The good days and the SIBO days

For the most part, most days I don’t have issues with SIBO. Then there are days like yesterday.

My kids are busy. I fed my son and dropped him off at swim practice then picked up my daughter from play practice. I took her to a local pub because they were having a fundraiser for the play and donating 10% to the drama club. We hadn’t been there before which always makes me a bit nervous.

The menu looked good! A lot of choices, reasonable prices. I ordered boardwalk old bay fries (my favorite!) and a chicken sandwich. Ordering chicken at a new place always makes me nervous because “plain” to me sometimes means something different than it does to the cook/chef. Sandwich came and was plain! I didn’t eat the bun.

The fries tasted weird to me. I had one and wondered if they were fried with fish. I didn’t ask; I just stopped eating them.

Picked up my son and headed home and I start to feel annoyed with everything. This is my first sign that I ate something wrong. I went to the bathroom a few times, sign #2. I thought I was starting to feel better. Got the kids in bed but felt restless myself. Couldn’t sleep. Couldn’t even sit still. Sign #3.

We go to bed early! I had been in bed since 9pm but was still not settled at 10:30. Used the bathroom a few more times and then it starts to hit me. Painful gas. Burps that thankfully did not lead to vomiting. More trips to the bathroom. I got hot socks and Gatorade because these sometimes help me feel better but nothing. My body goes into this weird wired panic where I can’t sit down. But I was extremely tired. So I was pacing my living room. My house isn’t large. I was walking in little circles.

Around 11pm I decided to wake up my 11 year old. My throat felt dry; was it swelling? I couldn’t be sure. I started having a hard time keeping my eyes open. I didn’t want to have an allergic reaction while the kids slept and have them find me unconscious in the morning. So I woke her up. I made her sit with my to keep me awake. It occurred to me that this was child abuse. Wake her up in the middle of the night and make her keep me awake. And of course for her, it was scary. My husband is in London. My body was shivering. I was hot and cold.

We walked circles together for an hour. She had tears of worry in her eyes. I kept saying “I will probably be fine! I already feel better.” But she knows I wouldn’t have woken her up if I didn’t need help.

After 10+ trips to the toilet, I don’t think there was anything left in my intestines. And my body started to calm so we went back upstairs. She snuggled into my bed with the dog wondering what the heck we had been doing.

I kept her up a little over an hour in the middle of the night so I took the morning off work and let her sleep a little. Now I’m cooking chicken and rice and beans so I have something safe to eat for lunch. Obviously, my leftover fries are not a good option.

I know it will be a joke when I get to work today that I am always sick. (Not from my boss but some of my coworkers.) They act like I am shirking my responsibilities. One woman’s daughter had SIBO that was cured with one round of antibiotics and she can’t understand why I haven’t just done what her daughter did. I have. Twice. The second time I lost a lot of weight and was sick for several months. My doctor and I decided that wasn’t a good idea again unless life was unbearable. Is it? Is life unbearable?

Mostly, this little incident adds to my worry. I am not one for anxious thoughts but it does raise concern. My husband is eating a lot of fish for his RA diet plan. What if I accidentally ingest some again? And if eating out is so hard, how am I ever going to enjoy our vacation in Hawaii in June? What can I take to eat that I know will be safe but will also be enough to nourish me.

Some days are good days and some days are SIBO days.

How are you feeling today?

I am 5’2″ tall. In 2015 I was getting quite anxious because my weight had dropped to 100.2 lbs on my bathroom scale. I had seen 18 doctors since I started feeling sick in 2013. The best diagnosis I could find was IBS-D, which basically just described that I had diarrhea all the time but did nothing to get at the reasons why it was happening.

Most of my life I have been very confident in my body. I felt strong even though I was small. As a kid I liked to run and climb trees. In high school I was a track and cross country athlete. I always subscribed to the “you are what you eat” philosophy. It hadn’t ever steered me wrong in my 35 years.

I had two great children from healthy pregnancies in 2007 and 2011. Both kids breastfed like champs and we’re for the most part healthy. My daughter, the oldest, was intolerant to dairy as a baby so I was dairy-free for the almost 2 years she was nursing. She outgrew her intolerance around age 6. My son had a few months of screaming and some blood in his stool as an infant which was chalked up to a “typical reaction” to the Rotavirus vaccine.

My health problems started when my son was weaning and my menstrual cycle returned. I had never seen anything like it. Every month near my period I was drenched in sweat, shaking, terrible cramps, heavy bleeding, and upset stomach. I was getting visual migraines and several times almost passed out. Three months in a row I was in the emergency room the second day of my cycle from almost passing out, dizziness, shaking twitching muscles, lethargy. I awoke one morning to find all my muscles twitching like a gentle seizure and was shocked when it took every bit of strength I had to lift myself out of bed. I called a friend to watch my kids, my husband was out of town, and drove myself to the ER where they did a few blood tests and sent me home. My bloodwork was always normal.

