Travelling with Humira

Departing Heathrow!

Hi guys, sorry, I’ve been meaning to post this for a while now… I’ve just completed a month long yoga teacher training course in Rishikesh, India, (now a qualified yoga teacher!) and finding the time to write has been a struggle! I finished my yoga teacher training on the 29th August, since then I have stayed in 4 hostels and travelled on 3 trains around India.

Always a toilet in sight 😉

I want to share my experience so far about backpacking with Humira.

In the run up to my trip this was one of the biggest things I stressed about. I had many meltdowns worrying about how I would keep my Humira cold, what if I couldn’t and ended up getting really sick, having to cut my trip short and come home early. This went round and round in my head, many sleepless nights were had and anxious tears were shed.

Firstly, the NHS were only able to provide me with a 4 months supply of Humira pens due to some legislation – patients leaving the UK for more than three months are no longer under their duty of care… (my trip may be a year or more – I’ll cross that bridge when I come to it!) That amounted to 8 pens in total. As you may or may not know, Humira must be kept chilled between 2C – 8C. Bit tricky in temperatures up to 40C and travelling every few days!

The first hurdle would be keeping it cool during the 25 hour door to door journey from home to my yoga school in Rishikesh.

After lots of research online, I decided to purchase an iCool Medicube to transport my medication around in. It keeps your medication cool for up to 36 hours (this was the longest time I could find when looking at the various options of chilled medication storage). I purchased from MollyMojo.co.uk as it was the cheapest option in the UK but a quick google and you can find other online sellers of the iCool in the UK and US.

So far I cannot fault it, it keeps the Humira perfectly chilled. Before I left the UK I also took the ice packs on a camping trip and they kept the food and beers nicely chilled for two days as well 😏

iCool medicube

NOTE: if you’re looking at cool bag options for yourself you might come across the FRIO, beware, this is not suitable for Humira as it only keeps chilled between 18-24C, it’s confusing because they market their products for use with Humira on their website!

Anyway, going back to the journey – you will need to take some documentation with you in case you get queried at airport security. Your IBD team should be able to provide you with this, also your Humira supplier (mine is a company called Health Care at Home). I also got a print out of all my prescriptions from my doctor.

Letter from my Humira supplier

I was stopped by airport security at Heathrow Airport, I showed my paperwork and explained I was travelling with medication, the security guy had no issues, he just had to perform a quick search and swabbed the bag then I was good to go. Delhi airport security didn’t even query my med bag.

I notified the airlines in advance – Alitalia and JetAirways. This was relatively straight forward, I contacted the airlines using a number found on each of their websites, I was asked for a few details about the medication – drug name / volume of liquid / quantity etc. Write all of this information down before calling the airline and keep a pen and pad handy. I took the iCool on as hand luggage along with my usual hand luggage and experienced no issues there either. It all went so much smoother than I had pictured it in my head. The airlines must experience this frequently with diabetic passengers etc so it’s no biggie.

As soon as I arrived at my yoga school in Rishikesh, I asked if they had a fridge and freezer to put my Humira and ice packs in. It was no problem. If you’re going somewhere like India or Nepal, it’s worth noting they may have frequent power cuts. However, I found none of them lasted long enough for me to worry about my meds getting warm. FYI: In India they call a freezer a ‘deep freeze’.

My school in Rishikesh

I graduated from yoga school and had to leave the building on the 29th August. My boyfriend would be meeting me in Rishikesh on the 1st Sept – we planned to stay in Rishikesh for a few more days as he wanted to explore the town I’d been living in for a month before we began our travelling adventure.

I moved to a hostel down the road from the school, it wasn’t far to walk and when I arrived I asked the receptionist about chilling my meds and he directed me up to their cafe upstairs. A guy up there stored my medication in the fridge and took my ice blocks to a freezer out the back. No problems at all. I stayed here three nights coz it was dirt cheap (£3 per night!) then moved to a nicer hostel down the road for my boyfriends arrival. Same there, no issues with storing my medication and freezing my ice packs.

