Travelling with a stoma or pouch

Start by naming the real problem. Apprehension about travel after ileostomy surgery is largely a hangover from trying to travel during active inflammatory bowel disease — the thing the surgery was designed to relieve. We remember knowing the location of every toilet on our routes. We forget that we did not worry that way before the first attack.

Getting started

• In the early days after surgery, start with short trips away from home while you build confidence.
• Many members find a complete change of bag just before departure gives maximum security against leaks.
• Take adequate spare supplies. Some suggest twice what you would normally use — but what matters more is not forgetting anything, and not letting supplies go astray in transit.
• Make a reminder list of everything you use for a normal change — bags, flanges, skin protective wipes, disposal bags — and use it as a packing check list.
• Carry supplies in both hand and hold luggage. Hand luggage can also go astray.

Flying

Check restrictions on liquids and sharp instruments in hand luggage — you will need bags cut to size, as scissors are definitely not allowed in the cabin. Many UK airports have introduced the Hidden Disability Lanyard, which lets staff identify anyone who may need additional support and helps security staff make reasonable adjustments. Empty your bag in the departure lounge before boarding, and on longer flights beat the post-meal queue by going before the meal.

Heat, water and diarrhoea

Observe manufacturers’ storage guidelines, especially in hot climates — often the bathroom is the coolest place, and a cooler bag works too. Do not leave equipment in the car boot in hot weather; it is the hottest place in the car. If you do not trust the local water, buy bottled or boil and cool it, and avoid ice cubes and foods washed in local water. Too much alcohol accelerates dehydration, and coffee is a diuretic that can deplete reserves.

You are just as likely as anyone else to get travellers’ diarrhoea. Loperamide is available over the counter, and taken at the first sign can usually nip it in the bud; take a rehydration solution too, and seek medical help if diarrhoea continues for more than 24 hours. On salt there is a figure: anyone with an ileostomy can add up to one extra teaspoonful of salt per day, unless advised otherwise by their GP, because that is the average amount lost per day through a normally functioning ileostomy.

Two documents worth knowing about. The Ileostomy & Internal Pouch Association produces a travel certificate explaining an ileostomy or ileo-anal pouch in multiple languages, which helps at customs. And on insurance the point is emphatic — an ileostomy or internal pouch is a pre-existing condition, so check with the company issuing the policy at the outset that it is not excluded, and be sure you are not travelling against medical advice, which may require a letter from your GP.