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Bowel in JHS & EDS

Posted By Alan Hakim, June 9, 2013

This article is written for patients, the public, and health professionals.

Dr Hakim, Chief Medical Advisor, describes both the common and more rare complications of bowel problems in hypermobility-related disorders, their investigation, and treatment.

Common bowel problems in JHS and EDS

Over the last 10-15 years medical professionals have realized that bowel symptoms are very common in hypermobility-related disorders, and in particular the Hypermobile variant of Ehlers-Danlos syndrome (hEDS). Akin to the symptoms of Irritable Bowel Syndrome, patients will very often describe symptoms of:

  • Generalized abdominal pain,
  • Bloating,
  • Nausea,
  • Heartburn (acid reflux from the stomach in to the gullet),
  • Vomiting,
  • Constipation, and
  • Diarrhoea.

Hernias (bowel pushing through the abdominal wall) are common. Perhaps most familiar to the public is the hiatus hernia – part of the stomach squeezes into the chest through an opening in the diaphragm. This can cause symptoms of pain, heartburn, fullness and nausea and vomiting. A hernia might also be found, for example, in the midline of the abdominal wall, around the belly button, or at the groin. Most often they present as a tender lump that might also expand on straining or coughing.

Up to 10-15% of individuals with EDS also describe a sense of urgency when needing to pass faeces; haemorrhoids (piles) or skin tears with bleeding; and may also be incontinent, soiling themselves due to the inability to control when they pass faeces.

Medication side effects

Individuals who take painkillers may get bowel side effects from these too. The most common side effects are:

  • Heartburn and Nausea (e.g., from Non-Steroidal Anti-inflammatory Drugs (NSAIDS))
  • Ulcers and bleeding (e.g., from NSAIDs)
  • Constipation (e.g., from Codeine or Tramadol)

Less common and rare bowel problems

Occasionally the muscles of the pelvic floor are so weak, and the tissues holding the bowel so stretchy in an individual that the end of the bowel literally falls out of the body. This is called a prolapse. It is often possible, once taught to push the bowel back up and to use a ring pessary support. Sometimes the problem is so painful and the tissues so inflamed that it becomes an emergency and requires medical attention.

Very rarely, and seen mainly in the Vascular form and occasionally in the Classical form of EDS, the bowel may be very dilated, it may split (perforate), become blocked as it folds in on itself (obstruction), or it may spontaneously bleed. These are surgical emergencies that require immediate attention.

These rare problems are not seen in HSD or hEDS.

Tests and Treatment

In this section if you click on the highlighted word it will take you to information on other safe websites.

There are lots of ways to help bowel symptoms. For the majority of individuals the self-management and medical treatments used to manage Irritable Bowel Syndrome will work. Types of treatments used in IBS for which there is evidence of effectiveness include:

Exercise, Pelvic Floor Biofeedback, CBT and Hypnotherapy, Probiotics, Herbal remedies (Peppermint Oil, STW5 (Iberogort), Padma Lax), Medications [serotonin antagonists (e.g. Ondansteron), 5HT4 agonists (e.g. Prucalopride), and Guanylate Cyclase C agonists (Linaclotide)], and exclusion diets.

Exclusion diets

A doctor might recommend an ‘exclusion diet’ as a test for an intolerance to food products and also as a treatment. If the stimulant(s) causing the intolernce is removed the irritable bowel-like symptoms may settle.

The three most common exclusion diets that may be helpful are described below. If you click on the highlighted word it will take you information on other safe websites.

  • Gluten free diet. There is no evidence to suggest that allergy to gluten or the presence of Coeliac disease is more common in JHS/EDS than the general population.  Your doctor can do a blood test to exclude Coeliac disease.
  • Lactose free diet. A person may find that they are intolerant of dairy products. There are several tests for lactose intolerance that your doctor might do. If not able to take dairy products it is important to find other foods rich in Calcium and Vitamin D, to maintain health bones.
  • A low-FODMAP diet. These are sugars that trigger irritable bowel. Lots of information about what they are and what foods they are in can be found at the American website IFFGD, and a list of low-FODMAP foods is provided in a printable version by clicking HERE.

It is always sensible to maintain a healthy balanced diet and to keep hydrated by drink sufficiently and often. In particular, the FODMAP diet is quite restrictive and you may want to seek a nutritionists / dieticians advice.

