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Travel Insurance with IBD and an ostomy

This is surprisingly, a topic that I get a lot of messages about.  People panicking about getting travel insurance when they have a current medical condition, such as Inflammatory Bowel Disease or an ostomy.  My stoma has never stopped me travelling, and I always ensure I have good insurance, we are so lucky here in the UK to have top notch medical care for free, I can’t imagine being stuck somewhere abroad without being able to get the care I need, or to just get home and be treated here.

Panic not, it is a relatively simple job, I always use Money Supermarket, a comparison site that looks at all different insurance covers and compares them on price and policy.  They “teamed up with the top specialist travel insurance companies” and using their comparison tool you can compare travel insurance companies that cover medical conditions as part of their policies.

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People who have a greater risk of claiming are forced to pay more for their insurance premiums, so folk like us may end up paying a lot more, regardless of this, it is really important to declare all of your medical conditions when applying for your insurance.

Money Supermarket says “When searching for an insurance company that covers pre-existing medical conditions you will be often asked a number of in-depth questions and will be required to submit detailed and sometimes very personal answers. You will be asked about a range of conditions both physical and mental such as depression and anxiety.

Whilst this can be a frustrating process it is necessary so that the insurance company can tailor your policy to your specific needs and determine any risk you may impose.

Failure to declare a medical condition to an insurer could result in any claim being rejected and force you to cover any medical costs yourself. It may be tempting to withhold certain information in order to obtain a cheaper premium, but in the event of a claim the insurance company can access your medical records.

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No matter how minor a medical condition may be it is always worth declaring this to the insurer just to be sure that you are fully covered.

Once you have answered all relevant questions there are a number of potential outcomes, these are:

  • Offer a standard travel insurance policy depending on the severity or type of condition
  • Exclude medical cover for certain pre-existing conditions
  • Offer the insurance to you but at a much higher price
  • Refuse to insure you at all
  • Impose certain restrictions, exclusions, special terms or higher excess payments”

 

So head over to Money Supermarket, click to say whether it is Single Trip or Annual cover and let them know where you are going.

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Fill in all medical questions and diagnosis you have along with any treatment you’re having, had recently or on a waiting list for, view the results and choose your cover.

It does seem really unfair that disabled people face extra costs when it comes to travel insurance, it limits people’s ability to travel as anyone else. Some people face cover that is hundreds and hundreds of pounds more than if they were non-disabled.

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It’s always worth looking at the time restraints, I’ve found that insurance within 6 weeks of a surgery goes up massively, and also the country you’re visiting varies in cost a lot (America I’m looking at you!)

But whether it’s right or wrong to charge such extortionate fees for some people, travel insurance is so vital to make sure you’re going to get the proper care you need in the case of an emergency.

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My ostomy bag hasn’t stopped me travelling, if anything it brought me more freedom as I have more control than when I was in a flare up. I’ve been to Vietnam, Australia, Lanzarote, India and we are off on an American road trip this year, I’ve embraced my wanderlust. Yes I have to be a bit more prepared and plan for days when I’m struggling but I know my heart is happy when I’m visiting new places and exploring and so I’ll keep going as long as I can.

Happy travels!

 

✌🏽& ❤️

Sam x

Please offer me a seat…

Last summer I was contacted by Transport for London and a TV company about doing some secret filming and trialling their ‘Please offer me a seat’ badges. 

The ‘Please offer me a seat’ badge and card for people who find it difficult to stand when using public transport. The badge and accompanying card were created following requests from customers who struggle to get a seat, as their need is not immediately obvious. The badge and card remove the awkwardness of customers having to explain their need for a seat to others.

I wasn’t that confident that these badges would work, after all London tubes are not the friendliest places on earth and most people don’t even make eye contact let alone look to see if you are wearing a badge!

I have a chronic illness called Ulcerative Colitis, I have a permanent ostomy bag and symptoms of my impairment are extreme fatigue, joint problems as well as the odd bag leak.  From the outside, it is very difficult for anyone to see that I have an impairment yet there are times when I struggle to walk, stand and the anxiety of these things can make it really tough to even leave the house!