The next destination was Amritsar, a 10 hour sleeper train from Rishikesh. This was fine, we arrived a little too early to check in at our hostel (8am) but our new host was amazing and so helpful. I put my Humira in the communal hostel fridge, no issues here (generally people aren’t interested in stealing Humira pens). He didn’t have a freezer at the hostel but informed me that he did have one at his home so he took them home and froze them for me! We stayed here for 2 nights. The host then retrieved my ice packs for me at about 10pm the night before we departed Amritsar as we had a 4:10am train to catch to Delhi. I didn’t stress though as I knew the cool bag would stay cool for long enough.

The Golden Temple, Amritsar

Everything went so smoothly, too smoothly almost… until Delhi.

Arriving at our hostel in Delhi the staff couldn’t really understand my request to store my medication at first. There were three staff members discussing in Hindi for several minutes before one of them led me up to the 4th floor where there was a communal area with a dirty old fridge. The fridge was empty and wasn’t plugged in, great start… so the staff member switched it on. I placed my Humira in the fridge surrounded by my ice packs to keep it chilled until the fridge cooled down. There was no freezer at the hostel, the fridge looked like it had freezer section at the top so we went out for brekkie and returned later to put the ice blocks in the top section.

I checked on the fridge later on and everything was fine, we stayed here two nights so I checked on it again the next day too, all good. On the 3rd day we had to check out at 5:30am to catch a train from Delhi to Agra, when I went to collect my medication before we left I found that the fridge had been switched off throughout the night and was completely warm. Absolutely fuming. So this is where I’m at today, I’m not really sure what to do or if my medication is still okay to use… upon arriving at the next hostel I put it straight in to their fridge. My advice to you if you’re planning a similar trip would be to write a note to leave on the fridge if it’s in a communal area to ensure no one unplugs or turns off the fridge.

Happy to get the hell outta the shit hole hostel

The hostel in Delhi was exceptionally bad in comparison to the others I have stayed at in terms of cleanliness, staff, service etc – so I think the majority of places you will not have this issue, as most people I have encountered on my trip will go above and beyond to help me. It’s just unfortunate on this occasion! I honestly was ready to scream at the guy but he wasn’t there this morning when we checked out. Only this random dude sleeping in reception… I was nearly in tears by the time we got to Delhi station this morning panicking about what to do but I managed to hold it together.

5* Service

I guess from here I will email my IBD team for some advice and hope that I can still use my medicine. Fingers crossed…

Please comment or email me if you are planning a trip and have any questions about travelling with Humira or other medication or travelling with IBD in general. (I’ve also already experienced the dreaded Delhi belly – post to follow!). Thank you for reading 💜

Steph xxx

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Festivals with IBD

I bloody love a festival, it’s definitely my favourite thing about the summer, my bank balance and my guts disagree, but whatever, you only live once right…

It’s definitely not easy going to a festival when you have IBD. The morning queues for the portaloos suck (and the disgusting state of them when you finally get in there), lack of toilet paper and all of the food/alcohol *and maybe other things* that you wouldn’t normally consume messing with your bowels. Not to mention the hygiene issues. But if you go prepared you can get around most of these issues and will have THE best time!

I’m not going to bore you by listing all the festivals I’ve been to over the years, (I’ve been to a fair few FYI 😉) and have picked up some tips along the way that I want to share with you about how I coped with my dodgy guts…

What to pack

This isn’t my full packing list but defo things I find essential.

