Disclaimer: I will be discussing some sensitive stuff in my posts…. If you cannot handle blood, mucus, bowel movements and other bodily functions, this blog may not be for you. For the guys reading, menstrual cycles will be discussed. My hormones were so affected by this that it must be added. Fair Warning! Also, remember I am not a medical professional. I am writing about my own experiences and what has worked for me. Please consult a medical professional with your own health concerns/needs.
Disclaimer #2: In this blog, I discuss my own personal journey of becoming diagnosed with SIBO. It was a long and, honestly, ugly one. I am sharing my own experience of the condescending treatment I received from doctors. I do not discredit any of these doctors, their knowledge, or experience. We are all human.
I am not a writer, but I have a lot to say!
“Darling, trust your gut. No, You’re not crazy. Don’t let them have you believing you are.”
-AGUTSYGIRL.COM
It was time to start trusting my gut. I knew I was not crazy, and I also knew I needed a healthcare provider on my side. In the past six months, I had been to 4 GI doctors (I never mentioned I went to get a second opinion outside of the military - same story, different day), a cardiologist (who honestly listened but because my heart was fine, couldn’t do anything), and an allergist (allergy test had shown no allergies). I am not sure why I waited so long to investigate a naturopathic doctor. It could be because it seemed to go against the norm of how I was raised or that it was going to be an expense out of pocket. However, it took months (or should I say years) of neglect by allopathic doctors to finally push me to research naturopathic doctors.
From being members in many Facebook groups, I knew many people with similar issues were getting more help from using functional medicine and naturopathic doctors. Functional medicine doctors have their medical degree from an accredited medical school and go on to get a certification in functional medicine (looking at a person holistically to find root causes of why they are ill). Naturopathic doctors go to naturopathic medical school to become a naturopathic doctor. Although they are not considered medical doctors, they follow the medical school curriculum but also complete training in nutrition, acupuncture, homeopathic medicine, botanical medicine, physical medicine, and counseling. They must pass an exam and apply for licensure in the state they will practice. It is important to note that not all states offer licensure in naturopathic medicine.
My GI doctor was not emailing me back. The antibiotic Rifaxim was bloating me to look like I was 16 months pregnant, but I was eager to start the neomycin to help eradicate the methane producing bacteria. I was desperate but also determined to beat this thing. My mindset was “I got this…bring it on”. As each day went on without a response by email, I begin calling and leaving messages. To no avail could I get him to respond back to me. Knowing this was not going to be easy on my body, I had taken two weeks off from work. I needed the time for both my physical and emotional health. I was right. During the “kill phase” of SIBO, most people go through a period of die off symptoms (Herxheimer reaction). This is when the bacteria are being destroyed and there is a rapid release of endotoxins in your body. Your immune system responds, and inflammation occurs. This can lead to worsening symptoms (hence me looking 16 months pregnant) but no one warned me that my body would have an awful time trying to get rid of these endotoxins. I had no knowledge of detox pathways or that my pathways were already hindered due to years of gut, hormone, and mold issues. During this die-off stage, I had joint pain, an achy feeling over my liver, headaches, breathing issues (the bloat from my abdomen was pushing up into my diaphragm), itchy skin, night sweats, and acne. Before being treated, I was not constipated nor was I having diarrhea. Although for years, doctors were telling me I was constipated because every time I got an x-ray of my belly, they would tell me that I was full of stool and gas. I “went” regularly, so how could I be constipated? Yes, SIBO is when bacteria are found in the wrong area but SIBO really is a motility issue. I will get into why later, but it is when your Migrating Motor Complex (MMC) is not working correctly. So, by that point, I was going over a week of not going to the bathroom along with bloating that made me look pregnant…. I was not comfortable.
Enough was enough! I researched and emailed a few naturopathic doctors. I was elated when I had one respond back that she had dealt with others with SIBO and she could see me that week. Halleluiah! My initial appointment was an hour and half long. I brought in all my tests and results. She listened and we came up with a plan. She said it’s not going to be easy and it is not going to be a quick fix. It took years to get to this point. I left crying because I felt like I just maybe had someone on my side.
