Diving into the day refreshed and rested is, for many, the stuff dreams are made of. A painful early morning awakening is more often the reality with productivity put on hold until the pain is relieved. Greeting every day with aches and stiffness, one patient discovered that his pelvic/back pain was somewhat ameliorated by trips to the bathroom. However, with tests indicating this was not the source of the problem, the patient approached us for advice.

Q: For the past several months I have tended to wake early in the morning with stiffness and pain around my pelvic and my lower back area. I tend to have to go to the bathroom twice before breakfast and this seems to relieve the discomfort somewhat. I went to my GP before lockdown with this problem and she took some stool samples which came back normal. I just wonder if you could offer any suggestions of how to treat this issue and what the problem might be and if it is related to having Marfan Syndrome? I am 60 this week, and otherwise in good health.

A: This could be skeletal, or gut-related. If you have a curve in your back in the lumbar region (lower back) you may have some referred pain from your spine into your pelvic area. A spine X-ray may show us what is going on. You may have early-onset osteoarthritis, which affects 5% of people with Marfan syndrome. But common things being common, it is also likely you have Irritable Bowel Syndrome with symptoms of:

  • Constipation
  • Diverticulitis
  • Irritable bowel syndrome 

For constipation; fresh fruit and vegetables, avoid a lot of bread and rice, drink lots of water and cut down on tea and coffee. Purchase digestive enzymes from a health food shop and take one tablet a day with your largest meal. Also purchase live bacteria capsules and take one a day to populate the bowel with normal bacteria.

If this doesn't help, go back to your doctor for referral to a gastroenterologist. Sometimes the bowel can develop outpouchings in the wall where bacteria get trapped, and this is called diverticulitis. This infection needs antibiotic treatment.

The hospital doctor may wish to demonstrate these outpouchings with a barium enema test to confirm the diagnosis.

If you send me your address I will send you a pamphlet on Bowel Problems in Marfan syndrome, and our pamphlet Growing Older with Marfan Syndrome, a survey of 50 Marfan syndrome patients over the age of 50 years.

I hope this is helpful.

Marfan Trust, a CIO registered as a charity in England in Wales with charity number 1198847 at: c/o 24 Oakfield Lane, Keston, Kent, BR2 6BY. Contact us at [email protected] or by phone on + 44 (0)333 011 5256
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