Traveling With A Stoma!
We are going to the Dominican Republic this Easter. We are all so desperate for this family holiday, the last 3 years have been really tough on us as a family. My daughter who is now 15, was diagnosed with Crohn’s disease back in October 2015, it’s been a hell of a journey if you haven’t already read my stories of this awful illness then you can read it all here.
My daughter’s Crohn’s disease was so severe that last year the doctors at Birmingham Children’s hospital decided that the only way to save my daughter was to perform an Ileostomy (a stoma constructed by bringing the end or loop of the small intestine out onto the surface of the skin). The operation went well and although it’s not been easy for her or us living with a Stoma, it’s a far cry from seeing her in absolute agony and suffering from her Crohn’s disease. My daughter now has to wear a Stoma bag to catch all the waste her body makes. This is to allow the inflammation that’s inside her lower ileum time to heal. Hopefully, my daughter will be having a reversal operation this year, once the doctors feel that it is safe to do so.
Until that day we have had to try to live our lives as normal as possible and we are all so desperate for a holiday. We did go to Cornwall for a week after her operation last year. We were advised to start with a short UK break, to begin with. This was in case she had any problems with her Stoma and needed to go into hospital. The Stoma takes time to take it’s shape and can sometimes stop working properly after an operation. If this happened we could get her to the hospital for help. We checked with our doctors and we were advised of the best hospital to use in Cornwall and we were assured our daughter would get the correct help if needed.
We went well prepared, we took plenty of the correct supplies with us along with lots of telephone numbers for emergencies. We saved the details of the local hospital we had been advised to use and had it mapped out with the quickest route. We stayed in a farmhouse with excellent toilet facilities and we took a disabled toilet key and pass that we were given from our Stoma nurse and all our doctor's notes. We had met with my daughter’s Stoma nurse before we had arranged our holiday and she so kindly helped us go well prepared. My daughter’s Stoma nurse sat with my daughter and talked about all of my daughter’s concerns about traveling with her Stoma and this helped her feel better about going.
We did have a lovely holiday and managed to cope with her Stoma but there were a few things that happened that I want to share. The toilets in Cornwall are managed by a different council, therefore my daughter’s disabled key didn’t work in the locks. This was an absolute nightmare and because her Stoma bag needing changing every hour a lot of our holiday was spent queuing for the toilet. The toilets are not free in Cornwall and only take 20ps so make sure to save up plenty to take away if your thinking of going. We all picked up a stomach bug and my daughter’s Stoma went crazy and kept leaking because of the amount of waste that was made from the bug. When you have a Stoma you have to be especially careful to keep hydrated and have extra salts because of the way a Stoma works. My daughter was vomiting and her Stoma was also overworked and she was at high risk of dehydration. Every time she drank it just kept coming straight through her into her Stoma bag. Her Stoma bags didn’t stay on long because of the acid from her stomach burning away at the seal, this also made the skin around her Stoma very sore. We rang our Stoma nurse and she advised giving her flat coke to drink. Apparently, coke can help settle the stomach and replenish fluids and glucose lost by vomiting and diarrhea. This worked wonderfully and after 3 cokes my daughter’s Stoma calmed down. We were grateful that we didn’t have to drive her to the hospital, we were all very ill and spent two days inside drinking plenty of coke. It was unfortunate that we were ill, I’m not surprised we became ill as the toilets in Cornwall were absolutely disgusting. We had disinfectant wipes, spray the lot with us, we were extra careful but still managed to pick something up. It was August, hot and extremely busy in Cornwall, my advice is to visit at quieter times if possible.
As the Stoma was still quite new to us we hadn’t experienced how to deal with things when they go wrong. We had taken special wipes to help with soreness around the Stoma but these were not enough for the extreme soreness and blistering the bug had caused around the Stoma. My poor daughter suffered for the rest of the week as we couldn’t get any new supplies until we were home. Every time we changed the bag she was in agony because of the blisters. When we got home we had the Stoma nurse come and we changed her methods of dealing with soreness. She now has special honey bags to wear that calms her skin when it gets really bad. The honey bags are good but are best wore at night as they come off quite easily. My daughter has aloe Vera strips to hold the honey-bags on during the night. She doesn’t like wearing these in the day if she out as they show up under her clothes. So I would advise you wait at least 4 months after a Stoma operation before you even go on holiday in this country. This gives you time to run into problems at home first and learn how to deal with them.
We are very nervous to be going so far abroad and it’s took a lot of encouragement from the doctors and nurses to convince us all to go. I know we all deserve an extra special holiday, especially when my daughter is doing so well. She’s really suffered mentally with everything she has been through and she’s always wanted to go to one of the Caribbean islands. We wanted to cheer her up and although we can’t really afford this holiday we are somehow making it possible, living life and making the most.
Here is how we have been preparing for our holiday to the Caribbean;
Make sure to check out the area you are planning to visit before you book. Look at hospital reviews, how close will you be to a good hospital, do they speak English, will they understand what you need if you need it? Does the country supply emergency Stoma supplies if you need them? We were given a little travel book from my daughter’s Stoma nurse, it translates into lots of different languages certain problems that she might encounter with her Stoma. This booklet will help explain what’s wrong with her to doctors or nurses if they don’t speak good English. It’s the perfect size for traveling and is clear and easy to read with some great tips on how to cope with emergencies.
