An Update on My Digestive Dilemma

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by Kevin Schaefer |

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A few months ago, I wrote about my ongoing stomach issues and the impact this was having on my daily life. Despite the subject matter, I somehow managed to maintain a serious tone in the column. Truth be told, I was too frustrated and devoid of energy to make any jokes. 

Alas, digestive dilemmas are common among those of us with SMA. Factors such as sitting for prolonged periods, dehydration, and lack of exercise all contribute to difficulties with digestion and releasing bodily waste. Many in this community, both kids and adults, are on specialized diets and use supplements. 

I’m not one of these folks, but I knew I had to do something when I was dealing with diarrhea and constipation on a regular basis. I finally saw a gastroenterology specialist in March, right before that whole global health crisis thing went into full swing. 

Going into that appointment, I was cautiously optimistic. I was fatigued from sitting in the bathroom for hours at a time, and I desperately wanted to get to the root of the problem. Thankfully, the specialist listened intently to my spiel and spoke at length with me about all of my symptoms.

As it turns out, my issues were likely the result of bacteria buildup in my system. This specialist prescribed me an antibiotic to take for three weeks, along with stool softeners that I still take daily. I left that appointment with a sense of confidence and overall relief. There was no guarantee that these medications would work, but I was more than willing to try. 

It took some time for my body to adapt, but I did notice improvements pretty quickly. Shortly after starting these meds, I stopped getting up in the middle of the night to go to the bathroom. Instead, I was able to go steadily in the mornings and at night before I went to bed. When I went, I actually felt relieved after, and I wasn’t getting as many aches during the day. 

Take that, bloated digestive system!

I was ecstatic to finally make some progress in this department. For all my jokes, the reality is that managing digestive problems is one of the hardest challenges in life with SMA. I struggled in my work and social lives, and I was energy-depleted for days at a time. 

Today, I’m doing much better, but an issue like this doesn’t just disappear. I still have stomachaches, albeit much less frequently. Since starting these medications, I’ve only had four or five instances in which I had to go to the bathroom in the middle of the night. This is a huge improvement from doing this several times a week.

Also, my weekly aquatic therapy sessions are key to my physical, mental, and emotional health. Every time I’m in the pool stretching and moving my muscles, I feel great. Though I try to do exercises at home, nothing compares to the rejuvenation I experience in the water.

Digestive issues are nothing to be ashamed of, and they’re nothing to downplay, either. When I neglected to tell my longtime pulmonologist about my dilemma, he pretended to slap me. Looking back, I know I should’ve taken this matter more seriously from the start, instead of embracing the outdated “tough it out” mantra.

Life with SMA is always an adventure, and there’s no clear road map that comes with it. Still, taking care of yourself is always a top priority. Sometimes, this means talking with a poop specialist.


Note: SMA News Today 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 provider 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 SMA News Today, or its parent company, BioNews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.

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