And so I boarded the tube with a team hiding at the other end of the carriage filming me and the people around me.  I stood on the busy carriage with my badge attached to my jacket and waited.  I didn’t have to wait long, within a minute a man waved to me and offered me his seat that I gratefully accepted, after a minute or two I spoke to him and the camera crew came in, I asked why he had offered me his seat. He said he noticed the badge and thought at first it was the pregnancy badge, then he saw it simply asked for a seat and he assumed that I must have some need to sit. We thanked him and moved on.

For the next two hours we got on tube after tube after tube and every single time, I was offered a seat almost immediately.  I was genuinely gobsmacked!

One man who was standing but saw my badge nudged a seated person and pointed at my badge and they jumped up offering me their seat apologising they hadn’t spotted the badge before.  They all said that the badge was a good thing and would make them realise that the person wearing it probably had some sort of illness or impairment and needed extra support.

There was not one journey in that time that I wasn’t offered a seat.  Men, women, children, older people, all saw the badge and offered to let me sit in their place.  I was expecting that a few people would take notice but I was amazed that it had a 100% success rate for my trial.

Last autumn, TfL held a six week trial with 1,200 people to test the new badge and card. More than 72 per cent of journeys were found to be easier as a result of the badge, and 98 per cent of people taking part said they would recommend it to somebody who needed it.

As a result, they are now introducing the ‘Please offer me a seat’ initiative permanently. The free badge and card are now available through their website or by calling them on 0343 222 1234.

There are no qualifying criteria – applicants do not need to provide a GP’s note or their medical history. The badge and card can be used across the network, on London Underground, London Overground, Buses, Docklands Light Railway, TfL Rail, Trams and River Services.

I think the badges are a marvellous idea, I would generally be too embarrassed, too uptight and well, too British to actually ask someone to give up their seat for me! I would assume they would question me and I would have to answer personal questions to a stranger if I asked and so these badges give an easy to understand request that isn’t pushy and in my opinion, help to end that awkward feeling of needing help but not wanting to ask.  The fact that I had such a positive experience really made me feel more positive about society and more confident in travelling around London on public transport.

 

India with an ostomy bag

In November last year, I did something ridiculous, like really, really stupid.  I can’t believe I actually did it! Two weeks after having a MASSIVE double hernia operation that cut me from sternum to pelvis, fixing an incisional hernia that had come out and got twisted and stuck and a parastomal hernia that involved completely resiting my stoma, I went traveling to India.

Do not try this at home! I am a big fan of travel and your illness shouldn’t stop you doing the things you want to, but two weeks after major surgery is a bit flipping moronic to be honest!!

The surgery was an emergency, I knew I had the hernias and there was an op to be planned for later in the year, but one day I sat on my bed and all of a sudden my hernia in my middle just fell forward and stuck there and was AGONY.  I could barely breathe, I called my husband and told him to get home from work, I knew something bad had happened.  I got to hospital and was sent straight for scans where they told me that I needed an emergency surgery.

It was scary as hell, but what was playing on my mind was that we had a trip to India booked for two weeks time.  My grandfather passed away last year and as a family we had planned a huge trip to scatter his ashes in my grandmother’s hometown.  He was a goalkeeper as a young man and the local football team had planned a memorial service to him with members of my family playing a game against them!! It was a three week trip that I couldn’t comprehend as I couldn’t even walk, but I knew I had to make it.

And you know what? I am so glad I did.  It was one of the most beautiful and soul warming times of my life, twenty odd family coming together and remembering, singing, laughing, crying.  Being there with my grandmother and my kids was so special, it is something I will never forget.

Was it tough? Oh, hell yes.  My surgeon allowed me to go but I had to give myself blood thinning injections every day for the whole time we were away.  I could barely stand let alone walk and so we got a wheelchair. I was on painkillers and all manner of meds and was high as a kite some of the time.  I was exhausted and there were times when I slept where I fell.  But luckily I had my awesome Timm and the kids right by me, they pushed my chair, they held my hand when I had to inject myself, they let me rest and had fun with me when I was awake, they made it possible and I am so grateful.