I advise you always check with your doctors to see if it’s safe and advisable to visit. Find out what immunisation you will need and if it’s ok for you to have with your medical condition. My daughter cannot have live vaccines due to being on her Infliximab infusions. Malaria tablets may trigger off a Crohn’s flare up so we have avoided certain areas where you need to have malaria tablets before you go. We have got a special spray to keep mosquitos away and she’s having a few injections before we go. She is ok to have these as they are not live vaccines. Make sure to follow all advice given by your doctor, this will help keep you safe and will not affect your insurance. If you don’t stick to the advised precautions it could completely void your holiday insurance.
Make sure to book your holiday around your medication dates. My daughter has 6 weekly Infliximab infusions, make sure to take all this into consideration before booking. I advise having it done just before you go, this will give you time and cover you for longer. Imagine if you have to stay in the country for longer than expected, at least your medication will cover you.
Take out the correct holiday insurance, make sure to spend time searching for the best prices and one that covers you for everything that could possibly go wrong. We have saved hundreds from shopping around.
Speak to your Stoma nurse, get your doctors to write you a note giving you permission to take all your medication and supplies with you on your trip. We contacted the airline we are traveling with and asked for special welfare seats that are near a toilet that is kept free for people who need it in a hurry. The airline also told us what letters to obtain from our doctors to make this possible. Make sure to give yourself plenty of time to obtain these notes and send a copy to the airline in advance. We have also got extra copies to take with us on our journey. Apparently, we might be asked to show these when we are going through security. We also have extra baggage allowance so we can take most of our daughter’s Stoma supplies with us in hand luggage to avoid them getting lost in transit.
Make sure to order plenty of extra supplies from your Stoma supplier, changes in climate and environment may mean more pouch changes are needed. A stoma may be erratic for the first few days, following the intake of different foods, etc., but this should settle down. Some countries do supply extras in an emergency, however, we cannot get extra supplies while we are in the Dominican so we are taking lots to cover. Make a list of all the things you will need and give yourself enough time to order these before you go. Calculate how many products would be needed normally for the days of your holiday, and double the amount. Try to mix the batch numbers, just in case one batch is faulty. Don’t forget to make sure you have at least a weeks supply to come home to.
In hot weather or humid conditions, my daughter will need to increase her fluid intake. She will need to drink plenty of bottled water, and we will need to check that the seal is unbroken. Commercial isotonic sports drinks or soda which contain varying amounts of salts and sugars can help combat dehydration. Obviously, she doesn’t drink alcohol but if you do avoid excessive amounts as it can cause dehydration.
When abroad, you should be very wary of the water supply, and only use bottled or boiled water, including cleaning teeth, stoma, etc. Even in the UK, it can be better to use bottled water, since, in different areas of the country, tap water may affect because of the water difference that your body isn’t used to. Avoid ice cubes, ice cream and certain juices unless they have been made with bottled water. Salads and unpeeled fruits may also have been washed with local tap water, so it is best to avoid these foods. We are going all inclusive and are still waiting to hear back from the hotel regarding our concern with these issues. Hopefully, we will get a reply soon.
When flying, the air in the pouch may balloon a little with wind. It is not known exactly why this happens, but it could be due to altitude, not being able to exercise, change of normal eating patterns, change in cabin pressure, etc. My daughter is really worried about this, bless her. To avoid this make sure you wear bags with a charcoal filter on the pouch. To try and ease the problem, before and during the flight, try to refrain from having fizzy drinks, alcohol, and fried, fatty or spicy foods. Allowing fizzy drinks to go flat first will help reduce wind. In addition, it is better to eat sensibly and regularly for the previous 24 hours and avoid any food or drink that is known to cause wind. Do leg exercises and walk around the aircraft cabin at least once an hour, and drink plenty of water.
We have booked a hotel room with an en-suite bathroom, this will allow my daughter extra time to change her bag without being disturbed. We also have air conditioning in our rooms to keep it cool. It is advisable to store all Stoma appliances in the coolest part of the accommodation, but not the fridge. Placing the appliances in the fridge may affect the appliances so they don’t work correctly. It is acceptable to dispose of a used appliance by double bagging it, and placing it in the waste bin in the bathroom so don’t forget to take plenty of waste bags with you. When taking your supplies out with you, take them in a cooler bag (canvas types are best as they are smaller and lighter to carry)and keep them in the shade. If appliances are next to heat or left in direct sunshine, this could dry out the adhesive, so that the flange/pouch will not adhere to the skin, or it could start melting the adhesive. If the appliances are cool when you come to use them, they can be warmed slightly against the body before applying.
It is advisable to take some extra supplies of any prescribed medicines to cover for all eventualities. We will be taking plenty of medicines to cover in an emergency. Don’t forget to get a doctors note to allow taking abroad, some countries have different rules and you may get in trouble without documents and your doctor's permission.
Hopefully, everything will run smoothly and we won’t run into any complications. We are all so desperate for this holiday and although we are all very worried we are also very excited.
If anyone has anything to add or feel there is something I have missed from my list, please add in the comment bar below or email me if you prefer.