Why I am sharing about my health
For all of you out there battling chronic digestive illnesses and autoimmune diseases, this post and the entire Natural Wellness section of this blog are dedicated to you. Whether you have a mild case of “Irritable Bowel Syndrome” (likely caused by SIBO) or a full-blown autoimmune disease, you know how much it has affected your life in ways that others just don’t understand. These chronic illnesses are not only physically debilitating, but also mentally consuming. Heck, I left work to dedicate myself full-time to my battle. I just couldn’t find the time I needed to research, learn about, and attempt to recover from my illness while working full-time, and working was completely draining me of the little energy I had left.
When I did finally get the time to start researching my illness, I came across many other stories online, and the individual stories of people battling chronic illness and recovering are what keep me going. I used to be shy about sharing such personal stories, but when I realized how much the stories of others helped me, I got the overwhelming urge to share my own. I don’t know how many people will read my stories, but I hope some who do will find them helpful. Maybe you’ll say to yourself, “whew, thank goodness I’m not as bad off as her!” Maybe you’ll learn about a treatment you haven’t tried yet, or you’ll feel better learning that I am going through the same thing as you. Maybe my stories will help you with your diagnosis, as others’ stories helped me with mine.
One thing I do know from experience is that many of the people who have not experienced anything on the chronic illness spectrum will probably not be interested at all in these stories and may even roll their eyes at them. I was there once. I sometimes miss those carefree and innocent days when I could roll my eyes at those people who were always complaining about their health issues. That’s ok. If you are one of these people, stay in that world as long as you can. I hope you remain innocent of bizarre and perplexing symptoms. However, you are welcome to read my stories if they interest you. Be warned, there will be talk about guts and poop! I’ve learned that we shouldn’t shy away from such topics. They are the important roots of our health that provide us with signs on the status of our health.
I am not one of those people who have been lucky enough to overcome their illness (yet). I am not offering consultations or products for a price. Though I commend those who have conquered or learned to manage their illnesses and found a way to truly help others and make a living from what they’ve learned. Dealing with chronic illness is time consuming. It only makes sense to make some money from all that time and energy spent. I am still in the thick of the battle. Some of my symptoms have diminished, and others have worsened. I have tried lots of treatments, and I have progressed and regressed, and I will continue to try more treatments. I am trying to stick with the more natural treatments, because I have learned through trial and error that treating my body naturally is best. However, there are certainly times when careful use of pharmaceuticals is helpful. I will share as I try various treatments, but first I need to catch you up on my diagnosis and nearly two years of past treatments.
I have SIBO (small intestine bacterial overgrowth). SIBO happens when for one reason or another the bacteria (i.e., “normal flora”) that resides in the large intestine moves up into the small intestine where it does not belong and overgrows there. These bacteria are the gas producers (e.g., hydrogen and methane), and while the gas they produce normally can easily escape the large intestine in the form of flatulence (aka, “farts”), when the gas is produced in the small intestine, it gets stuck there and causes all kinds of discomfort and damage to the intestine. There are many factors that could cause SIBO. One big one is food poisoning. Medical researchers have discovered that toxins produced by your typical bacteria that cause food-borne illness cause the human body to form an antibody (an immune system protein that binds to foreign proteins for the purpose of recognizing and, if necessary, destroying them) that also happens to attack human proteins important to the gut’s nervous system. The nervous system in the gut stimulates intestinal contractions to move food along (known as the migrating motor complex), and when these antibodies interfere with the nervous system, food moves slowly, allowing the bacteria to back up and overgrow.
This is just one cause for SIBO. There are many others, some still unknown. However, one theory is that simple “gut dysbiosis” – some strains of bacteria overgrowing and outcompeting others so that the microbial ecosystem in the gut isn’t quite right – could change things enough in the gut to slow down the movement of food and allow SIBO to occur. Gut dysbiosis can be caused by diet, stress, antibiotic use, and hormone supplements, such as birth control pills.
For more detailed information on SIBO, its potential root causes, diagnosis, and treatments, see Dr. Allison Siebecker’s extremely informative and up-to-date website: http://www.siboinfo.com.
In addition to the digestive symptoms caused by SIBO, I also have a slew of inflammatory symptoms affecting other parts of my body, some of which can be debilitating and some of which are just plain annoying. These are some of the symptoms I have experienced over the last few years:
- Severe plantar fasciitis in both feet that made it nearly impossible to walk for about two years
- Inflamed and dry eyes
- Continuous blurry vision (my view is similar to a poor resolution photograph, and it feels like it is caused by the dryness and inflammation, though no doctor has been able to figure it out yet)
- Poor memory and poor concentration
- Feeling drunk without drinking
- Diminished energy and stamina
- Tendonitis in my hands and forearms
- Numbness and tingling in my legs and feet
- Random shocks in my big toes
- Strange rashes
I am hoping that the root of all these symptoms is SIBO and the damage it has done to my gut. Even some people with full-blown autoimmune diseases like Lupus, Rheumatoid Arthritis, or Multiple Sclerosis have been able to reverse or manage these diseases by healing their guts, so I am hoping that I can do the same for my own unique “disease” by clearing up SIBO and healing my gut. (You can read the story of how SIBO completely changed the course of my life here).