After my initial appointment with her, I began to realize the issues we have with our healthcare system. Our doctors are not really working for us but the insurance companies and big pharma. Remember: I do not discount medical doctors and nurses. I truly find them valuable and believe they are hard workers. There is burnout among the health profession, as well. Most go into the field to help people but get discouraged because of time constraints that are placed on them. They don’t have time to look at the whole person. They work in a reactive way (“Here’s a symptom so here’s a pill” environment). Instead of working in a proactive way (If we look at why you are having these symptoms, we can fix it).
During the six months of pre-diagnosis, not one doctor requested a stool sample from me. So, when I was told that was where the naturopathic doctor was going to start, I thought that was smart but why the hell did the GI doctors not order one? Do you know that when I saw yet another GI doctor a few months later (I had to get my colonoscopy) and I told him about my experience and the stool test, he said its best to leave those types of tests to functional medicine and naturopathic doctors because they are the ones who could interpret them the best? SAY WHAT? Didn’t you go to school for the gastrointestinal tract. As I said before, I walked out of these appointments shaking my head so many times.
My Genova Stool test came back with dysbiosis (imbalance of bacteria) and fat malabsorption. The good thing was, I didn’t have any pathogenic bacteria such as C. Difficile, h. pylori, etc. I did have some bacteria that was in higher levels that they consider opportunistic (meaning they could become pathogenic if I was not careful). She had me finish off my antibiotics and then I was to give my body a break for two weeks before we started on antimicrobials. Antimicrobials are herbal treatments that are like antibiotics. There are many studies done by the National Institute of Health (NIH) that state that antimicrobials have better success with SIBO than traditional antibiotics.
I was instructed to do six weeks of the antimicrobials and to follow a low FODMAP diet. Luckily, I knew what to do for the low FODMAP diet because years ago I believed I had SIBO. I was not as sick as I was this time, but I followed this diet and I felt so much better. There are a few diets out there that people are instructed to use when they have SIBO. They are not meant for long-term. FODMAP’s are a type of carbohydrates found in certain food. FODMAP stands for:
F – Fermentable
O – Oligosaccharides
D -Disaccharides
M -Monosaccharides
A - And
P – Polysaccharides
Common FODMAPs are fructose, lactose, fructans, galactans, polyols. Basically, all the fun stuff you want to eat. These are small carbs that many people cannot digest. In a person without SIBO, these carbs would make it to your large intestines where the bacteria could break it down and use for energy but with SIBO these bacteria are doing this in the small intestines, and this is why it causes bloating and other symptoms.
So, there is a lot of confusion in the SIBO world. Some practitioners want you to do a low FODMAP diet while treating (usually when you are taking antimicrobials) but some want you to eat all that you can, so you are drawing them out while you are trying to kill them. These sneaky little things don’t just reside in your digestive tract, they burrow in biofilms along with fungi and yeast. See I told you nothing about this is easy. Biofilms are gooey layers that house these bacteria. It is a good place for them to hide. You can find biofilms in any mucosal area. Another great place is the sinus cavities. If you have recurrent sinus infections you can’t get rid of, it may be because the bacteria are hiding from you. More about biofilms soon. I promise!
I start taking the Candibacterin AR and BR (antimicrobials). OMG! I thought I was going to puke taking the AR. It is oregano oil and I felt like I was eating a pine tree. I didn’t tolerate this very well because I was becoming extremely dizzy. So, a phone call to my doctor (Yes, she called me back within a few hours) and she quickly switched it to Allicin. This is a compound that is produced when garlic is crushed. Weird at first because garlic falls in the Oligosaccharide group, but I was told that the portion you can’t have with SIBO is removed in the process of making this supplement. Within a few weeks, I was feeling better than before. I still could not eat much but I felt the brain fog lift. Then one day, I go to the bathroom and I see what I think are worms. To say I almost had a heart attack is an understatement. We will get into it later but people with SIBO are also prone to having parasitic infections. I told you this just keeps getting better. I call my naturopathic doc and unfortunately, her office is not close to me. She calls a local urgent care facility in my area and spoke with a doctor and asked if he would put an order in for me to have my stool tested. She directed me there and told me it was all in place and they were expecting me. I brought my sample in and two weeks later I get a call from my naturopathic doctor explaining that my stool was not tested properly. The urgent care doctor didn’t put the right order in. Shake my head!
