Holiday Blues

Whilst in lock down I have used some of my time productively and finished some scrapbooks! I love looking through old photos and memorabilia and hope one day I can sit down with my children and show them all our adventures. Not only does my scrapbooks show me all my adventures it also shows me how far I have come from when I was first diagnosed with Ulcerative Colitis, and some very embarrassing moments.

I LOVE travelling, exploring different cities, lying on a beach and trying different things and I have never let my Colitis ruin this for me. Though times it has been hard and interfered a lot, but I am so grateful now with my stoma I can actually enjoy going on holiday again.

Travelling with Colitis is the most stressful thing ever, from the journey to the airport with 10 toilet stops, to the flight, foreign food, excursion days, museums. I could never really relax. Sometimes trips went well and my Colitis backed off a bit luckily, but others have been a nightmare. My first holiday with Connor was to Rome, and I must admit my Colitis was on its best behavior all weekend, the only thing that bothered me was fatigue that weekend, but we pushed through and it was worth it!

The next holiday we went on was a little bit different. The day before we were due to fly out to Krakow for the Christmas markets, I had an appointment with my Gastroenterologist, who wanted to admit me, but I really wanted to go on holiday.. so off I went with my extra case full of new medication. I spent the whole weekend searching for toilets, tired, and all in all really not very well. We tried to say we wouldn’t let it spoil the weekend, so we still managed to go to explore the salt mines, and even managed to make it to Auschwitz, after a very rough bus journey. We were the first people on the bus, and we had a couple more pick-ups along the way. Our driver wasn’t the most accommodating and wouldn’t let me get off to use the toilet, but after some sort of miracle I actually held it in till we got there. We enjoyed some excellent food, but often headed right back to the hotel after so didn’t explore the nightlife. Krakow, was then on our list to head back to when I was feeling well.

Early on in my Colitis life my family and I spent Christmas in New York, followed by a weeks cruise around the Bahamas. Paradise. I can remember New York being absolutely amazing, especially through Christmas as it was so magical, but it was a nightmare for public toilets! I spent the majority of the holiday running in to restaurants and hotels and half of the Christmas Rockette show in the toilet. One of the most frustrating things I can remember was breakfast time, I never ate breakfast in hope that I wouldn’t need the toilet through the day, so my family always used to have some amazing looking bagels from a little cafe by our hotel and I never got to experience one. I promised myself I would go back one day to experience the whole city again, and try to find that bagel shop.

So, in 2019 I took Connor as a surprise Christmas present (spoiler: I never found the bagel shop).

When Connor and I went to New York, we didn’t know it at the time but when we got home it was only two weeks before I had to be admitted for my ileostomy surgery. This highlights the fact I was in a massive flare up. So my second time in the city that never sleeps and I was suffering with massive fatigue, going to the toilet around 15 times a day, blood loss and just generally unwell. Great.

New York with a major Colitis flare up was an experience. I am a massive foodie, and New York has so much to offer, I knew once I ate I would need the toilet, so this made it hard and I did miss out. For breakfasts (just like the first trip) I wouldn’t eat that much so it didn’t ruin the day, I hardly ate at dinner whilst we were out and about, and after tea we would have to sit and wait until the initial ‘rush’ passed. By initial rush I actually mean about 5 shits. I had to sit out of half the Broadway show, whilst Connor sat and watched Pretty Woman on his own, and there was definitely one point where I wasn’t sure if I would make it across Brooklyn Bridge without having to squat and probably get arrested by one of the little bridge police cars. (If you’ve been you will know what i’m going on about, if not, google it).

Night after watching Pretty Woman on Broadway, after Con found me at the end hid in the toilets we went back to the room and relaxed with donuts, chips and candy!

The worst thing about travelling with Colitis is airports and flights. After being to some absolutely awful airport toilets (Egypt), to long airport security lines its then time for the hour (at least) long boarding and taxiing which without fail every time had me in a lather of sweat crying to Connor telling him I can’t hold it in any longer and i’m going to shit myself just before take-off. Just to clarify, I never actually did, but it is the worst feeling in the world. Thankfully now i’m just crying and sweating because I hate flying and it’s got nothing to do with me needing the toilet. I thankfully never had an accident whilst on a plane, only came close.

Handy tip for anyone travelling with an invisible illness is to go to the information desk and ask for an invisible illness lanyard! They are brilliant, a simple lanyard you wear round your neck (it’s got sunflowers on it too so it doesn’t look hideous) which highlights to airport staff you may need to go through the priority security or have a bit of extra help. I found out about this lanyard after once getting to the front of the security queue, about to get searched and the sudden urgency hit me like a brick. I had to run to a member of staff and explain quickly, I needed the toilet urgently, and I mean urgently or else.. and he kindly escorted me to a quick access toilet. After this debacle I never travel without my lanyard, it even helped us get through a three hour immigration queue at JFK airport and is really handy now with my stoma as it highlights I will be carrying medication and medical supplies.

