I've been putting this off. I feel like I've been doing really well mentally/emotionally with my health issues. And writing about them only makes me dwell on any issues I am still having. But I have received so many emails from people in a similar (or worse) situation than mine. And I do feel like it's time to answer their questions, and let people know how I am carrying on.
If you would like to read my previous post on SIBO, you can find it HERE (there are clarifications/corrections I will make from that previous post, so if you are here researching SIBO, you'll want to read this post, as well).
So I was in my doctor's office the other day (the wonderful Dr. Stein of Cedars-Sinai GI Motility Program), and he said, "Are you the one who blogged about me?" What? Well, yeah, that was most likely me. I tend to do that—blog about things. :) And it turned out it was me. Someone had read that post and contacted Dr. Stein to see him about her own issues with SIBO. I was momentarily a bit intimidated that my doctor had perused my personal blog, but he said he liked the post, and it was well-written and informative. High-five. (OK, I didn't really high five him...) But after our conversation this month, I realized I needed to amend that first post. Let's start with food.
To read the full post, click on the link below that says "read more"
Dr. Stein explained that all of the restrictive food intolerances may not all be completely accurate. At least not all of the time. I had the IgG blood test done to see what foods I was reacting to (I was tested last June, with overwhelming results). It tests for antibodies and food intolerances—NOT allergies, which can be life-threatening (like my brother's peanut allergy). Here is a little info on this:
"An immunoglobulins test is done to measure the level of immunoglobulins, also known as antibodies, in your blood. Antibodies are substances made by the body's immune system in response to bacteria, viruses, fungus, animal dander, or cancer cells. Antibodies attach to the foreign substances so the immune system can destroy them."
I also found this:
"Given the lack of correlation between the presence of IgG and physical manifestations of illness, IgG testing is considered unproven as a diagnostic agent as the results lack clinical utility as a tool for dietary modification or food elimination." source
Our bodies produce antibodies all the time. So these tests can be changeful in nature. I asked Dr. Stein what would happen if, for example, my perfectly healthy husband had an IgG test done. Would it show he was intolerant to a handful of different foods? The answer: Probably. Would they affect him negatively? Probably not. Sooooooo. Where to go from there? I'm avoiding a lot of foods based on this test. And guess what? Changing my diet caused my health to immediately improve. And I've kept that stable for a year (I'm not 100% all the time, but I am functional and happy many days if I am careful about my diet). So when Dr. Stein asked me to think about reintroducing some variety back into my diet, I almost freaked out. I don't want a repeat of last summer! I am scared. I admit that. "I'll give you dairy," he conceded. "Avoid dairy. You are definitely lactose intolerant. Take Lactase/Lactaid if you have to encounter cheese." (I've had lactose issues in the past, as well.) And when I do start to reintroduce foods, just don't go overboard. In fact, don't go overboard with any meal. He would rather I eat half a meal and save the other half for later, to save me from a bad IBS-type reaction (to recap, IBS and SIBO often go hand-in-hand). I haven't started reintroducing major trigger foods just yet. But I plan to. Right now I am starting slow with some of the gray area foods on the gluten-free menu (salsa and vinegar, for example). I just have to muster the courage before I eat a hamburger on a bun. I need to block out a week of my life in case I relapse. I told you I'm freaked out—last summer was awful! In the mean time, he recommended the low FODMAP diet to start (info HERE).
On a similar note, a doctor in my family suggestion that this could be immune-system related (seems well-founded). He prescribed a week of steroids, and also asked that I reintroduce a food that normally would be harmful as a test (hello burger on a bun again). Then I would see if my body reacts after that round of steroids. So that is also in my plan. Again, I just have to psych myself up for it. **For those who have emailed me and are experiencing other illness and unexplained issues, I might recommend looking into an immune system response as to what might be going on.
To address another issue, Dr. Stein did not think "leaky gut" was exactly happening. He shook his head at the idea that the bacteria was causing damage to my small intestinal lining (as thought on some websites). From what I read on immune system response, it is more likely that the SIBO bacteria is causing immune reactions, but it's not boring tiny holes in my gut and leaking things out into my blood stream. I trust Dr. Stein. He's a smart cookie. So I am going to let the leaky gut theory slide for now. Maybe it's true for some people. But for me, it's one less thing to have to worry/postulate about.
So food aside, how have I been doing this year? Well, I took the aggressive treatment for SIBO back in December. I felt OK after the 10 days of rifaxin/neomycin. My original, more problematic IBS symptoms were in check. But I had new issues like intense small-intestinal cramping 20 minutes after I ate, and heartburn like crazy. The heartburn was so bad that it started to cause the sensation of a lump in my throat (a common thing, apparently), exacerbated by stress (ugh). So I wasn't totally fine all the time. I would have "iffy" days and good days, depending on what I ate. Dr. Stein said only 40% of patients respond to the antibiotic treatment. Sure, I could have had some initial relief, but it's only a matter of time before the bacteria comes back. It could be 2 weeks, it could be 2 years. Some patients become antibiotic dependent (no fun). What I really needed was to get my "gastrointestinal motility" back on track (Google "cleansing waves" it if you want more info on that).
