Gastrointestinal Concerns for EDS Patients

Dec 23, 2021 | Samantha Campbell | @samanthacmaa | Comments (11)

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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renee1947 | @renee1947 | Dec 27, 2021

Looking forward to more information.

Colleen Young, Connect Director | @colleenyoung | Dec 27, 2021

In reply to @renee1947 "Looking forward to more information." + (show)

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

vmatulic1 | @vmatulic1 | Dec 30, 2021

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!

Dacre Knight | @drtknight1 | Jan 4, 2022

In reply to @vmatulic1 "Hi, I have gastroparesis and EDS. My GI doctor wants to inject botox into my stomach..." + (show)

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.

momcooker | @momcooker | Jun 5, 2023

Thank you for the information and we always want to get more. I have a milder case of EDS Type 3 but it's still painful with new things happening daily. For the past few years my lower abdomen distends during the day to make me actually look pregnant and my doctors have given me all the tests they can think of and come up with 'this is normal' for me. Well, I don't accept that and need information on how to combat this. Any ideas would be helpful. Thank you.

emo | @emo | Jun 6, 2023

In reply to @momcooker "Thank you for the information and we always want to get more. I have a milder..." + (show)

Hi there- I feel the same way; I also have distention, along with early satiety and stomach cramping, with completely normal testing, and I’m fed up with not being provided with strategies. I understand “functional” GI disorders aren’t life-threatening and don’t produce an abnormal test, but it can still have a really negative effect on quality of life.

I don’t know if this would help or make things worse because it would raise more questions, but you may want to look into abdomino-phrenic dyssynergia. After I was told about it, I found a book called, “The Bloated Belly Whisperer.” It’s a cheesy name, but it’s by a GI dietician who specializes in you guessed it—bloating. She created the book because she found bloating/distention were persistent symptoms patients were coming in with but not getting much relief. It might be helpful as a starting point to for a conversation with your doctor, and it introduces some strategies for various conditions.

I just wanted to share that in case it helps, and to say you’re not the only one. It’s beyond frustrating.

In this condition, the diaphragm contracts instead of expanding to accommodate what you consume, leading to distention. But there’s not much research or many providers aware of it. Treatment options are learning different breathing techniques, pelvic floor PT, GI psychology or gut-directed hypnotherapy, or low doses of neuromodulators (i.e. SSRIs or antidepressants). There is a gut-directed hypnotherapy app you could get on your own, called Nerva.

momcooker | @momcooker | Jun 7, 2023

In reply to @emo "Hi there- I feel the same way; I also have distention, along with early satiety and..." + (show)

Thank you so very much for your reply. I certainly appreciate it. The information sounds very interesting and perhaps promising and I will definitely look into it. As you know the most frustrating thing is being told by numerous physicians that this is 'normal' for me when I know it is not. I hope you have found a way to help yourself and I am looking forward to researching this. Thank you again.

emo | @emo | Jun 7, 2023

In reply to @momcooker "Thank you so very much for your reply. I certainly appreciate it. The information sounds very..." + (show)

You're welcome. Yes, what gets me so down is that it feels impossible for it to get better, but not because it is impossible (it's not like we've lost a limb that we can't get back), but because we either can't access treatment or there aren't providers who can or are able to try to figure something out to improve quality of life. Being told by physicians or others that GI difficulties are "normal" for whatever condition (in this case EDS, but I have POTS) is so frustrating, because it feels like a collective "shrug"! Ok, yes it's common and associated with these conditions, but now what can be done to improve it? I'm not even looking for a cure, but some improvement so the symptoms are not as limiting.

I'm trying to do my best with what I have access to; thankfully I found a pelvic PT willing to attempt to treat this, and I have a GI-trained dietician who's comfortable with Intuitive Eating (as opposed to severely restricted diets)--there are just long waits for appointments, and we're really just guessing on the best thing to do, but I'm grateful they're willing to try. All the best to you, too.

momcooker | @momcooker | Jun 21, 2023

In reply to @emo "You're welcome. Yes, what gets me so down is that it feels impossible for it to..." + (show)

Hi. You have such wonderful information. Supposedly my Drs. here in TN know EDS however they don't seem to know how to improve anything including, of course, the bloating and distention. I bought the book you suggested and will bring up also the Pelvic physiothereapy and also look for a GI trained diatician who knows EDS. That all makes great sense to me but it won't be easy finding them. For exercise, I found Staibity Flow which is yoga specially directed at HEDS and EDS. Instead of the focus on flexibility they focus on muscles and strength. I may try that since my routines usually end up hurting me. Well, good luck in your treatment and please keep me updated. I will do the same.