The gastrointestinal problems of scleroderma are always with me

GI symptoms are my constant unwanted companion by Tomisa Starr | December 18, 2024

​I think of scleroderma as my constant companion — one that tries to keep me from having a life of my own. Whenever I want to do anything outside of my home or lead a productive life, scleroderma always seems to hold me back. It’s like the friend I can’t take anywhere because they’re always doing things to embarrass me.

Of all the problems caused by my scleroderma, gastrointestinal (GI) issues are the worst. These are my most embarrassing and painful symptoms.
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Stomach noises may be embarrassing, but they’re a sign that the GI tract is working as it should. These sounds mean that the food we’ve eaten is being propelled through our digestive system and is on its way to the intestines. In the past, I’d occasionally hear my stomach churning whenever I was especially hungry, and I could hear my intestines working to expel gas from my body.
If there’s anything worse than the dismay most people experience when their stomach makes embarrassing noises, it’s when those noises suddenly stop and you realize that something is wrong.

​How scleroderma causes gastrointestinal problems
Scleroderma replaces muscles and nerves in the walls of GI organs with scar tissue. That results in a loss of function in these organs, which can lead to problems such as nausea, bloating, abdominal cramping, gastroesophageal reflux disease (GERD), and food getting stuck.

Following are some of the GI symptoms I experience:

GERD: My GERD feels like it’s gotten a lot worse over time. I had my first episode of reflux around 1995. It doesn’t always hurt when stomach acid comes up into my esophagus and throat, but at the times when it does, it’s extremely painful.

One night, not long after I was diagnosed in the ’90s, I had an attack of reflux that burned my throat. The stomach acid came up all the way into my mouth, and it felt as though I’d drunk acid. Desperate for relief from the pain, I drank some leftover lidocaine solution that I had from the dentist. (I wouldn’t recommend this choice to others.)

At other times, the painful stomach acid has gone into my lungs, and I’ve struggled to cough it up.

Early satiety: Bloating and feeling full after eating only a little bit of food are known as early satiety. It can be caused by conditions such as GERD or gastroparesis, which causes delayed emptying of the stomach’s contents. Both may be symptoms of scleroderma.

Malabsorption and diarrhea: Atrophy of the smooth muscle layer in GI organs can inhibit peristalsis, which moves food through the digestive process. Dysfunction of the small intestine can lead to small intestinal bacterial overgrowth, malabsorption (which can result in weight loss and malnutrition), diarrhea, and constipation. I have one nutritional drink a day to help with this problem.

Constipation: When scleroderma affects the functioning of the large intestine, waste material (feces) can become stuck. As a result, I experience constipation.

Fecal incontinence: I started having instances of fecal incontinence around 1997 and continue to experience this problem today. I never know when these accidents will occur because I can’t feel them coming on. I’ve read that problems with fecal incontinence are underreported because many patients are embarrassed to talk about it.

To help with this issue, I take stool softeners daily. But I still experience fecal incontinence several days a week.
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The gastrointestinal problems caused by scleroderma have narrowed my world and made it smaller. I can’t take this companion anywhere — and it won’t leave.