How Chronic Idiopathic Constipation Taught Me to Advocate for Myself

How Chronic Idiopathic Constipation Taught Me to Advocate for Myself and Speak Up

Kati was diagnosed with chronic idiopathic constipation (CIC) after experiencing bloating, abdominal discomfort, and inability to have a complete bowel movement. Read her story.

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This post was created with support from Takeda.

One day my husband commented on how long I was staying in the bathroom and asked if everything was alright. That's when I realized it wasn't. I'd never had issues with my digestive system or moving my bowels before, but for weeks I'd been playing solitaire on my phone to pass the time while I tried to go.

As my physical symptoms began to affect my emotions, I also found myself in a constant state of anxiety. Soon, the bloating, abdominal discomfort, pain and inability to empty my system for days became unbearable.

Learn more about Chronic Idiopathic Constipation here.

Eventually, I found a gastroenterologist who diagnosed me with chronic idiopathic constipation (CIC), a medical condition characterized by infrequent or incomplete bowel movements over a long time. Today—thanks to an excellent medical team and my own perseverance—things are much better, but it hasn't been an easy journey.

When the first treatments I tried weren't working, my self-care became increasingly challenging. For me, CIC affected everything from teaching my students to my relationships. Most people didn't understand and had never heard of CIC, even though it's a common condition. Because it was a foreign concept, accepting that I had a medical condition didn't come naturally for them—and, let's be frank—bowel movements aren't the best fodder for conversation by the copy machine!

Since nobody understood and so few people wanted to listen, I felt a lack of concern that left me feeling alone and frustrated to where I began to question my self-worth. I yearned for the old Kati, convinced the current version would never be as great as the original.

At first, I felt like I had lost myself and the freedom to participate in activities I loved because I had to plan everything around my condition. I felt like I was missing out on the things that mattered most to me. I lost the ability to be spontaneous, and I became anxious in public places, if I didn't know where the closest bathroom was.

I knew I needed to find strategies that would help me cope with my new normal. I had to focus on becoming a functional person again. That's when I decided that putting my life on pause forever wasn't an option. I decided not to give up.

I assembled an excellent medical team that I could trust and to whom I've held tightly ever since. My health care providers include a primary care physician and a gastroenterologist who is a motility specialist, which means he has special training in disorders involving movements of muscles within the digestive system.

When functioning properly, the colon squeezes in coordinated movements to mix digested food and push it through. While "idiopathic" means that the exact cause is not known, it's believed that these colon muscle contractions may not happen often enough in people with CIC.

Maybe it's the professor in me, but I've always believed that knowledge is power, and that communication is key to translating that power into results. I'm now an active member of my own health care team and work with my health care providers to research my condition and different treatment options.

Initially, I was embarrassed to share the details of what I was experiencing when my treatments weren't helping. It took me a while to get over the taboo of talking about bowel movements, but I soon realized that for things to get better, I had to tell my health care providers about my ongoing symptoms that were affecting my life. It's been challenging, but my health and dignity are worth it.

Today, working together with my health care team, I've found a treatment approach that works for me. I openly share what I'm going through with my immediate family members, who are extremely supportive and listen to me willingly. I'm also involved in several online support groups.

I am starting to appreciate that while I may not be able to change the fact that I have CIC, there are a lot of things that I can do. I can reframe my perspective and reshape my attitude. I can research. I can advocate for myself. I can reduce negative self-talk. I can support others facing similar struggles. I can encourage them not to give up if what they've tried so far isn't working and, instead, motivate them to tell their health care providers what they're going through and ask if there's something different they can try. I can share my story to help increase knowledge about this seldom-talked-about condition.

I realize that everyone's experience may be different, but for me, having CIC means I have good days and not so good ones, but how I choose to live them is up to me. I have started to calculate what I call my "usable hours," and then I pace myself so that I can partake in activities that give me joy each day.

I am eternally grateful to my medical team who helped get me to a place where I have more usable hours again. I'm also incredibly proud of myself because I know that I wouldn't have gotten here without educating myself, advocating for my needs and continually growing as a person throughout the process.

For more information about CIC, visit www.TheMuscleWithin.com.

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