Gastrointestinal

Swallowing difficulties, heartburn and diarrhoea or constipation can all plague people with scleroderma. Thankfully there are a number of measures you can take to manage these symptoms and maintain a greater level of comfort.

About the gut

The gastrointestinal tract allows intake, digestion and absorption of food and disposal of waste in the form of faeces.

The gut is involved in up to 90% of patients with systemic sclerosis. Any part of the gut can be affected from mouth to anus. Gut involvement can occur at any time in the course of the disease and it can be progressive, but not invariably so.

Food is propelled along the gut through contractions of the muscles in the gut wall. In systemic sclerosis, thickening of the gut wall and atrophy (thinning) of the muscles can stop this working efficiently. This can happen in any part of the gut, leading to a number of different symptoms.

Some ways to manage gut symptoms:

Dry mouth

A dry mouth can cause difficulties with tasting, chewing and swallowing foods.

  • Sip fluids regularly throughout the day and have a soft, moist diet.
  • Chew sugar-free gum and suck ice or sweets to help stimulate saliva.
  • Try sugar-free sharp lemon / lime / orange flavour squashes.
  • Artificial saliva is available if necessary from your chemist or doctor.

Difficulty swallowing

Muscles in your throat can slow down, causing swallowing difficulties; you may need a referral to a Speech and Language Therapist.

  • Allow plenty of time for meals.
  • Eat slowly and chew your food well.
  • Choose soft foods or purée your foods in a blender to help you swallow safely.
  • Avoid tough meats, stringy vegetables, nuts and seeds.
  • Add extra sauce/gravy /milk to your foods to make them a consistency that is more easily swallowed.
  • Fortify your foods if you begin to lose weight.

Heartburn (reflux)

  • Sit upright during and after meals.
  • Eat little and often.
  • Avoid very fatty/fried foods as they stay in the stomach longer.
  • Cut down on caffeine, alcohol and fizzy drinks.
  • Eat your main meal at lunch rather than in the evening.
  • Elevate the top end of your bed by six to eight inches.
  • Avoid eating and drinking before bed.

Gastroparesis (slow stomach emptying)

You may find that your stomach empties very slowly, causing you to feel full and uncomfortable.

  • Chew food well.
  • Sit upright during and after meals.
  • Eat little and often.
  • Avoid alcohol and fizzy drinks.
  • Softer foods (e.g. tender/puréed meat/fish, well cooked vegetables, eggs, dairy) and liquids (e.g. blended soups, smoothies, milky drinks) may be better tolerated.
  • Lower fibre foods may be better tolerated (e.g. choose white bread/pasta/rice over brown varieties, choose lower fibre breakfast cereals, peel fruit and avoid pips/pith, avoid nuts and seeds).
  • Avoid having solid meals with a lot of fat or protein as these empty more slowly.

Diarrhoea, constipation and bloating

Whatever your symptoms are, it is important to:

  • Eat meals regularly each day, taking time to sit down and relax while you eat.
  • Avoid skipping meals or leaving long gaps between meals.
  • Avoid chewing gum, fizzy drinks, caffeine and alcohol.

Diarrhoea (with or without alternating constipation):

  • Reduce fibre (choose white varieties of bread/pasta/rice/cereals instead of brown, avoid nuts and seeds).
  • Avoid skins, pips and pith from fruit and vegetables.
  • Avoid sorbitol (a sweetener found in sugar free sweets/drinks) as this has a laxative effect.
  • Avoid fatty, spicy and processed foods.

Diarrhoea with wind and bloating:

  • Limit fruit to three portions per day including fruit juice.

Constipation:

  • Gradually increase high fibre foods (choose whole grain breads/pasta/rice/cereals, nuts and seeds, fruit and vegetables).
  • Increase your fluid intake as you increase fibre (minimum eight glasses - approximately two litres - per day).

Constipation with wind and bloating:

  • Try oats or golden linseeds (1tbs per day) to help soften the stool. Ensure that fluid is taken with these to help them work.

Immobility or pain in hands

This can make preparing and cooking foods more difficult.

  • Buy pre-cut/ready packaged foods such as frozen or tinned fruit and vegetables or ready chopped re-sealable portions.
  • Cook more food than you need, then freeze the remaining food in portions to eat another day.
  • Try online shopping.
  • An occupational therapist can provide you with cooking and feeding aids to help maintain your independence.

Difficulty maintaining weight

Weight loss and poor appetite can be a common problem for people with scleroderma.

  • Try to eat little and often. Aim to have three smaller but regular meals with nutritious snacks in between.
  • Drink plenty of milk and milky drinks such as hot chocolate, malted drinks and milkshakes. Aim for at least one pint of whole (full cream or full fat) milk a day.
  • Fortify your meals and drinks to increase the energy and protein in each mouthful of food.

Examples of how to fortify your meals include:

  • Add four tablespoons of dried milk powder to one pint of full fat milk. Use in place of regular milk, in drinks, on cereal and in porridge and desserts.
  • Add butter/margarine/olive oil to savoury foods such as potato, vegetables, soups and sauces.
  • Sprinkle extra cheese over dishes.
  • Add double cream to both sweet and savoury foods and drinks such as porridge, milk used on cereal, coffee, custard, soups and sauces.
  • Add jam/honey/sugar to breakfast cereals, desserts and drinks.

Some people require oral nutritional supplements, prescribed by a doctor or dietician, if they continue to lose weight. You may need a referral on to a gastroenterologist if symptoms persist. Please please visit our nutrition page for more ideas on eating well.

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