The Short Story
My health story began long before my SIBO story did. I had been sick for quite a long time before SIBO was even a diagnosis. Fortunately, in 2014, I had a doctor who stayed current on research and we were able to test and treat for SIBO as soon as it was an option. While I will never know for sure, I was probably one of the first 1,000 civilians to be diagnosed. I was one of those off of the charts, probably had SIBO most of my life kind of people.
So we treated with every treatment available, and while sometimes the treatments would lower my SIBO for a short time, my SIBO always came back within days or weeks.
After two years of rotating through every treatment available we decided to stop treating and focus on doing every possible thing to heal my body that we could (including honoring and retraining the MMC and Vagus Nerve), and we found my SIBO went away.
Today, I still use a healing diet, and live an ultra healing lifestyle (yes, there is a difference between a “healing” lifestyle and a “healthy” lifestyle), and I have been able to live successfully SIBO-free for several years, all the while healing the other health issues I had before I began my SIBO journey.
I hope you stick around and find a lot of helpful tools to aid in your healing!
Elena
The Long Story
My Journey Through SIBO started at the beginning of 2014 after 12 years of poor health, three years of treating my gut for chronic H. Pylori, and parasitic infections, and 7 years of intense autoimmune issues.
I remember the phone call with my doctor when she asked me to research Small Intestine Bacterial Overgrowth to see if it was something I wanted to test for. When had just completed yet another failed treatment to help balance my gut microbiome. That failed two-month treatment included antimicrobials, antibiotics, and a diet far more restrictive than a SIBO diet. But my symptoms had returned with great destruction. As my doctor explained SIBO and the research that was just coming out, I remember knowing with 100% certainty that I had SIBO. Over the course of the next week, I read the book, “Breaking The Vicious Cycle” and read every single article, post, study, and website on SIBO. There was hardly any information at the time. SIBO was a relatively new diagnosis, and it was just beginning to move past the main research circles in Portland and California.
Learning About SIBO
After reading about the Specific Carbohydrate Diet, which was the main diet to aid with SIBO symptoms at the time, I dove right in to a short Intro Diet and experienced some relief of symptoms right away. I was either chronic diarrhea or alternating diarrhea with no bowel movements for a couple of days. We tested for SIBO and discovered off the charts results. Talking with my doctor, all the research on SIBO promised Rifaximin as a miracle drug. A one-time treatment of the expensive antibiotic would result in the eradication of SIBO, and allow me to move into a phase of healing.
My First SIBO Treatment
So, after saving up for a few months we treated my SIBO with Rifaximin and Neomycin. The results on paper were great! I did not have SIBO and the miracle solution seemed to work. But we were not prepared for what resulted. The side of effects of this treatment landed me in a situation worse than before. I experienced symptoms not often reported with Rifaxmin- I could no longer digest food. I had diarrhea like clockwork every 45 minutes, whether I ate or not, often having complete liquid for a bowel movement. My energy levels tanked, I lost weight, and couldn’t function. My doctor helped as much as she could, and we were able to reduce my symptoms to safe and tolerable levels, but within a short period of time, I was barely hanging on to daily life, and barely functioning. Several weeks later, my SIBO was back, and much worse than before. But, how could I do life like this?
I felt like I had unwillingly signed up for a life so terrible words couldn’t encapsulate my horrific reality. I was glued to the bathroom, and I experienced shooting pain in my gut so utterly debilitating I wanted to die. Between finding foods I could tolerate, making expensive recipes that were so disgusting I had to throw them away and my debilitating symptoms I struggled to find hope. Everything about my life had been disrupted and broken. I couldn’t work full time, my symptoms were so bad I could not join friends for outings, I couldn’t eat out, I could not fly to see family or to get away for a break, and any vacation meant we had to have a safe, clean bathroom every 30-45 minutes down the road we were traveling.
My sweet husband did everything he could to help encourage and provide for me. We transitioned me into a job I could work periodically, and part time. He helped me map out all the clean, safe bathrooms between our home and 8 hours of us so we could get out of the house. He saved up and purchased me a YETI cooler and travel mug, which both proved to be a lifeline for me, even still. He invested in my diet and encouraged me to learn how to make smoothies so I always had a safe, nourishing food in my travel mug. My husband poured into me with additional finances for experimenting with food, preserving safe food, and provided every resource he could to help me learn how to thrive in the midst of this horrifying journey. As we invested into my healing, we continued to treat my SIBO.
Finding The SIBO Specific Food Guide
When the SIBO Specific Food Guide was published at the end of 2014, I altered my diet, and again found relief of some of my symptoms. I was even able to gain small amounts of much needed weight, and had increased levels of energy.
Trying Other SIBO Treatments
In 2015, we switched treatment protocols and treated my SIBO with herbal antibiotics, then herbal antibiotics and essential oils, then the homemade Elemental Diet and herbal antibiotics. Every time we treated, my SIBO returned within days to weeks. I felt like I was on a deadly merry-go-round. And enough was enough.
