The Strange Gastrointestinal Sounds of Scleroderma
I remember it like it was yesterday. The classroom was quiet. My stomach suddenly decided it was angry with me for skipping lunch. The grumbling gastrointestinal noises were like thunder to my easily embarrassed self-esteem.
Acting nonchalant, I looked around to see if anyone had noticed, hoping it was only loud inside my head. To my right, I saw the boy I had a crush on giggling and glancing in my direction. Instantly mortified!
Ah, to be young and healthy again, when the only embarrassing sounds coming from my body were normal bodily functions.
I’m eternally grateful my disease didn’t manifest itself until after pregnancy and childbirth, which somehow helped me feel at ease with strange bodily functions. Or, perhaps I’ve just aged enough to know there are more important things to worry about.
Another scleroderma surprise
A third of scleroderma patients have esophagus issues, and I’m no exception. I have zero muscle function in my esophagus. It’s just a scarred, nonfunctioning tube that makes a lot of interesting gastrointestinal sounds that leave me bashfully trying to cover up noises that healthy people don’t make.
After I eat or drink anything, I have to stretch my torso upwards. With gravity being the only force working in my favor, lengthening my torso helps to straighten out the track liquids and solids must pass through to enter my stomach.
But let’s remember I’m human, and I sometimes forget to stretch after each sip or bite. Things immediately begin piling up like a mound of garbage at a dumpsite. If I’m lucky, I’ll remember before it’s too late and slowly sit up straight. That releases the tiny clogged drain, and a soft gurgle will signal that everything has cleared and entered the stomach.
It’s the times when I forget to sit up straight that I have problems, like when I’m distracted by a funny conversation, my body relaxes, and my posture follows the contour of the chair I’m sitting in. I will continue my slow eating, blissfully unaware that I’m about to make a whole room of unsuspecting people very uncomfortable. All it takes is to straighten up slightly and reach for my water, and just like that, the dam has been breached!
It starts with the sound of bubbles gurgling at the bottom of my rib cage and slowly making their way up the esophagus. The rumbles increase in intensity, as if my body is giving everyone time to figure out who’s making the ruckus. By now, all eyes are on me. Even if it’s a noisy restaurant, it’s the kind of sound that people notice.
There’s nothing that can be done, and I know it. Even if I clench my lips tightly, there’s no keeping the volcano of embarrassment from escaping. The pressure cooker is about to explode!
By the time the growing balls of air are ready to escape, they’ve built up the momentum of an avalanche. I close my eyes and brace myself for the inevitable.
I’m rare with rare sounds
It’s difficult to describe the sound that emerges from my clogged stomach drain. (Even the sounds my body makes are rare.) It’s not a belch. It more closely resembles a toilet getting unclogged after being plunged — only it’s coming from my mouth. In public. And there’s no way to downplay, control, or lessen the severity. (Insert red face here.)
And what do you say after it’s all out in the open? “Excuse me” doesn’t cut it. Strangers look at me as if they’re waiting for an explanation. They appear confused and bewildered. Like they’ve just encountered a newly discovered wild animal. They want answers!
The teenage Lisa would’ve slid under her desk and hid until the bell rang. Then she would have figured out a way to be home-schooled for the rest of her life. Luckily, the grown-up in me has adopted a more nonchalant response. I simply laugh and act as if I’m just as surprised as everybody else, and say excuse me.
I’m fortunate that my husband has a third-grade sense of humor. He just giggles and expresses his jealousy for my new talent. My teenage daughters are a different story. They look down at their plates and begin planning their escape.
When the body doesn’t function quite right, it certainly makes for interesting encounters in public. I do my best to remember to sit up straight at mealtimes. While I can’t avoid every mortifying moment, I can choose to laugh if my body doesn’t play nice. I’m doing my best, so I deserve a bit of leniency.
Does anyone else have a fun way to respond to situations like these? Please share in the comments below.
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Note: Scleroderma 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 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 Scleroderma News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to scleroderma.
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Comments
Mommy
You have away, of making me laugh in spite of my anguish over this disease!
You have come a long way dealing with all this. I find you sometimes almost beyond belief! Your positive attitude and foward looking thinking, as well as your ability to use this ugly thing that doesn’t deserve a name, to help others ( and me) understand better is a blessing. We love you.
Margitta Hapke
Hi Lisa, just yesterday I had a motility function test, that confirmed what I have known for a long time. My esophagus shows no no action, end stage the doc said. I am used to the food not going down, sometimes parts of dinner are still there at breakfast time. Yes and the sounds ...... certainly even neighbors must have heard them !
Even my husband gives me the occasional ,,you poor thing, it must hurt,. How could I ever eat anywhere but at home?
I feel for my family! A couple times my daughter said 'Mum'! It hurts having to be such a burden ... Lisa you are in thoughts very often, I admire your strengths. We must keep going as long as possible. Best wishes to you and thank you for another great article.
Sandra Avery
When this happens to me the food comes up. It gets blocked about mid-way down, and then has to come up. I grab a handful of napkins and start running to the restroom. I had anti-reflux surgery in 2007 and was much better for about five years. When I started having trouble again, my Gastro started stretching my esophagus. It helped for about a year and then I would have it stretched again. This last time I had it done it did not help. My Dr. said that he would stretch again if I wanted, but I decided to try to tough it out for awhile. I was diagnosed with reflux in 2001 and scleroderma and sjogrens in 2015.
Iona (Tobey) J Schwartz
Hi Lisa,
I'm curious, since you have gastrointestinal involvement, do you have gastropiresis? Also, do you have to deal with diarrhea (taboo subject :( ).
Sharon Kolowitz
Thank you for the information. You are spot on. I have problems also with spinal cord injury that has also created these symptoms. Physically activity can bring on that insane burping, hiccupping, and vomiting, for example, doing physically activity with my arms, or getting up too fast, etc. . Neuro doesn't have a clue. My spinal cord has had too many hits to it over the years.
Marita Nelson
It is a very hard thing to eat in public. I pull a few tricks though, I always ask for a box in the beginning of the dinner and put half of my dinner in it and put it aside. Then I play around with what's on my plate and a lot of people at the table don't seem to notice as much. I still am the last one to clear my plate but they won't question me about since it looks like we kind of finished at the same time. Also I can run to the restroom without telling them about my problem and throw up. I have thrown up so many years now that I have learned to do it when I need to clear my esophagus.
Eloise O'Brien
I was diagnosed with SSc about 2 years ago. I believe I had it much longer. I have had osteoarthritis since I was in my 20's. I have had Raynaud's in fingers & toes for so many years I cannot remember. My ANA hit mid way years ago yet no physician questioned. Two years ago it hit the top of the chart. I changed PC & found an Arthritis Specialist. After further testing SSc was the Dx. I am grateful for an answer. My PC, Arthritis & now Cardio have been excellent with my care coordination. I feel I am just beginning some of the esophagus issues I finished reading about. I am not a big eater & mostly veg & fruit. I discovered years ago that beef aggravated my arthritis. I have not had a bite of beef since 1990. I do not like pork & can't say when the last time was I had eaten any. I don't care for fried food. I mostly eat chicken, fish, veg & fruit. Not sure any of this will slow the progression or help but it seems to work for me. God Bless all who are dealing with this.