New York was my last holiday with active colitis and no ileostomy, and looking back I honestly don’t know how I dealt with it and how I did everything I did. People always say to me how much of a fighter I am and can’t believe how much I have had to deal with, I never actually realise how much I went through and how much it affected my life until I look back on everything. I just look forward to my future plans, and i’m extremely grateful that our next trip, which is travelling India, is occurring now I have a stoma and not active Colitis. I couldn’t even bear to imagine Delhi Belly mixed with Colitis, at least now I won’t have to worry about what hand I’m eating with and using some dodgy toilets, or should I just say a hole in the ground, and with that image i’ll leave you.

Travels with a stoma

Having only had my stoma for just over a year travelling with it is still a new experience so I am still learning. So if anyone has any other useful tips please let me know!

I LOVE travelling, seeing the world, relaxing next to a pool enjoying the sun, exploring new cities and eating new food. All of this was difficult when I had my active Ulcerative Colitis. I knew that once I had the operation this would all change and go back to enjoying my life, and it has!

My first holiday abroad with a stoma was a big one, September 2019. Two of our friends were getting married a week apart across the other side of the world, and we just could not say no. We arranged to go to Cancun, Mexico for 10 nights for wedding number one, then fly to Paphos, Cyprus for 7 nights for wedding number two. It worked brilliant and we had an amazing time. I knew I had to prepare myself for nearly 3 weeks away, long flights and different climate with my stoma!

leading up to the holiday and flight I was getting worried about being prepared with bags and equipment, we were away 17 nights in total so I knew I needed a lot of supplies. I accounted for 3 bag changes a day (just in case to be on the safe side!) – My handy stoma travel list:

1) Enough supplies for 3 changes a day – you don’t want to get caught out with no spare! If a flight get cancelled or delayed and stuck somewhere for an extra few nights with out bags? Not even worth thinking about!

2) A stash full of dioralyte! Absolute god send after a day in the sun or a night out on the drink! Even if you think you are drinking plenty it is so easy to get dehydrated with an ileostomy!

3) A little beach bag which is comfortable to carry around! A little beach bag that can go to the pool/ beach with you or when you’re out exploring with an emergency supply kit! You don’t want to be getting caught with a leak or anything away from the room! I had never had a leak at all until I went abroad, right in the middle of the sea on a boat trip, lovely.

4) Cute swimwear, show that bag off! I am proud of my bag and it did not stop me wearing bikinis or anything, wear what you want and feel comfortable in, but don’t hide your bag. Your bag is part of you and what you’ve been through, show it off!

One of my main worries was the whole airport experience! It’s bad enough on its own with stressing about being late, getting through the security queue then realising you’ve got three hours spare so have to spend a fortune on drinks whilst waiting!

Then it’s even worse with active colitis.. but that’s stories for a different time. I was worried about the whole airport security, irrational thoughts that they wouldn’t believe I had a stoma and was trying to smuggle drugs and they would take all my supplies and I would be left with only the one I was wearing for the next 17 days, but thankfully it was fine!

The airport staff were amazing, a few weeks before I flew I contacted the airlines and they each gave me an extra hand luggage to carry medical supplies (Which meant Connor now had four cases of mine to carry for me). I just added a letter from the hospital to put in the case just in case there was any questions but it all went perfect! I explained at security I had a stoma so they took me to a little side room and asked if they could check my bag with the swab, sorted. The worrying was all for nothing. I could go enjoy the lounge now and get drunk before the flight!

A whole lot of luggage (including Connors one case)

Flying with a stoma was 1000% better than travelling with active colitis, even on my long flight I think I emptied my bag once but I didn’t mind at all. So much better than having to go on the plane toilet 20+ times throughout the flight, having to get special permission to go when the seat belt signs were on because I couldn’t hold it or standing in the long queue down the aisle thinking I wasn’t going to make it. I could even have a drink or two.. or quite a few actually without worrying, this was going to be the best holiday ever.

Once we were in Mexico my stoma and bag really showed me how much I had been missing with my Colitis. I enjoyed some amazing food, drinks and could go in the pool all day and join in the pool party without having to get out for the toilet or worrying. I rarely had problems (apart from a big leakage in the middle of the sea on a boat trip, but even that was fine. I had a bag with spares packed and just went to the toilet, cleaned up, changed and back out to enjoy myself!) The only problems was I forgot to pack a spare bikini so the remainder of the boat trip had me wearing only my denim shorts, luckily it was on the way home anyways.

