in far away places just because you know they are someone you can talk to who understands at least a little bit what you’re actually going through. I feel so bad for my family, boyfriend, and friends that they have to put up with listening to me talk about this diagnosis constantly, what it means for me, my limitations, what the prognosis is. I’m tired of talking about it too, but I’m obsessed. Obsessed with finding out more information, of finding relief for myself.
Man, I’m getting really burnt out from it, and I feel so weak admitting that because I know many of you have been suffering with this “diagnosis” for years and I’ve only just been diagnosed since December 2016. I started seeking out treatment for my digestive issues in May of 2016. I had problems for a few years before that, so all told I’ve probably had SIBO for about 3 to 4 years, and I’ve been actively treating it since February of 2017 (so only about 3-4 months). I just feel like the more information I’ve learned, and especially information shared at the SIBO Symposium this year, the more I have come to terms that there honestly probably isn’t a good solution for most of us yet.
It seems like almost all SIBO patients fall into one of two categories (or sometimes even both): Autoimmune Type (usually presents as SIBO-D) or Methane Type (which we just learned isn’t even technically SIBO, but rather “Bloom”, which we historically have referred to as SIBO-C). For the Autoimmune people, my understanding is that there aren’t any treatments currently being used to prevent the autoimmune response to the Vinculin (the exception would be people working directly with Dr. Pimentel–I believe he is trying a few experimental approaches, but I don’t have information on how successful they have been thus far). The Autoimmune Type usually is responsive to Rifaximin, and patients can expect relief for about 6 months before the relapse ultimately occurs. For Methane producers, we’ve been prescribed Rifaximin and Neomycin, which we’re told is pretty effective–but even if we’re able to get that Methane down (below 3 ppm is Dr. P’s gold standard), we usually don’t have lasting results at all (less than the 6 months seen in Rifaximin). We can’t keep taking a dual course of antibiotics every month, so it isn’t a good solution. And for some of us, if you’re like me, it didn’t provide any lasting relief (less than 1 week) after 2 consecutive rounds. So we have to wait on this new statin drug that’s supposed to interrupt the process by which Archaea make Methane, thus pickling the Hydrogen producers and getting rid of the overgrowth. But that’s at least a few years away, so what do we do in the meantime? Well, at least they are working on it… I hate to imagine my life had I been diagnosed at some point in the 90s, well before any of these treatments. I would’ve been told it was IBS, stress related, sent on my way.
All this being said, I’m doing another round of herbs soon under the guidance of my Dietitian. We just started working together but I really like her so far. I’m transitioning to the SCD + Low FODMAP diet, but totally enjoying adding a little more carbohydrates (in the form of some starchy veggies like butternut squash and fresh fruits). The round of herbs will include Atrantil, which I have been interested in for a few weeks now since it seems to work in a similar way to the statin’s method, rather than a “kill” approach. I’m hopeful that it may work for me, at least for symptom management. But I think after this, I may be done for awhile. My wallet certainly can’t keep up with the expenditures of being consistently on some kind of treatment–I’m pretty much breaking even each month after rent, treatments, food. I’m doing better, though. I’ve been successfully introducing some FODMAPs in moderate portions (2 TB of cooked onions, for example) without any negative effects. I think the mind/gut connection is very strong for me, and I’ve been less stressed lately so my body is recovering from flare ups faster than it normally would, and foods that I thought would trigger a response previously are going down OK. So I think after this, if it doesn’t work at all, I might just keep on with the diet, and stop all the supplements. Not because I’m giving up, but because sometimes I think the healthiest thing for us is to step back, take a break, let the body heal a bit, and then press on. No, the SIBO isn’t going to walk away on its own, but I’m only 24. I need to reclaim some of my social life. I haven’t been a good friend, daughter, or girlfriend since focusing on treatments. I’ve been selfish because I allowed myself to be selfish in the name of healing, but I can only be selfish for so long. Those are just my thoughts at the moment.