For over ten years I had really bad stomach pain. It seemed like everything I ate hurt my stomach. My bloat was constant and I couldn't pin point what was causing it. I couldn't work out past 3pm (basically after eating food) and I felt like I needed to lie down more often than not.
I navigated through life. During these ten years I graduated college, got married and had my girls. I saw 6 gastroenterologists (who all told me I either needed to be on probiotics or that they couldn't figure it out), and basically got no where. I did every single test you can imagine. Colonoscopy, endoscopy, endless blood work you name it and nothing. It was so frustrating and things only got worse.
No one seemed to believe me. No one seemed to believe that I was in pain. I started to lose weight, actually got down to 95lbs because I couldn't figure out what to eat and quite frankly was scared of food. Nick and I would get into arguments because he didnt know what to do or how to help me. My parents didnt believe me either and I felt so alone. Everyone thought I had an eating disorder and to be honest, because I couldn't figure out what was causing the pain and because no one seemed to want to help me, I started to believe it myself too. OK maybe its just an eating disorder?
But I didn't (and still dont) own a scale, I was horrified with the way my body looked and I genuinely wanted to eat and drink with those around me. But the pain took over my life, my body and my day to day.
Luckily when I was pregnant, this pain seemed to go away. I thought, ok maybe after I give birth it will go back to normal! I will be cured! I gained the normal amount of weight I needed to with my twins and I was so happy to eat chocolate cake and potato wedges without feeling any pain.
Unfortunately all the symptoms came back a few months postpartum. I started to get really bloated again. My bloat though was always in my upper GI, above my belly. It was right around my rib cage and the only thing that made it feel better was putting pressure on it.
The cycle continued. Again, no one believed me and again thought I had an eating disorder. I felt so isolated and empty inside. How could people continue to say things like that to me? I had to focus on taking care of my twins. I continued to live my life and started to think that this is how it was going to be. I was going to just be in pain after every meal and thats just what I had to deal with.
And I did, for. very long time!
Until finally I decided to push harder. I knew I needed to be my own advocate and was basically on my own. So I looked on instagram! Yep! My source of information and connection these days. More so just to see if I could relate with anyone's newest diet or fad. Just to see if there was something that would resonate with me. And there it was, I remember perfectly. I was sitting on the couch, one week before leaving for another NYC trip and finally felt like I had found the light.
The Low Fodmap Diet.
FODMAP is an acronym, derived from "Fermentable Oligo-, Di-, Mono-saccharides And Polyols".They are short chain of carbohydrates that are poorly absorbed in the small intestine. They include short chain oligo-saccharide polymers of fructose and galactooligosaccharides(GOS, stachyose, raffinose), disaccharides (lactose), monosaccharides (fructose), and sugar alcohols (polyols), such as sorbitol, mannitol, xylitol, and Maltitol.
I was hooked. I found a few women who were practicing the low roadmap diet (actually in Australia) and I knew this is what I had to follow. I ended up finding dietitians who specialized in this here in the states and finally found my current savior, Tamara Duker-Freuman MS, RD, CDN. Finally, someone who believed me and knew exactly what I was going through. I finally felt validated.
"Have you been tested for SIBO?"
Based on my "whats that" answer clearly she knew I hadn't.
"Small intestinal bacterial overgrowth, it sounds like you actually have this."
So I found the ONE doctor who tested for this in San Diego, (maybe there are more now but at the time he was the only one) and I went to get tested. This wasn't just a normal blood draw or check up. The SIBO test is a breath test. It tests for excess bacteria in the small intestine that can lead to the release of the gases hydrogen and methane.`The only way to identify this is through a breath test, a 3 hour breath test. So basically, after fasting the night before, every 20 minutes I had to blow air into a bag. Then sit there and wait for the next time I needed to blow.
So, a few days later, guess what, I was diagnosed with SIBO! My eyes welled up with tears. I was so relived that we had finally found an answer after 10 years of physical and emotional pain. I felt validated, I felt human and I felt like I was finally SEEN! Nick was so happy and it felt like we could finally work together to fix what was going on. See, being sick all the time does a number to your relationship especially when you have no clue whats going on. It affects your life socially and emotionally and in turn causes a lot of hardships on a marriage. It did to us anyway. He felt happy but I know he also felt so bad that he hadn't believed me for so many years.
So here we were, SIBO! Now what? Well now came the tough part. I had to take antibiotics for two weeks to lower the inflammation and kill some of the bacteria. The problem is that SIBO doesn't go away but you can contain it through diet. The elimination diet. Basically we had to try foods that could be making me feel this pain and if they affected me we would have to cut them out for some time until my body healed and I could reintroduce them.
So thats what we did. My dietitian would assign me foods, serving sizes and times of the day to eat them. I would make note of how they affected me, good or bad, and then would report back to her. We did this for almost a month! Until finally we had a good handle of what I needed to avoid.
Over the years I have learned how to work with my body. I know that im highly intolerant to garlic and onions (which I was eating daily), apples and pears, cauliflower and mushrooms and well the list is a little too long to keep going. But all of these foods were a part of my daily diet! The best way to describe how sibo gets triggered is by thinking about it as a big pot. The pot is my stomach, and the more intolerable foods that I put in it, the more pain I am in. Bacteria can start to grow again and cause a flare up. So I've learned how to manage my "pot" and put things in it that wont affect me.
For example, I am allowed to eat 8 almonds. Yep, just 8! So if I end up eating 16 then I have to remind myself to not eat other foods that I'm more intolerant to. Or if I have a great day I know I can go out to dinner and enjoy a glass of wine and maybe not feel perfect the next day, but good enough to know that it didnt affect me too much.
So this is my life. It's a lot of monitoring and regulating. Restaurants are hard because well garlic and onion are in EVERYTHING!! Thankfully most restaurants lately are very understanding and it doesn't hurt to have a husband who helps me voice what I need because it can be draining some days and having support is such a huge part of being able to manage SIBO.
Thankfuly, I was able to gain the weight back, and then some (thanks to IVF LOL) and im able to eat a lot more foods than I was eating 3 years ago when I was first diagnosed. I have to make a lot of choices during the day but Im so thankful that I know what my triggers are now. I know that if I eat something I shouldn't that I will feel bad the next day. But I can be prepared! I can look back and pin point exactly what caused my pain rather than not know what is going on in my body.
Im crying as im writing this. Happy tears tears of relief but also tears of sadness. This journey took so much life out of me. It took up so much mental space and caused so much anxiety for me. I would feel so anxious going out with friends and family because I knew what they were saying, knew they didnt believe me. But I knew there was something wrong. This couldn't be the way people feel after they eat.
Im proud of myself. I'm proud that I listened to my gut. I'm proud that I didnt' give up the fight and that I was my own advocate. Im proud that I worked through this ON MY OWN and I'm proud of the woman its made me.
Much like IVF, its something I have had to work really hard at. Something that I know I had to get through and something that I knew I couldn't stop fighting for. So if you're reading this, and youre going through something that is hard, something that only you at times seem to be fighting for, I urge you to keep going. You know yourself better than anyone ever will. Always trust yourself, always trust your gut (no pun intended).