  • Wet wipes
  • Bum bag or back pack (or both)
  • Antibacterial wipes – I like to get a little pack of these to carry in my backpack/bum bag so that you can clean the toilet seats with them.
  • Toilet Roll! – Do not expect there to be any in the portaloos!
  • Hand sanitiser
  • “Can’t wait card” – get this free from bladder and bowel  or crohns & colitis
  • Your steroid card if you are currently taking prednisolone
  • Enough medication for the duration (you may want to bring a copy of your prescription in case you get queried by security – saying that, I never have been)
  • Pain killers, antihistamines, vitamins, rehydration sachets, creams, stoma supplies etc
  • Plenty of clean undies / trousers
  • Shower gel & flannel
  • Bar of soap
  • A little wash bowl
  • Towel
  • Bog-in-a-bag (seriously this is a major life saver when you can’t wait in the long toilet queues, just put this up in your tent!)
  • Biodegradable sanitary bags – to dispose of the above
  • Deodorant / body spray
  • Some comfy or stretchy trousers – oh hey ‘8-months-preggers’ bloating
  • PJs
  • Biodegradable glitter – everyone needs glitter
  • Snacks / Food / Drink
  • Reusable cups
  • Phone
  • Battery pack & charger cables
  • Torch / Head Torch
  • Portable speaker
  • Sliders / Flip flops – for walking around your camp
  • Wellies
  • Rubbish bags
  • Reusable water bottle
  • Sun cream – especially as some medications can make your skin more sensitive
  • A hat
  • Sunglasses
  • Warm clothes
  • An airbed & pump – (it’s SO worth carrying this in)
  • Waterproof Jacket
  • Ear plugs / Eye mask
  • Trolley / Cart

When I’m staggering around at a festival I like to keep a backpack on me to carry around the essentials like my phone, purse, toilet roll, hand-sani, wipes, suncream, waterproof jacket… and my wine of course.

Sequins = essential

Choosing your campsite

If you can afford it you might want to opt for the VIP or posh camping option (if there is one). The campsite toilets here will be less crowded and a lot cleaner, depending on the festival, you are likely to get showers too. (FYI I’ve never actually done this coz I’m usually too skint, but it sounds like THE dream).

I always like to check out the festival site map online before, this gives me an idea of where the toilets, medical facilities and water points are and how far I will need to walk to reach the main areas each day. My friends and I will usually pre plan which campsite we’re going to aim for and will always try to grab a camping spot near to the toilets – but not too close as it can get swampy & stinky. If you are meeting friends who will be arriving before you, make sure to ask them to grab a spot near the loos.

It’s worth checking if the festival has a downloadable app which includes a map showing all of the toilets. Glastonbury and Bestival both have apps. Whether you’ll be too drunk to operate this at 5am is a different matter.

You might want to check out if when nature calls are at the festival you are attending. You can pay to access to their posh loos which are kept immaculately clean. There is also the added bonus of hair washing and styling facilities. (Again – I’ve never actually done this and I have survived, but it might be nice if you have the funds/option).

Toilets

The campsite toilets and water points are at their busiest in the morning when everyone starts waking up, from about 9-10 ish up until 12-1pm. This is where the bog-in-a-bag is an absolute fucking life saver.

My tent has 3 compartments – a main room and two separate bedrooms at the back. At the last festival I set up the bog-in-a-bag in one of the bedrooms (the room was also big enough to store my trolley, alcohol, backpacks etc). It was so handy because if the camp toilets had a ridic queue I could zip-up the door for privacy and just go there. It’s way more hygienic than using the campsite loos anyway and you just dispose of the bag after each use. If you have a speaker you can play some music in your camp and no one will know 😉 my mates all loved my private loo though and wanted a go. (My sister actually bought it for me for my birthday one year, BEST.PRESENT.EVER.)

The later on in the day it gets the less busy the camp toilets become, people start to head out for the day to see music. But then the toilets in the arenas start to get super busy! If there is a headliner or popular act, the toilets closest to that stage are going to be a nightmare. It’s worth noting where the next closest toilets are as the queues will be shorter and it will be worth the longer walk to get there.