Dr. Margit Winstrom, the “Good Old Fashioned Family Doc” – a medical doctor who practices functional medicine in Houston, Texas – diagnosed me with SIBO through a comprehensive stool test and a lactulose breath test. (By the way, Michael and I lived in Houston for about ten months after I left work in Ventura. He worked on a soil remediation project there while I worked on my health.) Before her, no doctor had taken my digestive symptoms very seriously. Previous doctors always separated my digestive symptoms from my long list of other bizarre and sometimes debilitating symptoms. They had diagnosed me with the beginnings of a possible autoimmune disease, most likely Lupus or Mixed Connective Tissue Disease, based on the elevated anti-nuclear and anti-DNA antibodies in my blood, and my list of symptoms. They said my antibodies weren’t high enough for them to formally diagnose me or prescribe steroids, so they told me to wait and watch my symptoms. Really?? I was supposed to just live with my current symptoms, watch them get worse, and then take steroids? I did not like that answer.
On my digestive symptoms, doctors acted as if it were my fault. I felt as if they were shaking their fingers at me as they told me to eat more fiber. Really? I thought I ate plenty of fiber! Well, I did try eating more fiber, and my symptoms got worse! In fact, in the months that I tried a higher fiber diet and probiotics, my gut blew up to the point that I looked like I was 4 months pregnant, or perhaps one of those starving children with the thin body and bloated belly. (By the way, Michael calls my bloated belly our child “Chafore” for CH4 or methane, and you’ll understand why after reading the next paragraph!) I would wake up in the middle of the night absolutely terrified by what was going on in my gut. Frankly, it felt like I had animals fighting inside my gut. I had to do coherent breathing exercises to calm myself down enough to go back to sleep.
Comprehensive Stool Test
On my first visit with Dr. Winstrom, she said that we should start with a comprehensive stool test. Being a science nerd, I was wowed by all that I learned from my poop! The stool test showed that I had higher than normal amounts of multiple strains of bacteria in my stool, including the methanogen, a methane-producing organism. This organism is not even a member of the Bacteria kingdom, but instead a member of the Archaea kingdom, organisms known for living in extreme environments. Methane has been found to slow bowel transit (Triantafyllou, K., Chang, C., and Pimentel, M. 2014), thereby causing constipation. I personally can attest to this. When I bloat up, my bowels seem to go to sleep, and I can get backed up for days. The test also showed that I had a very high amount of fat in my stool, a sign of SIBO.
Lactulose Breath Test
The next step was to do an at-home lactulose breath test. I had to follow a strict diet for a day and a half before the test, and then no eating for 12 hours before the test. The diet is composed of foods that are not effective at feeding the gut bacteria. I remember that I actually felt a little less bloated, and my constipation was relieved while I was on this diet. On the day of the test, I breathed a baseline sample into a test tube and then drank the lactulose solution, which does feed the bacteria. If the bacteria that produce hydrogen or methane are located in the small intestine where they shouldn’t be, then these gases will transport across the intestine into the bloodstream and be exhaled from the lungs within the first 2-3 hours after drinking the solution. After 2-3 hours, the solution enters the large intestine where this bacteria normally lives, and that’s when the test ends.
Twenty minutes after drinking the solution, the familiar pain in the upper part of my intestine started as the lactulose entered my small intestine. I had to take a sample of my breath every 20 minutes for two hours after drinking the solution. The bloating and gut pain worsened as the day went on, and in the afternoon I had diarrhea-like cramps, but I wound up constipated for several days after the test.
I had read about SIBO after the stool test, and the symptoms I experienced during the breath test seemed to confirm that I had SIBO. I waited for the results. Then I had a voicemail from Dr. Winstrom. She said that I had extremely high methane, peaking at 83 ppm from a baseline of 3 ppm before the lactulose solution. The methane spiked 20 minutes into the test, which probably meant that the overgrowth was quite high up in my small intestine. She called in a prescription for a combination of potent antibiotics to knock down the overgrowth.
This was the very end of March 2015. I was quite relieved to have a diagnosis, one that could certainly explain the digestive symptoms, but also one that could explain the inflammatory symptoms, based on the fact that damage to the gut can trigger inflammation and autoimmunity. After many months of fear, I was comforted by the diagnosis. Unfortunately, SIBO, or at least my case of it, is not at all easy to correct. My next post will briefly describe each of the treatments I have tried thus far, and then I will begin to take you through my experience in real time as I try to beat SIBO.
I would not normally mention the name of my doctor, but I am grateful to Dr. Winstrom, and I want readers to know about her. She listened to me, and I could almost see the way she took the information I gave her and critically considered it along with all of her medical knowledge. She takes a scientific approach to making a diagnosis, and she treats her patients with respect and care. I also admired the fact that she was honest about her limited experience treating patients with SIBO. In my experience, other doctors have either denied the existence of an illness they didn’t know how to treat or acted as if some pharmaceutical was the absolute answer to a given illness. I eventually sought the help of a naturopathic doctor for my SIBO treatments, but Dr. Winstrom found the root of my problems, and if I ever find myself back in the Houston area, I would want to have her as my primary doc.