Hsin-Jou Wang
(Physician, Family Medicine of NCKU Hospital)

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Some EB patients have blisters in their oral mucosa or esophagus that cause difficulty in eating, which leads to frequent consumption of soft or liquid diets. However, due to the lack of dietary fiber in the soft diet, it is easy to bring about chronic constipation. Chronic constipation can generate hard stool impaction, broken skin on the anus, or even intestinal obstruction, hence resulting in indigestion and poor appetite. This situation is most commonly seen in patients with recessive dystrophic blisters (RDEB).

 

According to past research statistics, more than half of RDEB patients suffer from constipation. Therefore, it is important to choose soft foods rich in dietary fiber. Both water-soluble and non-water-soluble dietary fiber in food can help prevent constipation since dietary fiber can soften the stool by absorbing and retaining water. Meanwhile, the short-chain fatty acid produced by the intestinal flora when digesting dietary fiber can also promote intestinal peristalsis and smooth excretion of feces. In addition, short-chain fatty acid can also promote intestinal probiotic growth, which is capable of helping the intestinal tract absorb minerals and reduce the survival of pathogenic bacteria. Dietary fiber benefits the human body in numerous ways indeed.

 

The recommended daily intake of dietary fiber currently in Taiwan is calculated based on the daily calorie consumption: 14 grams of dietary fiber for every thousand calories. In other words, adults need to consume 21-30 grams of dietary fiber per day, while children above one-year-old require around 16-40 grams of dietary fiber consumption per day, depending on their age. The approximate daily serving size for children can be calculated simply by “adding 15” to their age. The sources of dietary fiber are:

 

1. Whole-grains: Include at least 1/3 of unrefined whole-grain rhizomes when ingested (eg: brown rice, five-grain rice, etc.)

2. Fruits and Vegetables: Try to choose dark vegetables (including red and yellow) as 1/3 of the daily fruit-and-vegetable intake.

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Since dietary fiber is not affected by cooking time or temperature, hard ingredients can be stewed or cut into smaller pieces for easier consumption. If one has difficulty eating, cooking can be processed with a food processor for better texture. One can also consume dietary fiber nutritional supplements to increase intake. In addition to taking adequate fiber, it is also essential to ensure sufficient daily water supplements. Sufficient water and adequate dietary fiber intake can prevent constipation effectively. The daily basic water intake is about 30ml of water per kilogram of body weight, an adult of 50 kg will then requires at least 1500ml of water intake. If there are any questions regarding nutritional supplements, you are more than welcomed to consult a professional nutritionist.

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Reference:​

1. Debra International: preventative nutrition care guideline for managing constipation in EB

2. “Taiwanese Dietary Nutrient Reference Intakes” Eighth Edition

3. Food and Drug Administration. Taiwan Food Ingredient Database. 2017 Edition

4. Dong's Foundation. Food and Nutrition Special Zone (2012). Eat Whole Grain, Care for Health. Leaflet.