It is noted here that a few individuals also find they have intolerance to very specific things. Two that seem to be a concern (authors clinical experience) are an intolerance to citric acid (used in a number of food products – read the label), and the binding products used to constitute tablets (here, individuals may be helped by trying a liquid, patch, cream, or injectable version of the medication (if available)).


Your doctor might prescribe medications that help with reducing:

  • Stomach acidity
  • Nausea and Vomiting,
  • Colic (spasm), and
  • Constipation or Diarrhoea


A gastroenterologist may wish to do a camera study of the upper or lower bowel (endoscopy or colonoscopy) and during this may take a biopsy of the bowel lining to examine in more detail for inflammation and other changes. Other common investigations include imaging of the bowel and abdominal organs with either ultrasound or CT scanning.


There are a number of relatively simple things that we can all try to reduce stomach acidity, bloating, pain and constipation.

If these do not work then a doctor may be able to assist you with medications and help you determine if you have a food allergy or underlying condition such as Coeliac disease.

Sometimes it is necessary to do further tests and a Gastroenterologist is the key specialist here; these tests looking to see if there is anything wrong with either the anatomy or the function of the bowel.


Dr Alan J Hakim MA FRCP.

Consultant Rheumatologist & Acute Physician. Chief Medical Advisor and Trustee, HMSA

V.3. Published March 2017. Date of review March 2018.


Arunkalaivanan AS, Morrison A, Jha S, Blann A. Prevalence of urinary and faecal incontinence among female members of the Hypermobility Syndrome Association (HMSA). J Obstet Gynaecol. 2009 Feb;29(2):126-8.

Beckers AB, Keszthelyi D, Fikree A, Vork L, Masclee A, Farmer AD, Aziz Q. Gastrointestinal disorders in joint hypermobility syndrome/Ehlers-Danlos syndrome hypermobility type: a review for the gastroenterologist. Neurogastroenterol Motil. 2017 Jan 13. doi: 10.1111/nmo.13013. [Epub ahead of print]

Fikree A, Chelimsky G, Collins H, Kovacic K, Aziz Q. 2017. Gastrointestinal involvement in the Ehlers–Danlos syndromes. Am J Med Genet Part C Semin Med Genet 175C:181–187.

Fikree A, Grahame R, Aktar R, Farmer AD, Hakim AJ, Morris JK, Knowles CH, Aziz Q. A Prospective Evaluation of Undiagnosed Joint Hypermobility Syndrome in Patients With Gastrointestinal Symptoms. Clin Gastroenterol Hepatol. 2014 Jan 16. pii: S1542-3565(14)00049-4.

Hakim AJ, Grahame R. Non-musculoskeletal symptoms in joint hypermobility syndrome. Indirect evidence for autonomic dysfunction? Rheumatology (Oxford). 2004 Sep;43(9):1194-5.

Hallan M, Saito YA. Irritable bowel syndrome: new and emerging treatments. BMJ 2015 Jun 18;350:h1622. doi: 10.1136/bmj.h1622.

Mohammed SD, Lunniss PJ, Zarate N, Farmer AD, Grahame R, Aziz Q, Scott SM. Joint hypermobility and rectal evacuatory dysfunction: an etiological link in abnormal connective tissue? Neurogastroenterol Motil. 2010 Oct; 22(10): 1085-e283.

Zarate N, Farmer AD, Grahame R, Mohammed SD, Knowles CH, Scott SM, Aziz Q. Unexplained gastrointestinal symptoms and joint hypermobility: is connective tissue the missing link? Neurogastroenterol Motil. 2010 Mar;22(3):252-e78.

Zeitoun JD, Lefèvre JH, de Parades V, Séjourné C, Sobhani I, Coffin B, Hamonet C. Functional digestive symptoms and quality of life in patients with ehlers-danlos syndromes: results of a national cohort study on 134 patients. PLoS One. 2013 Nov 22;8(11):e80321. doi: 10.1371/journal.pone.0080321. eCollection 2013.

The information provided by the HMSA should not take the place of advice and guidance from your own health-care providers. Material in this site is provided for educational and informational purposes only. Be sure to check with your doctor before making any changes in your treatment plan. Articles were last reviewed by our Medical Advisors as being correct and up to date on 5th June 2004.

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