I was referred to a neurologist to test for MS. An ENT for vertigo. Normal. Normal. Normal. But I still felt awful. Exhausted. Drained.

My job was stressful. I was teaching at a disorganized and demanding charter school. My kids needed me a lot, they were 2 and 7. My husband is gone half of each month for work and we don’t have family around. The toddler wasn’t sleeping well. I wasn’t getting enough sleep. I drank a lot of tea because coffee upset my stomach. My diet was what I considered great. We ate whole fruits and vegetables, whole grains, no dairy, and little meat aside from wild caught salmon. I had discovered kombucha and was drinking a bottle a day. At night I’d have sometimes several glasses of red wine.

One day one the second day of my cycle, I ate a mango with my lunch. A few hours later I started feeling really hot. CO-workers were concerned because I was red. My stomach became upset and I ran to the school nurse and used her bathroom. I showed her my rash. My skin was scarlet, as if sunburned, from the top of my legs to the top of my scalp. My throat started to feel itchy. She gave me a Benadryl and called my husband to come take me to the ER. They gave me an IV in the ER, fluids, then Benadryl and a steroid. They kept me for a few hours and sent me home with instructions to take more Benadryl and a prescription for steroids. That did it. I haven’t been well since that moment.

The prednisone gave me high blood pressure, double vision, muscle pain, stole my appetite, searing jaw pain, insomnia, chills, upset stomach, confusion, and dizziness. My body has never been good at processing drugs aside from antihistamines and this was no different. Every side effect I had it.

My doctor at the time was an ass. When I called his office because of side effects for the prednisone the nurse told me I had no choice. When I started having chest pains they rushed me in to do an EKG but found nothing. When the doctor came in to deliver my normal test results he mocked me for wearing a heavy fleece and shivering on a hot August day. I can’t get warm I told him. He rolled his eyes at me. I found a new doctor.

I thought when I stopped taking the prednisone, I’d feel better but I didn’t. I was dizzy and had no energy for 6 more months. My family took a trip to San Francisco in March of 2014. I am not sure if it was the sun or just getting a break from stress and some time to sleep but that trip was really a turning point. I started to feel better and had some hope that I would improve.

I still had a lot of food intolerances but life was livable. I regret that my son asks me how I am feeling before he asks what we are doing for the day. He knows I have good and bad days and unfortunately, he doesn’t remember me before my body rebelled, when I felt strong. He only knows me dealing with illness.

I found a caring family doctor who told me she believed me that I felt bad and she would help me find out why. I saw dozens of specialists but continued to lose weight. I went in an elimination diet, and found that I best tolerate less than 20 foods. I drove hours to UPenn to see carcinoid specialists, had scans and tests. The good news was I didn’t have cancer, celiacs, or Crohn’s disease. The bad news was I was still losing weight and had no energy.

My gastroenterologist decided in 2015 to test me for SIBO using a lactulose breath test. The nurse asked me if u was okay after hour one. She said she wasn’t officially allowed to tell me I had SIBO but she had never seen such a high level and “textbook positive” curve. It was great to have a diagnosis. I took rifaxin (the prescribed antibiotic) and improved! I learned about the low FODMAP diet from Monash University. I restarted an elimination diet using the FODMAP guidelines.

My weight slowly went up then I got hit with another round of IBS-D. I don’t know why but my weight went down to 100.2 lbs. In the midst of the weight loss we tried another round of antibiotics which actually seemed to make me sicker. I read every blog I could find. Tried an elemental diet against advice from my doctors because my weight was already so low. I took herbs (oil of oregano, garlic, enzymes). No one had anything that seemed to be stopping my weight loss.

Grasping for anyone who could help, I went to an endocrinologist. My thyroid, which every doctor is sure is my problem, has always been fine but there seemed to be something weird going on with my blood sugar. It seemed too low many times. This doctor had just been to a nutritional conference and decided to also test my levels of some vitamins. I was deficient in B1! Many people had checked my diet but no one had checked if I was absorbing anything I was eating. I started taking Pure Encapsulations 950 and felt better almost immediately.

Still, I have been stuck for years on a very limited diet. I am living with this SIBO thing. It seems I will be one of the people for whom the bacteria never leave completely. Recently, I was passing out in the lunch room at school and was found to be anemic. (Also on the second day of my period.) I had stopped taking my vitamins for a while because my SIBO seemed okay if I avoided certain foods. But I guess I will always have absorption issues. Taking iron causes the SIBO to flare and didn’t boost my energy like I expected. A month later I was found to be deficient in D3 as well. I am not taking hefty doses of many essential nutrients.

I’m just a mom, trying to feel better. Feeling a little guilty every time I wake up to my sweet seven year old asking me, “Mom, how do ya feel today?” Some days are bad but some days are really really good. I’m just trying to enjoy as many good days as I can.