In Remission from SIBO… for now

I hesitate to write this post because I don’t want to be eating my words in a day or two if I get a flare and come to the harsh realization that it’s all coming back. Now I think I know why there’s so few success stories for SIBO. Even the people who get better are too afraid to “jinx” it. We all know we’re susceptible to getting it again, so how do you move on and not allow your life to be ruined, to be paralyzed in fear of eating sugar again or that slice of pizza calling to you from the box in the kitchen. It’s been 4 days since I stopped treatment and I haven’t had any symptoms.

I had my follow up appointment with my doctor today (he does phone appointments, so I took advantage of that). I told him how I felt on the antibiotics, and that I’ve been symptom free since the course ended a few days prior. He told me that usually 6 weeks after the treatment is over, people are feeling their best (if it really did work) since the inflammation finally reduces. I was going to ask about retesting, but he addressed that head-on. He didn’t want us to retest since I’m feeling better, which is the goal anyway. He told me the reasoning is, if it isn’t gone, then we’d do another round, which we would do eventually if my symptoms return anyway. I was then instructed to call him if I feel like I’m relapsing, we can test then and treat it again. If I feel OK, I should follow up with him in 6 weeks (late June, early July). Keep taking the Resolor, and actually increase the dose to 1mg (I’m taking 0.5mg right now to titrate up to the full dose–if I experience abdominal cramping, I should continue with 0.5mg). He also reasoned that since I am feeling better, even if there’s still some overgrowth, the prokinetic (Resolor) should help take care of the rest of it. I’ll keep you SIBO warriors posted on how this all goes.  Keep your fingers crossed for me.

In other news, I’m moving this week so I’m living my life out of boxes currently. It’s not my favorite time. Anyone with food sensitivities or SIBO knows that it’s a pain in the ass to move when you have to pack up all your kitchen shit, and yet still cook at home without your normal tools available. I just thank the heavens that I don’t seem to have histamine intolerance, so I was able to meal prep on the weekend as per my usual, and then pack up the majority of my pots, pans, utensils, small appliances, etc. I’m still able to cook up some eggs for breakfast and left out my nonstick pan, so I can also saute veggies. I prepped some very easy meals for this week (taco bowls with cauli-rice, and turkey egg roll in a bowl) so I should be covered. Part of the logistics is of course making sure I’m able to locate my essential cooking utensils quickly once the boxes are at the new place since we plan to cook there from the first day. I haven’t yet ventured into the world of dining out with a million food intolerances and I’m not quite ready to start just yet, especially with SIBO remission as a real possibility. I’m not sure when the fear goes away–fear of food, fear of relapse, and even fear of actually being better and not knowing how long it will last–but I’ll let you guys know.

Actually Healing from SIBO?!

I hate to say it out of fear that it isn’t true, but I think I’m responding to the antibiotics very well. My only concerns are that I haven’t really felt what I would consider a “die-off” reaction, and I haven’t seen any biofilms being passed (but I don’t know that it’s necessary to pass biofilms in your stool to kill the bacteria). Here are my main observations over the last 13 days (tomorrow is the last day of the antibiotics – eeek!):

  1. The bacteria seem to really really love the guar gum. I’m reacting to it within 30 minutes of taking it. The reaction has lessened as the antibiotics course has progressed, though. For anyone looking to supplement their antibiotics with guar partially hydrolyzed guar gum, this is the one I have been using: here
  2. The first day or two, my BMs were excellent. I am normally constipated and only go about 3-4 times a week MAX (also using lots of magnesium citrate supplementation) After a few days of this, the D started. I’m talking lots of D. Probably between 6 to 8 times a day. Luckily, it wasn’t accompanied by any stomach pains or urgency, I just knew that I needed to go based on a fullness feeling and desire to pass gas. I actually didn’t mind this symptom too much because the D wasn’t painful like it was on the Elemental Diet. I also felt better knowing my intestines were being cleansed regularly.
  3. OMG, how did all that gas fit inside my body? Days 4 through 8 were the worst gas-wise. Even days 9 and 10 I had some gas, but probably my normal amount. I’m talking the kind of gas where you feel like you’re pregnant because the gas baby keeps kicking you and shifting. Since I was having D (see above), I couldn’t pass it freely when it did finally feel passable. So I’d run to the toilet, pass a little (along with more D), and literally feel no better because there was just SO MUCH GAS! I don’t think I looked that distended, but I never had much distention with my bloating anyways, more just that fullness-feeling. It was very uncomfortable and distracting, and my work productivity suffered because of it.
  4. Mild headaches, sometimes upon waking and sometimes not until later in the afternoon. Usually my headaches are related to hunger, but these were not. They were a slight nuisance but they would just come and go. I didn’t take any pain relievers for them, honestly because Ibuprofen usually does nothing for me, and my own paranoia about introducing other drugs during the antibiotics course. I don’t want to screw this thing up.
  5. All my symptoms are lessening in severity as the course of antibiotics progresses. The gas is still present, so I don’t think I’ve fully beat SIBO, but I do think I’ve made progress. The volume of gas definitely feels like it could be less. And the fact that I’m not constipated makes me hopeful that my methane may be gone, which is supposed to be the harder type to beat. That may return after the antibiotics though, since diarrhea is a side effect of Neomycin, so stay tuned. I didn’t have much methane to begin with which does make me hopeful about that.

