How I Manage Gut Health as a Neuromyelitis Optica Patient

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by Jennifer van Amerom |

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During my transverse myelitis attack in 2009, I lost feeling and control in the lower half of my body. My medical team determined that I needed a spinal tap to reduce the fluid buildup. The procedure was done right in my hospital room, and the only condition was that I couldn’t move from the bed.

As doctors conducted the spinal tap, my cellphone rang from my patient tray table.

“Please, can you pick it up?” I begged the nursing staff. I was met with a stern no, but I insisted. “Please, I need to take this call.” I had no idea who was on the other line, but I needed a distraction from my brutal reality.

“Hello!” a cheery voice said. “I’m looking for Jennifer. Her gown has arrived from Spain!” My fiancé, Mike, and I were three months out from our destination wedding, and the designer gown I’d special ordered had finally arrived. Over speakerphone, I booked my fitting for two weeks later. The pleasant voice had no idea there was a giant needle jammed into my spine.

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That gown would be the bane of my existence. While I had ordered it two sizes larger, after steroid treatment, new medications, and lack of exercise, it no longer fit.

After my hospital discharge, my mother-in-law and I shopped for a new gown off the rack. I tucked the first gown, nicknamed “my Spanish disaster,” deep into our closet for the next 10 years.

Gut health challenges are unavoidable

One of the most startling effects of neuromyelitis optica (NMO) is the constant weight changes that happen due to symptoms and treatments.

There’s a lot of confusion about gut health and how it affects our overall well-being. Good gut health means having the right balance of good bacteria and other microbes in our digestive tract. The levels of bacteria in our gut can affect our weight, so when our body is under attack, the number on the scale may fluctuate.

Some believe that gut health may impact or even cause several autoimmune disorders, though no study has definitively found this to be true. One small study, conducted by a team at the University of California, San Francisco, and published in the journal Annals of Neurology in 2016, identified a larger amount of Clostridium perfringens bacteria in NMO patients. But more research is needed to understand the possible relationship between gut health and NMO.

Many NMO treatments can also affect our gut health because they upset the balance of gut bacteria, resulting in side effects such as weight fluctuations, nausea, and loss of appetite.

Ways to improve gut health

I had never heard of probiotic yogurt until I was trying to combat weight gain caused by steroids. I was so bloated I looked five months pregnant. Random strangers congratulated me, and it was easier to say thank you than to explain how sick I was.

I was told to consume foods such as sauerkraut, miso soup, almonds, sourdough bread, bananas, and olive oil. These contain probiotics and other healthy bacteria that can improve gut health and help us lose weight. Over-the-counter probiotic supplements are also available.

Exercise can also be beneficial, as it can improve gut health as well as blood flow and mental health. My favorite exercise for good gut health is yoga, especially Cat Pose and Downward Dog Pose. Gently stretching the abdominal region encourages digestion.

Setting good gut health goals

Last year, Mike surprised me with a 10-year anniversary vow renewal. He knew how much I resented the gown I’d tucked away and wanted to give me the chance to have the beach wedding we originally wanted.

But life isn’t fair. Neither is this disease.

improve gut health | Neuromyelitis News | Jennifer and her husband, Mike, hold hands with their daughter, Sophie, in front of a lake. Jennifer is wearing a bridal gown and holding a bouquet of flowers, while Mike is wearing a suit.

Jennifer and Mike celebrate their 10-year vow renewal in 2021 with their daughter, Sophie, and their pug, Magnus. (Courtesy of Jennifer van Amerom)

Three months before our vow renewal, I suffered a major attack — my first in over 10 years. I was devastated because I knew I’d need to start a regimen of steroids. My hopes of taking wedding photos without the dreaded “moon face” slipped away.

This time, though, I was prepared. I ate better, exercised more, and drank a lot of water. I took care of my gut health as best I could. It’s easier to take care of yourself when you have a goal, and my Spanish disaster ended up becoming one of my triumphs.

Managing disease is a multifaceted process. We need good sleep, good nutrition, minimal stress, the right treatment plan, and support from family and friends, and we must always consider what’s going on inside our bodies.


Note: Neuromyelitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health providers with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Neuromyelitis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to neuromyelitis optica spectrum disorder (NMOSD).