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So the trip itself, we flew to Delhi where we met up with a cousin who looked after us whilst we were there and took us all over this breathtaking city.  We had a day trip to the Taj Mahal (in a wheelchair!) and we explored some amazing sites.  It was hot, dusty, sometimes smelly and quite overwhelming but it was an experience.  As a bolshy feminist woman, I have to say that Delhi isn’t my favourite spot, I found most men either dismissive of me, or aggressively suggestive and I found that really difficult.  It’s the only place I have ever been where I felt that I couldn’t walk down the road on my own, there was a point where I felt so uncomfortable by a group of men surrounding me that I latched on to my cousin’s male friend as though he was my partner.  That doesn’t sit well with me and I hated that I felt so powerless and vulnerable.

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From Delhi, we flew to Goa for a week’s relaxation in the sun and it was heavenly! Goa (and India in general) is not wheelchair friendly, accessibility is not a key feature in anywhere we went and if nothing else, it made me appreciate living in a country where at least we are trying!  Goa also gave me chance to wear my awesome cat swimming costume from Vanilla Blush, who make ostomy underwear and swimwear.

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It was beautiful and I would love to go back.  In Goa I had an issue with my stoma that got a bit scary, it sank in completely and disappeared into my body meaning that every bag was leaking everywhere, that meant my skin was red raw and bleeding and I couldn’t move as bags were literally slipping straight off me.  In a 24 hour period, I used 12 ostomy bags!!!

I was in a panic, but I texted my stoma nurse who calmed my nerves a little and advised me to take lots of loperamide and ensure I wasn’t getting dehydrated by taking dialyrites.  I felt so shit, here we were in this amazing location and I couldn’t leave the bathroom!

Luckily Timm came to my rescue.  He took the mattress from a single bed and dragged it onto the balcony, he layered it up with bed mats, towels and pillows and made me a day bed where I laid looking out over the most perfect beach and sky, bag off, catching poop in a tissue and getting air to my skin.  It was a moment where I could have felt really sorry for myself, but instead I thought about how my view could have been a hospital bay and if recovery at this point meant laying in front of this vista then life couldn’t be too bad!

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From Goa we headed to our family home in Mizoram, Aizawl to a fabulous family welcome.  Family had flown in from all over to congregate in this very special place to celebrate a very special man.  From start to finish, it was almost overwhelming in it’s wonder, the football match was emotional beyond belief but watching his ashes hit the pitch where he had played 70 years earlier was astounding.

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The family parties, food, singing, laughing, crying, the sites and sounds, the connection and the wonder was all pretty much the best experience of my life.  Sitting with my cousins in a land so far from our own homes but seeing where our grandmother was born was awe inspiring.  Seeing so many family members coming together to fulfil my grandfather’s dying wish was spectacular.

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Ostomy wise, there was a rather horrific hiccup.  You know the warnings of Delhi Belly? Well, we got Aizawl Arse… I have no idea if it was the food, water, a bug or all of the above but I got the worst belly of my life.  I sat on a toilet with the bottom of my bag open into the loo and watched poo run out of it like it was coming from a tap for about 25 minutes…

It was at this point where I was glad I was a seasoned stoma owner as I think I would have panicked if not.  I knew that if this passed in 24 hours then it was travellers tummy and I would be fine, but I knew that at the rate I was losing output that it would be dehydration that would be the ruin of me, and so I made up 2 litre bottles filled with dialarytes and sipped on the constantly, I was sat on the toilet drinking them, gagging, puking and shitting but I kept going.

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Dehydration is so underrated, especially if you have a stoma, it isn’t about being a bit thirsty, it is about your body shutting down because it doesn’t have enough hydration.  Remember that water is not the best thing in these situations, a rehydration solution is needed, if all else fails, it is sugar and salt in water or even Coca Cola! Just drink, little, often, the whole way through.  It was the worst 24 hours ever, that bathroom was a hellish place but luckily it soon passed and my litres of rehydration did the trick and I was straight back up on my feet!

Timm got it the following day and he said he has never in his life been so ill, he wouldn’t listen to me about drinking and ended up being vaguely ill for weeks.  I honestly think it is because he puked and shat out ever electrolyte in his body!

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Travelling with an ostomy so soon after surgery means being hyper aware of your body and your needs.  I knew I needed to listen when I had to rest, I ate well and drank plenty, I made sure I avoided local water and ice and rinsed fruit in bottled water.  I enjoyed myself but also allowed myself time to recover.

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My other advice is to be prepared.  This. is. vital.