Disabled Loos

Okay so I don’t want you guys to end up in the same situation as me…

Sunday at Glastonbury last year – I’d had an unreal weekend, but I was frail from the previous four days of debauchery. My guts were having none of it. We were at the main stage watching Chic & Nile Rodgers when all of a sudden, I HAD to go. The queues for the nearest toilets were about 20 people deep, absolutely not an option. At Glasto they have a disabled portaloo area at the main stage which is fenced off and guarded by security (guessing so people cannot abuse them) – I showed the guard there my ‘can’t wait card’ and pleaded with her to use the disabled toilet, she was so rude, didn’t even look at my card and told me I needed a disabled wristband and was point blank refused entry. I walked away in tears, in pain and trying not to shit myself. I then had to walk what felt like eternity to find a toilet without a four mile-long queue. Fortunately, I did make it.

So, to avoid this happening to you I would suggest getting in touch with the festival beforehand to make them aware of your medical condition and that you will need access to the toilets. You can often find this information on the festival website. With Glastonbury you can register to use the accessible facilities online before hand.

If you have a radar key it might be worth bringing that too.

Nile Rodgers Glastonbury 2017 – when I nearly shat myself

Food

Festivals nowadays have the most amazing selections of food. From your bog-standard burgers and chips to pizza, pasta, Greek, Indian, Caribbean, Mexican, vegan, veggie, the list goes on and on… there is no doubt that you will be able to find something delicious to eat.

If you’re like me and have a huge list of foods that aggravate your gut then it is probably best to avoid some of the more high risk foods when at a festival – you want to minimise symptoms as much as poss when you’re away from your home luxuries of a proper toilet.

It’s also good to bring along some snacks and food that you know you tolerate well.

Alcohol

Again, just go with what you know. What is fine for me may not be okay for you and vice versa.

For me personally, I know I can tolerate spirits (hey G&T 👋🏻) and wine a lot better than the more gassy drinks like beer or cider. I mean, I LOVE BEER, but it will leave me bloated and crampy. Saying that, I definitely do not take my own advise and will usually end up drinking ALL the beer and just facing the consequences afterwards. Sometimes you just want a nice cold beer instead of the piss warm stuff in your tent.

Drugs

The non medical kind.

**DISCLAIMER** Ok, so I am not in anyway condoning, or encouraging the use of illegal substances. But. If you’re going to partake in a little recreational use whilst at a festival you might as well do it as safely as possible…

When taking illegal drugs there is always a risk, whether you have IBD or not, however as an IBD suffer there are the added risks. If you take medication and are planning on taking other things it’s wise to check online that it does not have any dangerous drug interactions. Make sure you drink plenty of water so you don’t dehydrate and listen to your body. If you don’t feel right then don’t hesitate to seek medical assistance, they are there to help you, not tell you off.

**Again not condoning it** but I find that if I’m struggling with cramps and bloating at a festival then weed helps. But hey, that’s just me.

What if you flare?

Again I’m a bad example… I’ve been to festivals and gigs in the middle of flare (and drank alcohol) when I should definitely have stayed in. But, I was fine in the long run. It definitely takes me longer to recover from nights out than someone without a chronic illness, but I am prepared for that. I am not saying that you should go to a festival when you are flaring, but you know your own body and if you don’t want to suffer the fomo then still go! Just be prepared to listen to your body and don’t hesitate to go back to the tent to rest, or go home if you need to. Obviously if you are in so much pain that you are struggling to do normal everyday things then definitely do not go to a festival.

In 2016 I went to Glastonbury a week after starting Humira, whilst also taking 6-mp which both supress your immune system. My IBD nurse gave me the okay to go to the festival, but she was really concerned I would get ill due to my low immune system and all of the germs. She advised me to go home if I began to show any signs of infection. Turned out I was absolutely fine and I had the best time. Again, I’m not a doctor and can’t advise you what to do – so don’t sue me haha.

The aftermath

What goes up, must come down.

If you haven’t experienced a festival comedown before then be prepared to feel like a sack of shit, for a couple of days at least.

