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.

india with an ostomy taj mahal in a wheelchair sam cleasby travel blog

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.

india with an ostomy taj mahal in a wheelchair sam cleasby travel blog

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.

vanilla blush ostomy swimwear

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!

india with an ostomy travel chronic illness goa

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.

aizawl football club herbert vaughan match memory Sheffield

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.

aizawl football club herbert vaughan match memory Sheffield

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.

sam cleasby ostomy travel blogger india ileostomy ibd

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!

baskets of chillies india

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.

sam cleasby mizoram aizawl

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!

mizoram aizawl india

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.

sam cleasby rovi hmar vaughan

Love Sam xx

6 replies
  1. Dev
    Dev says:

    Wow just read trip to India so soon after your op. That’s what you call badass, amazing story and will take on few tips regarding hydration and supplies. Well done your grandfather (and family) would be proud off you.

    Reply
  2. Sheelagh Matcham
    Sheelagh Matcham says:

    You are an inspiration, l had a iliostomy 3 years ago aged 66 and 3 months later l went to Australia to visit my son on my own, l was a little nervous about emptying my pouch on the tediously long flight and terrified of a leak but I coped and have done it again and been to Canada too, however I know l could not have done what you did, you are extremely brave.

    Reply

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