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Here Dr Hakim, Chief Medical Advisor describes both the common and more rare complications of bowel problems in Joint Hypermobility Syndrome (JHS) and Ehlers-Danlos Syndrome (EDS), their investigation, and treatment.
Common bowel problems in JHS and EDS
Over the last 5-10 years medical professionals have realized that bowel symptoms are very common in JHS and EDS-hypermobility type. Akin to the symptoms of Irritable Bowel Syndrome, JHS and EDS patients will very often describe symptoms of:
- Generalized abdominal pain,
- Heartburn (acid reflux from the stomach in to the gullet),
- Constipation, and
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 in Joint Hypermobility Syndrome and Ehlers-Danlos Syndrome
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 JHS or EDS – Hypermobility type.
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.
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 Barts Health NHS Trust, & Chief Medical Advisor, HMSA
Version 2 published 27th February 2014. Peer review by Dr A Fikree and Prof Q Aziz. Updated re IBS treatements July 2015. Date of Review February 2016.
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