Since I was still having symptoms, Dr. Stein decided to do an endoscpoy/colonoscopy to rule out any other issues. Woah. That was no fun. I won't go into all the details, but going through colonoscopy prep when you are already feeling depleted leaves you thinking you might be dying at 3am when you wake up dehydrated, shaky, and seeing stars. Two tiny sips of water and my husband's reassurance did the trick. Everything else went fine. I HIGHLY recommend asking your doctor for the pill form of the colonoscopy prep (called Osmoprep) if you have to go through that. I didn't have to drink anything gross. I didn't get nauseated. Worked like a charm. And the results of all scoping was completely negative. No ulcers. No cancer. Not even any minor damage from the acid reflux. No celiac. And all biopsies came back normal. Awesome! Wait. I am still getting sick. Wha???
Dr. Stein said I looked great. Which was great (no more Osmoprep until I am over 50). But I still need to address my continued issues. Here were his options:
• low dose anti-depressants to reset the brain/gut connection
• hypnotherapy (popular in Europe)
• a motility drug like erythromycin or Motilium
He recommended I try the low dose antidepressant first (Elavil). It was HORRIBLE. I was so drugged on even the low 10mg that I was in a dream state and couldn't wake myself up. When I was awake I cried all day. Then when I quit the drug, it took 3 full days to leave my system. It was scary. Dr. Stein pulled me off that immediately. He offered to let me try a different antidepressant. No way. "No problem," he responded in his email. "Let's try Motilium."
I am allergic to E-Mycin, so Dr. Stein recommended I try Motilium instead. The clinical name is Domperidone. They don't make it in the US, but I could order it though online pharmacies without a prescription. "It's an awesome drug," he assured me. Low rate of side-effects. Doesn't pass the brain-whatever barrier. And it regulates/encourages GI motility. It is often prescribed for patients with SIBO, cancer patients with nausea, and even mother's who need lactation help.
Now here is where things get all Twilight Zone. Two years ago when I went to Greece and got so terribly sick (the catalyst to these unfortunate events), the doctors sent me home with 4 boxes of a drug called Cilroton. A drug whose clinical name is Domperidone. A drug still in my medicine cabinet. Wait a minute. Isn't that also Motilium? YEP. Indeed it is. I was asked to take the very drug by the Greek doctors asked me to take when I first got sick. I took that drug like it was going out of style just to get me through the nausea on my 2 day flight home from Greece, only to let the last 19 pills sit untouched in my cabinet for 2 years (good thing it wasn't expired). Dr. Stein got a kick out of that strange coincidence, and asked I try it for a week. Good news is I had a week's supply on hand. And I am super happy to report that I had no side effects (a little drowsy the first two days, but that could have been due to little kiddos in my bed at night). And all of my nausea was gone. My heartburn was better, and I only had one mildly "iffy" day all week. Granted, I still haven't reintroduced any new foods yet. But it's a start! Dr. Stein approved it, and wants me to take 10mg 3x a day. I ordered like 300 pills on discount from Australia. The idea is that this drug will help the cleansing waves of my GI tract, discouraging any bacteria from entering the small intestines. This week without it my heartburn returned full force. In a few days, I am sure the nausea will be back too (they tend to go hand-in-hand). So I will be very happy when my shipment arrives!
In the meantime, I am going to see a highly recommended naturopath (found HERE). She will do a little acupuncture, light-therapy, and prescribe a 6-month plan that will probably include dietary supplements/advice. So things are moving along. I am continuing to be proactive. And I am trying very hard to remain positive. I receive so many emails from people struggling with more intense versions of this illness. It breaks my heart to hear from mothers of young children battling depression on top of SIBO and IBS. My recommendation to you is to seek out a specialist. Whether is it a GI doc who focuses on SIBO (make a trip to LA if you need to), or an immunologist, or naturopath, it could be worth it. You might also try the low FODMAP diet. It could yield quick results.
And finally, in terms of staying positive, I do a lot to encourage that. I have my faith, and a supportive family. Those things are a tremendous support. But the days I get enough rest and fresh air (though that may sound small or simple) are the days that tend to be my good days. I am not expecting to suddenly beat this. If that happens, GREAT! But I would rather live with the reality that I could possibly be dealing with this for another 2 years or 20. I hope sincerely that I won't be dealing with it that long (or at least sending it into remission). But it's part of who I am right now. And the best thing I can do is listen to my body, and help give it what it needs. I have down days. Of course I do. But it doesn't make my day any better when I dissolve in a puddle of tears (though sometimes I do it just for good effect). I indulge in the things I can eat, and try not to focus on the things I can't. When things seem to come to a dead end, I try a different avenue. And when all else fails, I escape into a movie or book. It helps. There are lots of support forums on the internet for SIBO. I personally find them to be downers and generally avoid them. But some people love the community. So that is another recommendation. If you have specific questions, please feel free to email me. I try to answer as many as I can, but sometimes a big post like this is just better.
To good health! Or maybe least semi-stable health. Or at least the option of eating gluten/dairy-free cookies every now and then. :)
You guys should have seen the spell check on this post!