London Naked Bike Ride

A beautiful girl has told me recently that I 'should' be more confident, less insecure about my bag and care less about what people think. So a few days after that a friend mentioned that the London naked bike ride was happening soon, I thought this would be a good opportunity to get right out of my comfort zone and get my bag out in public and hopefully get more comfortable in my body.
To start with, this was a useful conversation to have with my friend because his ex, who I also know, has a bag and this is another ostomate that I now know in London (I am hoping to start more of a community here).
Secondly, of course I was anxious to first take my clothes off, I think most people were, but I particularly noticed that a guy pointed at me and I assumed he was pointing at the bag and saying to his friends 'look at that wierd thing' or something like that. But the twist is that the guy came over to talk to me later in the ride and told me that I am really good looking and he was pointing at me to tell his friends how hot I am! Talk about challenging my beliefs!
Next I told a journalist my story whilst we were riding and I explained that I was doing it to be more comfortable with my body. He seemed to be relatively interested in my story.
The rest of the ride was fun, but pretty uneventful, no one else mentioned the bag to me.
Overall I'm glad I did it but we'll see how much difference it makes to my confidence and self acceptance.

Preparing to Leave

Less than 2 weeks before I fly to Thailand!! Super excited (and apprehensive!)

Here's what I've been up to:

• Got myself a Thai tourist visa
• My flat is all packed up, all my stuff is in storage
• Lots of goodbye lunches/coffees/drinks with various friends
• Received a very large supplies order, containing my new favourite bags (more below!)
• Asked GP for a large prescription of Azathioprine
• Received a large order of Humira
• Spoken to consultant and stoma nurse
• Tried an improv class

Still to do:

• Get Loperamide and Dioralyte
• Travel insurance
• See my Bro
• Do a final pack of my backpack

It has felt very busy!

I saw this great guide from the White Rose Collection about going on holiday that has some good tips and advice: http://www.whiterosecollection.com/Articles/Holidays-With-An-Ostomy. It also links to this article about the World Assist Alliance, which I never knew about before.

I tried using the SenSura Mio mechanical 2 piece bag last week and I was super happy that it lasted a whole 6 days without needing to be changed (and could have lasted longer as there were no problems when I changed it). I think it's because the mechanical part keeps the bag away from the stoma, helping to reduce potential pancaking. So I ordered a few to take with me - if they always last that long I will only need to change 10 times in my whole trip! The only problem I have is that the opening is a bit more tricky (can be a bit messy) then other bag manufacturers.

If I've forgotten anything I need to do, or if you have any tips on Coloplast bags, let me know in the comments.

Medactiv iCool Medicube

  

My iCool Medicube arrived! It looks like it will be good for the job - it has plenty of space for at least 12 syringes, but with the added ice packs it is quite bulky - I've shown it here with a £2 coin for reference. Also it's not very easy to carry it around using the attached straps so it would be easiest to put it inside another bag.

The experiments with Coloplast Sensura Mio bags went well and they do seem to be able to last longer than the bags I previously used (Oakmed) so I will take a few of each with me to Thailand. Getting excited!!

Keeping Cool

Apart from how I am going to carry around 2 months of ileostomy supplies, one main concern is how I am going to keep 8 to 10 pens of Humira cool when traveling on the plane, between hostels etc. (is there always a refrigerator that guests can use in hostels??)

First I had a call with my IBDN a few weeks ago, she said she knew a girl who went travelling who found a really good cool bag, but wasn't able to give me any more details on where it was from, what kind etc.

So I've been looking on Amazon, and I think I've decided on one of the following three choices

iCool Prestige Medicine Travel Bag
https://www.amazon.co.uk/dp/B009PMI0AQ/
Pros: looks pretty compact
Cons: might be too small



MedActiv MediCube for transporting temperature sensitive medicine
https://www.amazon.co.uk/dp/B010DG84TE
Pros: definitely large enough, looks pretty industrial in terms of keeping things coldest for longest
Cons: might be a bit too big, expensive


MediGenix CoolMeds 2 - 8°C Bag for transporting temperature sensitive medicine
https://www.amazon.co.uk/dp/B00XPPHOI8/
Pros: has a in built thermometer
Cons: might be too small

Also, I'm using Humira pens, maybe I should switch to the self-injections because they are smaller?

Let me know if you have any thoughts/advice!

Pilot

Hi!

I'm Mark, I'm 31, from the UK, I have an ileostomy due to Crohn's disease and I'm going travelling!

I have to inject Humira once a week (has to be kept less than 8°C) and I have to change my ileostomy bag at least once a day most of the time (more if it's hot weather), so backpacking with all that stuff is going to be tricky. Not only that but some countries have 'toilet difficulties' if you know what I mean!
Because of the weekly Humira, I was told by my IBD nurse that I should probably only be away from the UK for up to 3 months at a time, which at least for my initial trip I am limiting to 2 months just in case. After that I will pop back to the UK for a top up.

I thought I'd write a blog with my thoughts, in case anyone else is thinking of going travelling with an ostomy and wants some details on the difficulties/experiences.

My current itinerary:

1) Quit work.
2) Go skiing (probably Austria).
3) Thailand!
4) Japan/China
5) Europe

First thing I need to do is get a cool bag to keep the medication cool on the journey. I will update on this soon.

Let me know any questions/comments or any advice.