Next steps for me are finishing this course of antibiotics, and immediately following it with Resotran (Resolor), a prokinetic drug that my Doctor prescribed. Hopefully I tolerate it well. Then just 3 days after finishing the antibiotics, I will have my follow-up appointment with my Doctor to discuss any improvements and game plan on whether to keep treating or re-test. I think I am going to push for a retest, even if my symptoms return more fully after the antibiotics. I really need some confirmation that all my efforts are working, so I want to know where I’m at. But then again, I would be super devastated if my numbers haven’t improved or have even worsened. Trying to stay positive. Anyway, here’s to hoping I’m on the path to slaying the SIBO dragon.

It Gets Worse Before it Gets Better–Right?

Oh my goodness. Today marks day 6 of the antibiotics, Rifaximin and Neomycin. I read a lot of accounts of people’s experiences while on the antibiotics, and a lot of people reported feeling lousy throughout, or even worse, having further food sensitivities afterwards. To be completely honest, I disregarded all the warnings (not to say these people weren’t suffering, but that I didn’t think it would happen to me). I am someone who is not at all sensitive to medication. I’m not sure if it’s related to the SIBO, but long before my gut problems began, I would diligently take my 2 200mg ibuprofen for a headache, only to get no relief. When I had my wisdom teeth removed, I awoke feeling extremely nauseous, but I was told that part of the problem is that it took a little more anesthesia than they thought would be necessary for someone my size in order to keep me knocked out. I’ve never really experienced the drowsiness or run-down feeling of being on medicine. Another time, I went to the E.R. with a severe migraine that had also caused vomiting (luckily I don’t get these often anymore). After being administered Morphine, I still didn’t feel relief. Then they added Motrin to bring the swelling in my head down, and finally I felt better. So as you all can tell, I am not easily affected by medicine or supplements.

This Rifaximin and Neomycin is on a whole other level though. First few days were fine. I’ve been supplementing with Partially Hydrolyzed Guar Gum (PHGG) to feed the bacteria, as I read in a study that it makes the Rifaximin more effective than not taking the PHGG. PHGG is a prebiotic, and is full of fiber, whereas my typical diet is pretty low in fiber since switching to the Fast Tract Diet (I get around 10g of fiber per day, though some days it may be as high as 15g). Anyway, at first I was having great bowel movements, which I attributed to both the Rifaximin/Neomycin and the PHGG. I’m still supplementing with Magnesium Citrate at night too, so the consistency was good and I was feeling regular, which was so great. Now, the last 2 days, my gas activity has been out of control. My main SIBO symptom is trapped gas, but this is so much more extreme than my normal. The gas feels like it’s moving a ton–it honestly feels like I’m pregnant (though I’ve never been, so I can’t say for sure) and the baby keeps moving and kicking me in the guts. It’s not painful but it’s very uncomfortable and distracting. But here’s the worst part: the last 2 days have also been accompanied by extremely loose stools. I would classify them as diarrhea, but without the extreme urgency or stomach pain. Last night, while lying in bed trying to fall asleep, I felt the gas move so I went to push it out, but then I realized I couldn’t trust it. So it’s extremely frustrating! I think I’ll be stuck with this “full of air” feeling in between each trip to the bathroom, so I’m suffering through it.

Other than that, it feels like all food has been causing a reaction. I can’t be sure if it’s from the PHGG since I’m taking that about 20 minutes prior to meals, but I think it is. I’ve kept my diet exactly the same as before except with the PHGG addition. I’m really trying to look at this optimistically though–I’m not even halfway through the course, so there’s still lots of bacteria that can be killed from this first course. Also, I’ve had a mild headache the last few days which may be attributed to die-off, but I can’t be certain. Finally, maybe the die-off is because the methane guys are dying and now I’m switching to SIBO-D? I had a theory that I would switch to D type after the methanogens die, and my methane only peaked at around 12ppm so theoretically, I should be able to get rid of those fairly quickly (and might have already made progress on that between both courses of herbals and the Elemental Diet).

Overall, despite the way I’ve been feeling, the Rifaximin + Neomycin is still worlds easier than the Elemental Diet. I just want to get myself to a point where I can manage my symptoms more than 80% of the time. I want to be in a place where I have more good days than bad days, which I’m starting to get there (maybe 3 flare ups in a week is my normal now). I know it’s a debated topic, but I hope that full recovery is possible for me. I don’t care to go back to eating a standard American processed-food diet, but it would be nice to be able to go out to eat at a hole in the wall in San Francisco on occasion and not fear the consequence. I hope I can look back on all this one day as a distant memory.