I am frustrated by SIBO beyond words.
If you know me and have been around my blog long enough, you know venting ’round here is not typical.
SIBO is a ginormous, mammoth, huge and ugly beast. I have battled with it head on for a very long time. Andn I have gone months and months in remission then had it come back and it was yet again gone……
Until now.
At least I’m quite certain.
This is not a post to tell you about how to help heal your SIBO, nor is it to give you any information.
Instead, this post is, quite literally, just me sitting back saying, “why in the world?!”
I was doing so good, and then my doctor suggested we re-test the SIBO to make sure it had been completely eradicated after the last round of Rifaximin/Neomycin combination.
So, I agreed. A week ago from Sunday I prepped and a week ago from yesterday, I completed the SIBO test.
Immediately after I drank the SIBO testing substrate, my stomach began to hurt. I noted in my Healing Bullet Journal later that day, “Did that SIBO drink trigger the SIBO to relapse?”
I felt hungry for the rest of the week but didn’t think much of it because, well, female time of the month and I thought that meant no way it could be the SIBO.
Horrible upper stomach pain
But then Sunday came, and that horrible pit in my upper stomach returned, making me crave anything and everything, eating anything and everything and simultaneously feeling as though I hadn’t eaten in days. I wanted to brush it off, but my gut feeling told me something was not right.
And from the beginning of the day yesterday, something was not right. I struggled all day long in all the ways I do when SIBO is present.
Frustrated by SIBO
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By the time I went to bed last night (before 8pm), all I could do was feel absolutely defeated and heartbroken. I would have cried myself to sleep, except that there was a beautiful miniature girl who wanted, “cuddle time with my mama” and consequently made me smile.
How could I have been so well, and then (literally) overnight not well?
And really, what gives? Why does this keep on happening?
I am so strong for so long. And then I absolutely, completely, 1,000% crumble and want to crawl in a corner and sleep until I wake up and SIBO has not taken over my body.
I am so frustrated that I feel like the substrate triggered me, even though it might just be pure coincidence.
And I am frustrated that every time I think I’ve beat it, it comes back and slaps me hard.
Frustration builds because the truth is that I cannot quite possibly change my diet anymore. While I have been a little more lenient on AIP lately, I have not strayed much from it and AIP is stringent.
Insert to add (in 2020): This is because you CANNOT diet harder.
I am frustrated by SIBO because I’ve been working so hard on the (bigger) element here, lifestyle – reducing stress and increasing motility (in fact, up until Monday everything was moving through me almost perfectly).
But frustration is a funny thing
The more frustrated I get, the more my stomach physically hurts (= stress).
What I know is that I cannot stay down in a frustrated state for very long.
My SIBO testing results should be back within a week. If I had to guess….testing results will show I still have SIBO. And at that point, I’ll do yet another round of antibiotics and then never test again until I show signs of a relapse.
No one told you or I this road would be easy. On days like today, I find it not very beautiful or pleasant.
I keep on these roads, though, because they are all I’ve ever known. And I strive to make them the best I can.
p.s. I’m dying to ask you, any of you who have ever battled SIBO…..did the substrate ever cause this reaction for you?
Updated in 2020: I am healed.
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Xox,
SKH
You will heal. I will help.
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i understand friend. Have you worked with kelsey http://theancestralrds.com/about-kelsey/?
Love her!
No, because I think that’s far from necessary. In fact, I don’t even think I need my doctor anymore….from a “diet” standpoint there is nothing more I can be doing and/or that I don’t already know. But I’m glad you love her!
I feel your pain and frustration my friend, I really do. I did have that reaction to the testing drink (lac-something).
I am not sure if this is what helped me eradicate SIBO, but before my last test that came back negative my chiro did ART on my abdominal area. I heard about the effective of motility work on Dr Ruscio’s podcast. My chiro has been doing ART on me for years due to running, so when I posed it to her she was game to give it a try. It’s something she does regularly for me now.
Just something to consider.
I am sending good thoughts your way for test results with forward progress.
OMG…..THANK YOU!!! I really, truly, honestly believe it was that. I could NOT have been doing any better. Until that. While I”m not happy that it happened to you, I am THANKFUL that you had a “me,too” so I know it could be a real thing. I am waiting to hear back from my doctor, and I’ll let you know. Thanks for the thoughts:) xo
Have you considered elemental diet for 2-3 weeks? Very high eradication success rate. Vivonex is the commercial route, but homemade elemental option on siboinfo.com too.
Yes, I have considered it and have written about it, but I don’t think it’s going to be for me. I believe that because I’m still in recovery mode from severe Adrenal Fatigue, it would not be best for me at this time.
I am in the same boat – battling SIBO for two years, and have tried everything and taken everything. I’ve read soooo much about it and have read a bunch of stuff about people reluctant to retest because the substrate causes the bacteria to come back, so you’re spot on. I am just about to start an aggressive month of herbal pills four times a day that I received from a Natropath. Have you tried the herbal pill route? Berberine/Alicine, etc? I’ve heard/read a big no no on Niomicin from the naturopaths I’ve been to and that the bacteria becomes immune to antibiotics if you keep taking them.
LOVE this Jeanna! Thank you, thank you for another confirmation that I’m not completely losing it! I’m literally livid today, and trying to find my peace deep within. The struggle is so. dang. real. I have done the herbals. I might try that again. My holistic MD, while amazing, is also just a person, like anyone else. I TRUST what he gives me, and I TRUST that the round of antibiotics for me are necessary (since the herbals in the beginning didn’t work). Once my test results are back, I’ll let you know what I decide to do. Hang in there….great advice for myself today as well:)
Sarah, I take the lactulose as a prokinetic, and now I am worried this is causing constant relapsing for me after reading your post……My doc had said it is much worse for my sibo for me to be constipated, and the lactulose keeps me moving, but my sibo always comes back…..hmmmmmm. What prokinetic is woking for you- ldn? I may need a change.
Really? That as a prokinetic? I’ve never heard of such a thing! LDN has been amazing for me!
It is used to help the chronic constipation. But I’m just starting to think it is reversing any of my efforts to keep sibo away, oh it definitely helps with the constipation. I used to take ldn before the heart stuff and loved it. Are you able to get it at your local pharmacy now – years ago I needed to order it from a specialty pharmacy .
Yes, I get it from a special pharmacy in Florida. I’m so curious about the fact that some doctors use it as a Prokinetic. I should ask my doctor about that. I certainly never would, but it just goes to show how different doctors, patients and people in general are:)
Yes, I like my doctor a lot, but I feel like I know more about small intestinal bacterial overgrowth than she does…. I have just been too lazy to find someone who specializes in it with everything going on! Can you message me that pharmacy number so if my doctor agrees to try it again we can use it?
Yes ma’am!
I’ve only recently tested and learned that I have SIBO. The substrate gave me horrible diahhrea. I thought it would never stop.
So sorry to hear, Rose!