Showing posts with label ileostomy. Show all posts
Showing posts with label ileostomy. Show all posts

Friday, 3 November 2017

Zen and the art of sitting on the floor

After yoga and Hinduism I decided to stay in a silent Buddhist retreat in Dharamsala, learning how to achieve enlightenment. Ideally I wanted to do Vipassana but the places were sold out and earlier in the year I was recommended that I do this in England because it would be more comfortable. So this Buddhist retreat, called Tushita, sounded like a good alternative, and was better in some ways because it was only 7 days long, so less intense for my first meditation retreat, and we would be allowed out of the camp to go to the Dali Lama's teachings which were happening at his temple on 3 days of the course. During the application process for Tushita I wrote that I had a physical disability but it didn't ask for any more information than that. On registration day, just before the rooms were allocated, with 125 people huddled around, the course administrator asked if anyone had any medical conditions and again, just like at the white water rafting over a year ago, and before the breakthrough of cycling naked, I didn't raise my hand or say anything. It's weird but I didn't think until later that I might have been able to bag myself a really nice room by speaking up. When I got to the room allocation desk I was probably about halfway down the list. I asked if I could get a bed 'close to a western style toilet' and thankfully there was still one bed left in the 'garden room' which only had 2 beds in it. When I got to the room, the other guy who'd got there first had taken the bed that was reasonably comfortable looking and I had to take the mattress that was sunk to nothing and as hard as wood to sleep on.

In the gompa, which is the name for the meditation room, there were a few chairs and I managed to bag one for the first session while everyone was still in the confusion of a new territory, however by the second session my chair had been taken and I was relegated to the more usual sitting position of crossed legs on a cushion on the floor. Spending 4 to 6 hours sitting on the floor is not easy, I'll tell you that, and after a few days it was pretty uncomfortable.

The morning and evening silent meditation classes were somewhat nerve wracking as well - 125 people in a silent room and I knew at any moment my stoma could make a loud farting noise! Thankfully there weren't any particularly embarrassing occasions but the anxiety was there most of those times, making it difficult to meditate effectively!

Despite these inconveniences I found it interesting that most of the time I spend at the retreat I  felt somewhat contented and happy. This is prett unusual for me as am I often discontented or unhappy about something. I don't really know if it was the tranquil surroundings, the lazy days, or the fact that I could be around other people without being required to talk to them, that made me feel content but whatever it was, it was nice. Oh, and I enjoyed seeing and hearing the Dali Lama teach too, but I didn't really understand much of what he was saying, the main idea is that we should all be more compassionate to each other, which is something I can get on board with.

Next up, I'm heading back to Thailand for the Autumn/wintry months to get away from the cold and to do more kickboxing training.

Monday, 28 August 2017

Update

Since the naked bike ride I feel like a new man. Just a few months ago I felt so insecure and uncomfortable telling people about my bag but now I feel comfortable getting it out at the lido, the beach, skinny dipping, wandering around a shared room. I can talk about it without embarrassment and sometimes I initiate conversation about it. On a personal note, I've started to feel like I'm educating the female half of the world about ostomies one at a time ;)
If any of you out there are struggling with your body image and insecurity like I was, I recommend talking about it to safe people and then getting it out as much as possible,  a little at a time.
Regarding the travels, I've been hanging out in Europe, not really travelling around that much but hitting up a few places in between being in the UK. So far I ticked off Estonia, Latvia, Istanbul and Portugal, heading to Spain next then I've booked a flight to India in September. The plan is to 'find myself' there. Updates on that to come!
In the UK I've done a few cool things, went to the purple wings ball and met lots of fellow ostomates, including Stephie who asked me to write for her blog here.
I also did some hypnotherapy, meditation, yoga, an NLP workshop and and a social freedom day to help me be more confident. 

Monday, 13 February 2017

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.

Tuesday, 24 January 2017

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!!

Wednesday, 21 December 2016

Modelling Swimwear

I did an ostomy underwear photoshoot last week for White Rose collection  (http://www.whiterosecollection.com/), where I met some fellow ostomates who told me that they wear the same bag for several days at a time! I always find that mine leak if I wear it for more than about one day. It would make travelling a lighter easier if I could wear the same bag for several days at a time! So today I resolved to look into new products - so far I've ordered some Brava rings, Brava paste and Sensura Mio bags.

I also got some really well-fitted swimwear for keeping everything flat to the body when swimming - http://www.whiterosecollection.com/Men/Swimwear/Items/CO1229/Fitted-Swimtrunks


Wednesday, 7 December 2016

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!

Monday, 28 November 2016

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.