Having a chronic illness heightens this as you have your usual symptoms and medication side effects to deal with on top of the normal post festival blues. I always book an extra day or two off work for recovery time. Get home, scrub off all of that festival dutt and catch up on some much needed sleep. My comedown cure is bed + feel good TV + vitamins + all the beige food. I usually make some kind of super green juice in my blender, cramming in all sorts of veggies and fruit in attempt to replenish any of the good stuff I’ve lost over the previous days.

5-HTP is pretty good for post festival blues. As with all vitamins & supplements just make sure it doesn’t interfere with any of your medication. Be careful if you take Prozac or other antidepressants as I know it can mess with these.

My tum is usually a bit out of whack for a few days afterwards, but normally sorts itself out when I get back to my normal routine. If there is anything you are concerned about then pick up the phone to your GP or IBD team.

Unfortunately I haven’t made it to any festivals this year, coz, saving. I hope that at least one thing here could come in useful to someone! I’m interested to hear about your festival experiences, how do you guys with an ostomy get on?

Lastly – HAVE AN AMAZING TIME!!

My journey until now

Hello everyone!

For my first blog post I thought I’d just explain a little bit more about my background with IBD and where I’m at today. This is a pretty long-ass post (soz) so if you’re just interested about the meds I’m on then skip to the bottom 😉

I was diagnosed in 2003 when I was just 14. It was in year 9 at school when I started getting symptoms. It started out with the usual – cramps, rushing to the loo, weight loss, fatigue which I’m sure you’re all familiar with. But then I started seeing blood in the toilet, and lots of it. Initially I was too embarrassed to tell anyone, not even my parents. I felt completely isolated. The symptoms got worse and worse, to the point where I couldn’t keep it a secret any longer, so after about 3 months of suffering in silence I finally plucked up the courage to tell my mum. We went straight down to the doctors where I was told I would be referred to a specialist at the hospital.

My mum took me to my first gastro appointment at the Aldershot hospital, it was a run down, old army hospital. We checked in at reception and waited for what felt like forever before being greeted by a senior consultant, Colonel Fabricius, alongside a junior army doctor, we followed them into a consultation room and I took a seat next to my mum. We listened whilst they explained that I may have something called Crohn’s Disease or Ulcerative Colitis. I was so confused, I hadn’t heard of these before and slightly weirded out at the prospect of having a disease.

Following on from the appointment I was referred for a colonoscopy and some blood tests. The first colonoscopy was an absolute fail. I didn’t drink enough of the bowel prep liquid (it tastes fucking rank, as you probably know) so when it came to the actual camera they could only make it so far before they came in to contact with some poop and had to abort the mission. A week or so later I was back for my second attempt at the colonoscopy, this time I managed to drink all of the bowel prep as I didn’t want to go through a third probing attempt if this one failed. The nurse decided to give me a cheeky enema as well to make sure I was fully empty before going in…

The results came back and I was diagnosed with severe Ulcerative Colitis, the consultant recommended undergoing surgery to remove my colon and have a have a bag, at the time I really wasn’t okay with this, I was worried would be bullied at school for being different. My parents really tried to encourage me to go for the surgery, but I refused, instead opting to go down the route of medication and was prescribed Prednisolone and Sulfasalazine. After reading about the undesirable (to put it lightly) side effects of Pred, I was too scared to take them – in hindsight really stupid I know, the symptoms of uncontrolled Colitis far outweigh some acne and moon face!

I pretended to take the steroids (please don’t judge me, again, silly teen!), whenever I went to a my hospital appointments I would lie and say everything was okay and that my symptoms were improving, scared that they would force me down a route of treatment that I didn’t want to go down. The reality was the complete opposite. I was now going to the toilet up to 30 times a day, feeling drained and constant cramps and having accidents. Sometimes the toilet bowl would be completely red with blood. It was impossible to go anywhere without the fear of shitting myself, I had bad anxiety about it. I missed a hell of a lot of school to the point where social workers were sent to my house to investigate why I was off so much and I missed pretty much most of year 10 & 11, because of this I did not manage to take any of my GCSE’s.