Ostomy bags – take at least twice as many as you think you will need.  I usually change my bag every 2 or 3 days at home, but planned for once a day for the trip and then doubled it.  If I hadn’t, then the Goa experience of 12 bags in one day would have screwed me completely!!!

Plenty of supplies – dry wipes, any creams, pastes, rings etc that you use. Pack anything you COULD need, so if you occasionally use paste but not often, definitely pack it.

Medication – All your usual medication, in it’s original packaging with either a letter from your doctor or your repeat prescription.

Ostomy Card – I got one of these travel cards from my stoma nurse, it has an explanation of your stoma in several different languages.  We realised that it was in Hindi and so used google translate to print it out in the native language of the country we were visiting.

Lots of waste bags – obviously needed for bag changes, but also good for sticking soiled clothes in till you can get them washed.

Dialaryte (or any other type of rehydration powders) – LOTS of them! They are small and easy to pack in and can be a literal life saver!!!

A readiness to listen to your body and a sense of humour!

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I look back now and I can’t believe we actually managed this, but though it was crazy, I have to say, I am so pleased we did and I am proud of myself.

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Love Sam xx

Time away in Spain

Last week I had some time away in Spain, the stress of dealing with my stoma, the hernia and the upcoming surgery was just getting too much.  I am a positive person but it was all getting me down, I was really weepy and just felt so down and sad.  After hearing that my surgery was being postponed yet again I just had a bit of a breakdown, I felt so out of control and things just seemed too hard.

So my lovely husband suggested I have some time away, I looked at flights and then spoke to my wonderful Aunty and Uncle who live in Spain who very ,very kindly said I could spend a week with them.

I put aside the guilt that all mums feel as I was leaving my kids for a week, but I knew they were home safe and happy with their dad and so I packed a bag and headed off for a week in the sun.

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My cousins were over with some of their friends visiting their mum and dad and so I had a lovely family break and really felt looked after.  It was so nice to not have to look after other people for a week and to just have time looking after myself.  I had such a fantastic, relaxing time.

I had a few times where I was really uncomfortable with my hernia but the joy of being away with no kids was that I could go and lie down and rest with no guilt at all!  I also had a few stomach pains and a little dehydration but nothing that rest, plenty of fluids, a few painkillers and diarolyte couldn’t help.

I have come home with a new sense of positivity, feeling so much better and ready to face the next few tough months.  My stress levels have dropped and I just feel stronger mentally and though Im still frightened about the surgery and recovery, a week away from real life has made everything seem a little easier.

Here are a few photos from my week away.

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So this explains my absence for the last week, thanks so much for all your kind messages and emails.

 

Love Sam xxx

 

Struggling with a swollen stoma in the heat

Sorry it’s been a couple of weeks since my last post! We’re having such an amazing time in Australia that I haven’t had the time or energy. It has been non stop in exploring, visiting family and generally just having an amazing time!

My stoma and bag have been doing ok but the last few days I have been struggling. My stoma swells in the heat and when I’m exerting myself, I don’t want to miss a thing so I’ve been snorkelling, swimming, walking and doing everything I can. The problem is that my bag has to fit snugly around my stoma and so when I cut it to fit my swollen stoma, as the swelling decreases it leaves a gap and that gets the acidic output on my skin so I’m left with a Red raw ring of skin.

If I cut my bag to fit my normal sized stoma, when it then swells, my bag cuts into the edge of my stoma. It is now ridged, bleeding and very tender.

I’m in catch 22! If anyone has any advice it would be greatly appreciated. I have texted my stoma nurse for help and I have arranged a clinic visit for when I’m back in the Uk. We fly home on Tuesday, I can’t believe it’s been almost 6 weeks!!

Apart from the issue my stoma and bag have been entire dealable. I’m really glad we came traveling and would recommend anyone with a stoma to not be put off by the idea of travel.

This trip would have been impossible during a flare up. My bag meant I have had a trip of a lifetime and been able to enjoy things I never thought I would.

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Love Sam xx

UPDATE – I spoke to my stoma nurse who suggested using a donut (a sticky , mouldable ring) around my stoma before I put my bag on. This didn’t solve all the problems, but it definitely helped!!

When in doubt call your super stoma nurse!!!! Xxx

2013 – what a year!

