Gastrointestinal Concerns for EDS Patients

Dec 23, 2021 | Samantha Campbell | @samanthacmaa | Comments (4)

Bloating and Distension

Many patients with EDS report symptoms of being gassy, bloated or distended (these terms are all defined in the section below). These are often temporary sensations that occur after eating, go away on their own without any treatment, and do not require a visit to a health care professional.  For some EDS patients, however, abdominal bloating and distension are more chronic in nature, are quite bothersome and can negatively affect life on a daily basis.

Definition and Common Symptoms

Bloating is a sensation of gassiness (“I feel gassy”), trapped gas, or a feeling of being distended (this means that your abdomen or belly appears swollen) although there is no obvious visible distension or swelling of the abdomen. Patients frequently also describe a sense of fullness or pressure in the upper abdomen above the umbilicus (the belly button).  Abdominal distension describes a measurable change in the size of the abdomen.  Patients commonly describe how their abdomen enlarges so that they look “like a balloon” or look “like I’m pregnant.” Patients frequently report that bloating and distension worsen after eating and continue to worsen during the course of the day.  This is normal, to some degree, as specialized testing has shown that the size of the abdomen increases during the day in healthy volunteers, and then returns to baseline levels overnight.  Abdominal bloating and distension can occur as two completely separate processes although they frequently occur together. The diagnosis of bloating and distension is outlined below but generally involves taking a careful history, performing a physical examination, ordering simple laboratory tests, and using published medical guidelines.

How common is this problem?

Bloating is a very common problem. One survey of households in the United States found that 31% of adults – nearly one in three - had symptoms of gas and bloating.  A second large study of over 2,500 US adults, performed at a different time and using somewhat different questions, found that 16% - which is one in six adults – had symptoms of bloating. Bloating and distension can occur on their own without being associated with any other medical condition. However, these symptoms are more common in EDS patients and in patients who have irritable bowel syndrome (IBS), chronic constipation, gastroparesis (slow stomach emptying), celiac disease and dyspepsia. In general women are somewhat more likely to report symptoms of bloating than men, and patients who have problems with constipation are more likely to report symptoms of gas and bloating than are patients who have symptoms of chronic diarrhea. In our upcoming posts we will discuss more about causes, and treatments for bloating, so stay tuned!

Author: Brian Lacy, MD, PhD

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Looking forward to more information.

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@renee1947

Looking forward to more information.

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Welcome, Renee. Do you have Ehlers-Danlos Syndrome?

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Hi, I have gastroparesis and EDS. My GI doctor wants to inject botox into my stomach to help with motility. We have tried multiple diet changes and medications with no success. Is there anything I should be concerned about in regards to proceeding with the botox treatment? I know that it may or may not work so I am more concerned about it possibly doing more harm. Thank you!

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@vmatulic1

Hi, I have gastroparesis and EDS. My GI doctor wants to inject botox into my stomach to help with motility. We have tried multiple diet changes and medications with no success. Is there anything I should be concerned about in regards to proceeding with the botox treatment? I know that it may or may not work so I am more concerned about it possibly doing more harm. Thank you!

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Great question. Botox is usually safe and effective for EDS/GP with negligible side effects. But it is not completely without risks, so it is appropriate to be concerned. Having said that, whether this is worth the try will be dependent on potential benefit and what other types of treatment have already been used. This can and should be discussed with your GI doctor.

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