A few weeks later in August, I was still on my antimicrobial and I had received another dose of rifaximin from GI doctor. I went in for a colonoscopy. Oh, it is so much fun getting older. I had a few of these procedures done in the past but I was more nervous about this one because of the weight loss and still not feeling well. Also, during any of these procedures I am watched closely because of my history with serotonin syndrome. Just one more thing to worry about anytime I get put out with anesthesia. I made it through the prep fine and the procedure and was told I was clear for 10 years. No polyps for me! Thank you because the prep is the absolute worst. About 4 hours after I come home, I get this incredible urge to go the bathroom again. I run for the toilet and when I look there is no stool, but four to five long (about 12 inches each) white/yellow worm looking things. Now I am upset! I call the GI office and spoke to the tech and explained my history. There was a reason to believe that I had a parasitic infection. I was placed on hold and then told by the tech (no doctor came to the phone) “the doc thinks it’s just mucus”. So, I flushed it and went about my business. I was smart and took pictures though. I sent them to my naturopathic doc who confirmed that they are called rope worms/mucoid plaque. Excuse me? Worms you say. They are usually the grudge that make up the biofilms and are not actually worms. Although the experience was awful, it really did bump up my healing. I felt better after that cleanse so maybe there is something to this colon cleansing thing.
I stayed on the antimicrobials until November of that year. I had been treated on and off for nearly 8 months. Another SIBO test was ordered after 8 months and I still had SIBO. My numbers had come down, but I still needed to be treated. This is when you know that your root cause needs to be found. So, the hunt continues to find that needle in the haystack.
These eight months were hard mentally and physically. As you can see in my blog, I have described physically what my experience was, mentally it is harder to portray through writing. I was elated that I knew what was making me sick, but on the other hand I really did not know what was making me sick. Even as I write this 2 ½ years later, I am still looking for my root cause because I keep relapsing. Many things contribute to this horrible condition. Suffering the way I had and wanting answers has taken up so much of my time. Although COVID is here and it has taken the pressure off me to be somewhat social, I still worry about what will happen after the restrictions are let up. Going out to eat is difficult. Watching people eat "normally” is hard. Only recently have I been able to add in some comfort foods such as oatmeal to my diet. I am starting to play around with some foods to see what I am tolerant of. This battle has been exhausting. I know past antibiotics and food sensitivities have played a role in this issue along with severe stress and anxiety. Although I have had stomach issues for years, the few years before it got to it’s worst, I found my biological family. Although there was much joy in this endeavor, there was a lot of sadness too. Although I have known all my life that I was adopted and I had moments that I would really think about what adoption meant for me, my biological family, and my adoptive family, the trauma for all involved revealed itself when I came out of the “adoption” fog.
Here are two sites that can help you locate functional medicine/naturopathic doctors in your area if you are interested.
Blogs to come:
My adoption Story!
Live Healthy! Live Happy!
Hello! I am a friend of a friend/co-worker of youEd and she sent me this blog because i am having health issues/ stomach issues/ panic issues. I was suppose to get tested for Sibo last year but it got canceled because of covid. I will reschedul. I also have an appointment with a naturopath in May. I recently came off of antidepressants to look for alternative methods. My anxiety is so bad, it’s worsening my health issues. I honestly dont know if the could be Sibo causes the anxiety or vice versa. If your up for it, it would be awesome to talk to someone who has been though it!