This year has been filled with highs and lows. I got sick, lived in an amazing house, held our Cleastonbury festival, laughed a lot, cried quite a bit, had my colon removed, got an ileostomy bag, had some big disappointments but also some fantastic highs, I have visited Vietnam and I’m ending the year in Sydney with my big sis!

I’ve faced my biggest challenges this year, two weeks in hospital, IV steroids, moon face, mood swings, pain, fear and the ‘decision’ – I had a subtotal colectomy with an end ileostomy and spent the last four months living with an ileostomy bag.

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It has been one of the hardest years of my life, there were times when I felt so low, that life was unfair and that I didnt want to have to deal with all this.  But through the support of my friends and family I got through it.  I founded this blog as a cathartic way to express my feelings while I was on this rollercoaster ride and was amazed that so many of you read it.  Over 30,000 views since I started!!!!

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As tough as this year has been, I have come through stronger and with a sense of what I want from life.  Im more adventurous and open to change, I want to make the most of every second, Im braver than I thought and stronger than I seem.

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I am covered in battle scars that remind me of what I have been through, Im not ashamed of them nor do I feel the need to hide them or cover them up.  I wear my ileostomy bag with pride as it is a symbol of wellness for me.  Before my operation my life was ruled by the toilet, my quality of life was suffering and I just couldnt see a happy future.  Now my bag lets me lead a better life.

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Im travelling at the moment, I am been to Vietnam and Im in Australia now.  This is something I couldnt dream of doing before as the fear of having a flare up would have ruined it all.  In the last 3 weeks I have been swimming, snorkelling, rode a bicycle around a Vietnamese island, travelled over 12,000 miles, hiked through Aussie bush and LIVED.

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2013 has made me realise that who you are is not what your life throws at you, but how you choose to deal with it.

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So that was 2013, lets see what 2014 brings!

Happy New Year to you all!

Love Sam xx

Sydney!!

I have been in Sydney for just over a week now and all is going well. Travelling with an ileostomy bag is a lot easier than travelling during a flare up of ulcerative colitis.

I’ve been swimming, snorkeling and dealt with 40 degree heat and my bag has been just fine! I was nervous about how sea water and high temperatures would affect the bag but there have been no problems so far.

I’m kind of feeling the pressure to be completely on top of everything as I don’t want my stoma to ruin our trip.

There are times where the heat gets to me and my skin is sore, I feel tired and dehydrated. My stomach gets quite swollen and I have had two occasions where I have felt like there was slight blockages. (For the record I no longer eat mushrooms, oranges and spring onions sliced lengthways!)

Today my daughter made me feel great. She said “I’d vote for you to be the best person ever because you only had a big operation a little while ago and you do everything with us, mum I think you’re really brave because you just do it all and you have a bag on your belly!” I gave her a massive hug and kiss, it was really lovely to hear her say something so sweet!!!

There has only been one time where it got a bit much, I had a blockage and felt quite poorly – I had to have an hour laying down till it passed. I felt bad for this but I needed a little time.

I’m determined that the kids will have an amazing time and that my stoma won’t stop us doing anything.

We are having such a great time, I can’t believe how beautiful it is here. We are loving Australia!

Clothes haven’t been too much of a worry though occasionally I’ve struggled with getting longer vests to wear with shorts. With swim wear I decided against a special ostomy swimming costume as I couldn’t find one i liked, so I wear my normal swim wear. Either costume or bikini!

Wearing the bikini means I do get the odd stare, mainly from other children which I accept with a smile. It’s normal for them to be curious and want to look and hopefully the more they see things like this the more normal or becomes for other people. I have had one man openly stare with a disgusted look on his face, I thought he was going to fall over he was so enthralled with my bag!! At first I felt embarrassed and a bit upset but that lasted only a second before I felt annoyed. Really adults should know better, but I won’t let a few nasty stares put me off wearing my bag proudly!!

Here’s a few photos of our time in Australia so far.

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Love Sam xxx

Vietnam with an ileostomy

Cin ciao from Vietnam!!! Hello!!

After my surgery in 3rd September this year to remove my colon and create an ileostomy I was nervous about our planned trip to Vietnam and Australia but here I am and all is going well!