After two years of SIBO treatments we decided to take a break from traditional SIBO methods with no promise of healing and no promise of ever treating again. All the protocols for SIBO were SO new, I felt like I was a test subject, and nothing was working long term. Doctors and researchers would say my treatments were successful because they did indeed eradicate my SIBO, but the bacterial overgrowth would come back so quickly the treatments felt like failures to me. And, not only that, but after the Elemental Diet, I quickly experienced unheard of side effects of chronic hives, throat closings, terrible skin responses to eating foods, and an overactive response to anything “allergy related.” We couldn’t figure out what my body was doing but it had clearly had more than it could handle.
Learning How To Heal My Body
At the end of 2015 we decided to do everything we could think of to heal my gut and my body. I had spent every ounce of spare energy I had for the last three years researching how to heal my body, so we had a lot of options to choose from. We added as much fish to my diet as we could afford, I upped my bone broth intake, I took a few different supplements to heal and support my gut (even though not SIBO recommended), I added healing essential oils to my body lotions and skin oils, and I began to implement using foods to heal my body, not just eradicate symptoms. And my body began to heal.
After so many treatments not working long term, we decided I must have adhesions. And by seeing yet another doctor, we were able to determine my crazy painful ileocecal valve was chronically open. No wonder I had chronic SIBO! That same doctor showed me how to gently massage my ileocecal valve closed, which I did every night as I was falling asleep, while envisioning my body healing. Adding intentional climbing and yoga, while we tried desperately to save up for adhesion therapy with Clear Passage, God began to heal my body. Within three months of switching from traditional treatments to healing my body, my digestive symptoms went away. I never did go to Clear Passage or treat SIBO through antibiotics (traditional or herbal) again. But I continued to live my life focused on healing for the next year and a half. While much of the information was not published at the time, I began to use the tools and tips now encouraged to help those with SIBO gain weight. I also used herbs and spices in my daily diet to help provide healing boots. My energy returned and for the first time in over 15 years I began to develop muscle mass.
Lasting Effects and Learning To Thrive
In January of 2016 we ran every test we could think of for my hive reactions and skin issues. Nothing showed up on my test results apart from Hashimoto’s or Autoimmune Thyroid Disease which we knew I had had since 2009. Surprisingly, my Hashimoto’s was lower than it had ever been and ALL other tests came back negative. All my other autoimmune issues were completely gone, and every other test we ran was normal. On paper, my body was functioning better than it had since I was a teenager. Apart from the hives, my body was feeling increasingly healthier.
During this time, I learned to thrive in the midst of great uncertainty. While my autoimmune issues and overall health continued to improve, I had no idea if my SIBO symptoms would ever return, if another illness was knocking at my door, or if I would die because my throat closed so often. I constantly carried epi-pens, Benadryl, and a very large supply of prednisone. Every set back was both scary and time consuming, but I chose the positive outlook as often as I could. A wise woman once taught me that life is a choice and so is attitude and love. I might have lost a portion of my life to SIBO, as well as many, many other things because of treatments and the illness, but I decided that no suffering is ever in vain. I could learn to enjoy life, and choose the good regardless.
At the beginning of 2017, we discovered my chronic hives, throat closing, and skin issues are increasingly common for people who had very difficult SIBO cases. This “allergy-like” response and Mast Cell Activation Syndrome (MCAS) is because of the stress from the SIBO treatments and destroying the microbiome to the point that the body cannot function properly. With this new research and knowledge, we changed gears from healing to rebuilding. In February, we tested for IBS through the IBS Check blood test. My results came back negative, but close to borderline. Because of this, my doctor believed I would have tested positive for IBS while I had SIBO. However, we had put in so much work to heal my whole body that my autoimmune issues were fast tracked towards healing as well. We again tested my Hashimoto’s Disease and it was the lowest it had ever been since we began testing 8 year prior.
While I added probiotics as often as I could tolerate after my last treatment in 2015, my body rejected almost every bacterium we introduced. But with new research, in March of 2017, we added the Align probiotic which helped reduce the welt hives significantly. We made more changes to continue to calm my body from past treatments and moved to a new, more allergy friendly home, and created a safe space for my body to continue to calm down. I decided to quit full-time work again, and reduce my social schedule to provide the additional rest my body needed. Everything we did to reduce stress on my body and strengthen my immune system helped with and reduced allergy like responses and MCAS symptoms.
As of May 2017, very little research is available on how to rebuild a human microbiome. Most researchers, even SIBO researchers, will say it is impossible. But I refuse to believe this. Through my journey through SIBO I have learned that doctors and researchers are not always right, there is no such thing as a miracle drug or treatment, and new research is constantly being published. The impossible is always possible. Thriving is always an option, and healing is worth fighting for. I am convinced that within another couple of years my microbiome will be healthy, appropriately abundant, and more diverse than the average American. Perhaps at that time, I won’t even have a hint of Hashimoto’s Disease.
I am knocking on the door of a reality I was told would never be possible: complete and utter healing.