Always pack an extra swimwear in emergency bag!

Luckily for me having a bag really doesn’t bother me, I don’t mind how it looks and if people look at me or not, I have it for a reason and it makes my life 100X better. I didn’t care about having it out around the pool or on the beach, and throughout the whole holiday I actually forgot I had a bag half the time. I think it actually made me more confident in a way, shows what I had been through and I was proud of it. Going on holiday and wearing a bikini and having it out on show made me realise how grateful of it I am, and how much I love it.

Since then I have also been abroad for a city break, celebrating bringing in 2020 in Krakow. Having been to Krakow before in one of my worst times, where I couldn’t eat hardly anything, drink or be able to properly enjoy myself (Although I did manage to the bus journey to Auschwitz without shitting myself which was a huge acheivement) I really wanted to visit again to enjoy everything I had missed, and it did not dissapoint. My bag really has changed my life.

I cannot wait to carry on exploring the world again with my stoma. I would like to revisit some of the places I couldn’t enjoy properly with my Colitis (New York definitely being one as I could hardly eat ANYTHING and missed half of the broadway show due to being stuck on the toilet so I need to experience that again) but I also want to travel so many more new places. November 2020 we were supposed to be travelling India, hopefully we will get there next year! Looking forward to experiencing Delhi Belly with a stoma! (If anyone’s got any tips with that please share, I would be very grateful!)

The In’s and Out’s of my Stoma

Firstly, a bit of clarity, I have an ileostomy which is where my small bowel has been brought through my abdomen and the waste which come out of this gets collected by a bag.

http://www.blakebeckford.co.uk/what-is-an-ostomy-stoma-ileostomy/

Ileo – comes from the word ileum, which is the end of the small intestine which has been brought out.

Ostomy – is the posh word for the opening, my stoma.

Because i’ve had my large bowel removed, and the purpose of the large bowel is to absorb water into the body, I have to be really careful with my fluid intake as I can dehydrate really easy. With my body not taking in fluids like the normal persons body, my output from my stoma into my bag is very loose, this means I can have a drainable bag… so when the bag gets full and I need to empty I can just drain it.. easy as!

I had done so much research about everything before my operation (even got sent a fake stick on stoma to practice putting a bag on) but nothing could actually really prepare me for the fact I was going to shit from my stomach and have to wear a bag attached to me for the rest of my life!

The day before my surgery the lovely stoma nurses at the RVI came to mark me up – they put two big marker pen dots on my abdomen to make sure the surgeons knew where to go, reassuring. But the real fact is that everyones body is different, some stomas sit high, some sit low so we experimented with different clothing/underwear/how I sat to make sure the end position of my stoma was going to be in the right place and comfortable for me. This photo below is the last photo I have of my body with no stoma, it’s so weird to see now! The photo was also our whatsapps group icon for about 6 months after.. not sure why!

The nurses stated that even though I was marked up, during surgery if there were complications or when they got in there, those positions weren’t possible my stoma might not be exactly in the planned position, so this worried me a little bit for when I woke up what if it had gone wrong and it wasn’t going to be comfortable and I would never be able to wear jeans again, but when I woke up from surgery I honestly couldn’t have bothered any less. Drugged right up and didn’t even realise I had a stoma till the doctor came round to check.

Before I go off topic I also wanted to show you how a stoma is actually formed in surgery, I find it so interesting! The photo below shows it alot better than any description I could do, so I’ll let that do the talking, but I can’t believe that’s how my little stoma was formed! Im proud! Right after surgery it was so bruised and swollen but you’re reassured that honestly it will get better, the stoma will retract and hopefully if you’re lucky go in a nice circular shape so its 100% easier to cut bags.. and mine did just that, im so happy with it, it’s just cute and little! Photos are below.. so if you don’t want to see a real life stoma do not scroll down!!

https://www.coloplast.us/Global/US/Ostomy/Professional/
CPOC_DialogueEducation_SurgicalPads.pdf
My stoma the day after surgery (its just blood don’t worry)
Latest photo of my stoma – about October time! I don’t tend to take regular pictures of it

And there we have it, how my stoma was formed, what my stoma actually is and a lovely photo of it! I hope if you didn’t know about stomas you have learned a little bit, and if you did already know about them.. I hope I got my facts right!

“You call that normal?”

The amount of times i’ve spent in hospitals and being admitted is ridiculous. i used to brag a few years ago that I had never been in hospital; never broke a bone, never been poorly, well guess who’s not laughing now.