The flight was fine, I avoided the (free) alcohol which is always a bit depressing as I knew that dehydration was a possibility that could affect me badly. I took an Imodium in the morning and took two large bottles of water onto the flight with me to make sure I had easy access to water.

It was an 11 hour flight so I had to empty my bag a few times during that time. I figured out which was the slightly larger loo and made sure I went for that toilet. I packed most of my supplies in my hand luggage but made sure I had a small bag with a set of everything I needed so I didn’t have to take my big bag.

One tip is to put loo roll down the pan before emptying your bag as otherwise the output can be difficult to flush. I also packed a mini spray of ostomy scent and some anti bacterial hand gel which made life a little easier.

Despite drinking tons I did end up feeling quite dehydrated so I drank a couple of cokes and had some salty snacks. I did have some diaralytes packed too to replace the salts and fluids lost.

All in all the flight was ok, I was worried but it all went fine. And no, my bag didn’t swell up with air when I was flying!!!

So onto Vietnam – it is an amazing place!!! I have been blogging on our family travel blog so if you want to read more on our trip take a look here

We are staying in Ho Chi Minh City and we are having a fantastic time, my bag is not stopping me doing anything though I am aware of it and conscious of looking after myself.

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I have been on boat trips, walked all over the city and even cycled around an island!

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The heat and humidity has caused my stoma to swell, which in turn has caused some soreness and bleeding of my stoma. I have increased the size of the hole in the flange to compensate for this.

I’ve also had some soreness of my skin around my stoma due to the glue on the flange and general sweating in the 32 degree plus heat!!

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Regarding clothes I found shorts that fitted comfortably under my ileostomy bag before we came and I’m wearing those with long vests or tshirts. I have occasionally felt a little self conscious about my bag. It was peeking from under my top as I got out of a boat and I saw a group of men staring but it’s been fine.

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The food in Vietnam is amazing and I have enjoyed eating everything I have wanted. I’m aware of general cleanliness and only drank bottled water, not eaten street food and used anti bac gel before eating.

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There have been a couple of times where I have been in some discomfort due to my stoma being swollen or my skin feeling sore but I was adamant that it wasn’t going to ruin our trip. It is really important to me that I live a normal life and I don’t want my bag to negatively affect my experiences.

This has been an amazing trip, I have had the time of my life and I’m glad I didn’t let the surgery put me off coming. It has meant thinking some things through and making my health a priority but it really hasn’t affected our holiday.

Vietnam is crazy but beautiful – it is one of the most fantastic places I have ever visited and I’d recommend it to anyone!

This morning I have woken with some stomach cramps and diarrhoea – something I ate yesterday hasn’t agreed with me. So I’ve taken Imodium and I’m drinking plenty. This could happen bag or no bag so I won’t let it get me down!!

I’ll keep an eye on things and make sure I stay hydrated, I’ll take some diaralyte and enjoy our last day in Vietnam!!

Tonight we fly to Australia, I’ll update next week!

Anyone with an ostomy, I really hope this inspires you to know that your stoma and bag are no reason to stop you living life to the full – your ostomy is there because it saved your life – so live it and live it well.

Gam hon!!! Thank you!

Love Sam xx

Traveling with an Ostomy

In less than two weeks I am setting off with my husband and kids on an awesome adventure.  We are going to Vietnam and Australia for six weeks and I can’t wait!!

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I had a subtotal colectomy and end ileostomy on 3rd September this year and so it was a concern of how I would deal with travelling with an ostomy but after research and getting organised I am feeling confident that everything will be fine.  I thought Id do a bit of a guide to traveling with an ileostomy to get all the advice in one place for other people.

Insurance

Our trip was already booked when I ended up having the surgery but I hadn’t yet sorted our travel insurance.  When I looked a couple of weeks after the op I had a shock to find many companies wouldn’t cover me at all and the ones that would were charging around £900-1000.  After picking my jaw off the floor I started looking into it and found that the high cost was mainly due to it being less that six weeks since my op.  I looked again 7 weeks post op and found an insurance to cover me and the family for £185.00 from Holiday Extras.

Insurance was so important to me, as much as I am feeling great at the minute, I needed to know that should anything happen with my stoma I could get medical help easily and it wouldn’t end up bankrupting me!