I couldn’t carry on my life like this, so I eventually gave in and took the Pred and suffered the side effects, but they quickly made a drastic improvement to my Colitis and quality of life. I remember shortly after starting the Pred I went on holiday with my family, a long-haul flight to Florida, I didn’t need the loo once on the flight… It was a miracle! A complete turnaround from the 30 times a day that I was used to. My consultant had also started me on Azathioprine and Asacol and stopped the Sulfasalazine. Everything seemed to be great when I was on the Pred, I had my life back. The hospital tried weaning me off but every time I went below 15 – 20mg a day I would begin to flare again.

I continued this cycle of decreasing and increasing the Pred for about two years! I was fucking miserable, I began to get really depressed and anxious all the time due to the Pred, my mood was all over the place, sometimes I felt like I was possessed. I missed lots of college due to depression and eventually quit, I then got a job working as a hotel receptionist for the next two years but was constantly taking sick days due to my Colitis flares and depression, the long hours and shift patterns made this worse. At one point I was signed off work for 3 weeks with depression, I believe mental illness runs in my family, however, the Pred definitely brought it out in me.

I was prescribed antidepressants, to add to my ever-increasing list of drugs. They took a while to work but now I have been on them ever since and am in a much better place mentally. I quit my shitty job at the hotel after two years there and accepted a new job working in an office, the hours were regular, 08:30–17:30 Mon–Fri, which I believe played a massive part in getting me on the road to recovery. The Azathioprine was not working for me and they were making me feel unwell, so the consultant decided to take me off these and start me on a sister drug, 6-mercaptopurine. (I had a new consultant at this point, Dr Langlands).

Fast forward to 2015, I was happy in my job, the meds seem to have some sort of control over my symptoms, but I was in a continuous cycle of flare, Pred, flare, Pred etc. I’d still not seemed to fully come off the steroids and achieve remission. I tried everything from different diets, cutting out certain foods, taking probiotics, exercising – all sorts of things to try and achieve the elusive remission. After 12 years of active disease it seemed like a myth to me! Dr Langlands decided we needed to try some new drug options: Humira (Adalimumab) or Remicade (Infliximab). She said the drugs have had a really positive effect in patients with a similar disease history to me and thought this could finally be ‘the one’ drug to sort me out. Failing this my future options would be drug trials or surgery (which I am way more open to nowadays anyway).

She had to get approval for me to start the drug and I had to have X-rays and tests to give me the all clear for TB. I decided to go with the more convenient option, Humira, as you can inject it yourself at home every two weeks, opposed to the Remicade which was a hospital trip every 8 weeks to get an infusion. Finally got the go ahead and started my treatment with Humira in June 2016, I was to continue taking the 6-mp and Asacol alongside it.

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Med bin for my Humira

Fast forward again to today and I’m in a really good place, my life is finally back guys! I would say I have achieved some sort of remission… I mean my guts certainly aren’t that of a ‘normal’ person – I don’t think they ever will be for us IBD folk, but I am just so much better. I still have a long list of food that I cannot eat without getting symptoms (I’m particularly looking at you apples and berries!) but have been told that will always be the case. I am now about to go off (in less than two weeks ahhh!) on what will hopefully be the trip of my lifetime so will report on how the journey goes from here onwards! My first stop is a to do a 200 hours Yoga Teacher Training course in Rishikesh, India. Shitting myself (scuse the poo pun) about getting the infamous Delhi Belly and how I’m gonna cope. I will keep you updated on each bit of my travels.

img_9759
Current tablets: Asacol 4.8g daily, 6-mp 50mg daily, fluoxetine 20mg daily, turmeric tablet, vitamin C. Also taking probiotics and Humira.

I’d be interested to read about your own IBD journeys, please let me know in the comments or ping me an email. Has anyone else had a positive response with Humira or what was the medication that put you into remission?

xxx

TLDR Version:

Past meds: Sulfasalasine, Pentasa, Salofalk, Clipper, Azathioprine, Prednisolone.

Currently taking: Asacol, 6-mp, Humira.