The first time I was admitted in hospital was an eye opener. Sunday 19th March 2017, I had been diagnosed around 5 months and never really had a good day, but for me I just got on with it, thought it was something that I just had to deal with now!

I went into A&E through night with the worst pain i’ve ever been in, Dr Valentine (honestly) assessed me with the usual questions “how many bowel movements a day?” “what are your bowel movements like?” “Have you noticed any blood in the stools?” To which I replied, of course, I go around 10 times on a good day and there is always blood… but thats just normal for me.

“You call that normal?”

Trust me, now I know, that’s not just normal and it was always etched into me. It is not normal.

I spent my first week in on a max dose of the usual prednisolne and because I’d been losing that much blood a good old iron and potassium infusion! Luckily I was in my own little room with my own toilet, where my Mam could visit whenever she wanted and bring me nice snacks and company! Sounds like a holiday camp, I knew I was going to have to get used to this, it certainly wasn’t going to be my last time.

I’ve since been in multiple times, to different hospitals. Whitehaven, Carlisle and Newcastle RVI, it’s nice to try different hospitals, different scenery but each time a new set of friends made.

I could go on all day about the people I’ve met whilst being on different wards. I liked being in my own room, and sometimes that was essential (like when I had to have a commode as I was going on toilet about 30 times a day, and I was not comfortable with 5 others watching me do that) but I like being on a ward for the conversations and it stops it being so lonely.

It goes from the lovely Lillian who kept waking me up through night as she believed there was a dog licking her hand (definitely dreaming), to the wails of Frank who managed to wake up at 8pm every night and then fall asleep at 7am the next morning, Bernadette and her carers who put me and Connor on to our favourite Thai Van in Carlisle Viaduct carpark (Shoutout to the Pad Thai strEAT food).

In my last visit to the RVI for my sub-total colectomy, I was in for 15 nights, made bearable by every single person on the ward, I will never forget any of you! (Apart from the woman opposite who complained she couldn’t get any sleep when they discovered through night I fell ill with an infection and had to keep coming in to monitor me and whizz me off for emergency CT scans, honestly I would much rather have been getting some sleep too.)

And the story begins..

Hi All,

This is me, Kirby Johnston, 23 from Whitehaven, Cumbria.

Jesus it’s like a CV isn’t it, honestly it’s not all going to be as boring as that, but formalities first!

Not really sure about this, but here goes! I will (hopefully) be bringing you an insight and some stories about living life with Ulcerative Colitis and and ileostomy!

My goal is to spread awareness of the disease and break the taboo. We all use the toilet, some more than others, but nobody seems to want to talk about it! It’s embarassing to talk about, but it really shouldn’t be. I remember the first time I really noticed something was wrong, it was just after I came home from a family meal, May 2016. My Dad actually suffers with bowel problems, Crohns, and when I was 16 he suffered a perforated bowel leaving him with a colostomy. Since then he has had it reversed but as a family we were all aware of the disease. Therefore, when I went on toilet that night after the meal and noticed some blood in the toilet, I knew right away something was wrong and after telling my parents a doctors appointment was booked for the next day.

Alot of people have problems getting the doctor to take them seriously and it’s awful to say it but believing just how bad it is. When I went to the doctors that next day I went through my symptoms, told them about the blood and it just felt like they were going to chase me off, but as soon as my Mam mentioned my Dads history, something just switched on. I had to take bloods and stool tests and then I am pretty sure when they came back I was referred to a gastroenterologist for more tests (the dreaded camera). I had my official diagnosis of Ulcerative Colitis in October 2016, when I was 20 years old.

So there we have it, thats my story… ha, I wish, thats just the very start of my story and let me tell you there is so much more to go!

It’s hard to explain Inflammatory Bowel Disease (IBD) unless you actually live with it 24/7, actually I would say it is unexplainable. Unpreparable too, nothing could ever prepare you for living the rest of your life with an incurable disease, but everyones cards get dealt and sometimes you don’t get the hand you want.

I have got so many ideas I want to write about in this blog, I want to tell my story, every single detail. But, there is so much to go through so i’m going to need some help.. I need to know what people are interested in, what people want to actually know, there is so much to tell… well 4.5 years worth of living with a chronic illness to be exact!

  • Surgeries
  • Medication
  • Symptoms
  • The dreaded steroids
  • Hospital stays
  • Colonoscopys
  • Working with IBD
  • Relationships with IBD
  • Travelling

So please tell me if you like what i’m talking about, share it around, get my story out there! I just want to help, even just one person feel like they aren’t alone in what the are going through 💕

See you all on the next post..