You an find a list of recommended travel insurers on the IA Support website.

Supplies

I spoke to my stoma nurse about what I needed to do for supplies and she let me know that I needed to take one and a half to two times as many supplies as I would usually need.  Im travelling for 6 weeks so Im taking 90 ileostomy bags plus wipes, disposal bags, barrier wipes and all the other gubbins!

My delivery company and prescription service were absolutely fine with me ordering extra supplies once I had explained my trip.  Its worth my peace of mind to take extra supplies so I know I have plenty if needed.  The majority is being packed in my hand luggage with a supply in my checked luggage so I know that should all my checked luggage get lost I still have plenty of bags with me.

Please remember that scissors and aerosol sprays are not allowed in hand luggage so pre cut your flanges so you have no issues there.  Also any liquids need to be under 100ml and stored in a clear sealed bag to go through customs.

travel with ostomy stone ileostomy

I also packed stickers to cover vents for bathing/swimming, waterproof tape for added security when swimming, a spare belt, stoma paste and stoma donuts.  A box each of Dioralyte and Immodium incase of dodgy stomach problems whilst we are away.  I packed everything into a carry bag that will fit inside my carry on luggage so if security want to look through, everything is together.

stoma travel

Im also packing my usual ‘handbag kit’ of one pouch, a few wipes and a disposal bag so I don’t have to haul the large bag to the aeroplane toilet.  Plus a spare pair of knickers and some jogging bottoms in case of all out bag leakage!

Travel Certificate

You can get a travel certificate from your stoma nurse or from the IA Support by e-mail gro.t1544531547roppu1544531547sai@o1544531547fni1544531547, or telephone IA free on 0800 0184 724.   The certificate says that the bearer has a medical condition that would require them to have a private room if searched and explaining the medical equipment being carried.  It is there to give the confidence to the holder when travelling and are able to explain their condition but still keeping it discreet.

ileostomy travel certificate

ileostomy travel certificate

Food and drink

When you have an ileostomy you are always at risk of dehydration, add in hot weather, sweating, flying and different food and drinks and it can be a real problem when travelling.

Sports drinks and rehydration solutions (available from pharmacies) will help replace salts lost through diarrhoea and sweating. The impact of tummy upsets caused by unfamiliar foods and foreign water supplies can be exaggerated for people with stomas so it is worth being extra careful with regards to food hygiene and to drink bottled water (remember that ice in drinks will be local tap water!)

As we are going long haul my plan is to have a few days before on a very light and bland diet, plenty of fluids and some Immodium before the flight.

During air travel, you may find that there is increased gas in your pouch for the duration of the flight. To prevent additional gas formation, avoid drinking fizzy drinks or beer during the flight.

Confidence

The biggest thing to take with you on your travels is confidence.  I admit to having nerves about being away from my safe home and dealing with my stoma and ileostomy bag, but then I remember that without the bag I could be in the middle of an Ulcerative Colitis flare up, I could be in pain, exhausted and going to the toilet 20 times a day.  I can’t even imagine how Id deal with four 12 hour flights with a flare up, the thought of that brings me out in a cold sweat!  So whatever nerves I have about traveling with an ostomy, it HAS to be easier that traveling with a flare up!

I am nervous about going on the beach and people reacting negatively to my bag, Im scared about leaking on the plane or during a day out.  I am worried about ruining a holiday of a lifetime because of my stoma.

But all these things are my mind working over time.  In reality if ANY of these things were to happen I will deal with it! If someone was mean about my bag Im fairly sure I could laugh it off and if not my husband would shout at them.  A lot.  If I have a leak I am now practiced in dealing with it as is Timm, Im going away with my best mate and he makes EVERYTHING easier!  So I am going to put all those worries out of my mind and enjoy the trip of a lifetime!

stoma ostomy ileostomy colostomy ibd ulcerative colitis photo shoot

I hope this has helped any ostomates who are looking to travel, just remember we have faced tougher times than this and come out of it stronger and tougher… Now is the time to enjoy some relaxation and leisure during your holiday! Good luck!

We will be updating a family travel blog whilst we are away so you can keep up with me here.
 I will try to pop the odd post on So Bad Ass and will also be on Facebook and Twitter – so keep in touch xxx