Showing posts with label ostomy. Show all posts
Showing posts with label ostomy. 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, 23 October 2017

Eat Pray Love

I haven't actually read the book but I decided to go to India to 'find myself'.

First stop is Rishikesh, in Uttarakhand about 6 hours north of Delhi, where there of lots of ashrams catering for westerners. As far as I can tell, an ashram is basically a yoga training retreat with some meditation and Hindu traditions thrown in. I've been to a few yoga classes back home and have been using the 'down dog' app to practise at home but I do struggle with the bending at the waist - I empty before starting a practice but as soon as a little bit of output or air is in there, the bending squishes my bag and causes leaks. I only brought enough bags with me to change once every 2 days so I will have to keep an eye on this. Especially as the vegetarian diet means more than usual output...
After a few close calls I had the idea of turning the bag 90 degrees so it wouldnt get so squashed - this is the way that stealth belt works and I have brought one of those with me. This helped a little however the most effective arrangement was just to not wear the Comfizz band (that I absolutely always wear so I didn't really think about not wearing it) and have really loose Indian style trousers. It's this that really worked the best.

On another note; white water rafting down the Ganges was a disappointing experience as the rapids were not very wild but the difficult things was, of course, the lack of toilet facilities and the waiting around for Indian organisation and the huge bowl of porridge I had for breakfast that day. My bag had got quite full by the end of the session and I found it difficult to paddle hard for fear of causing a leak.

Monday, 28 August 2017

Surfing

I recently tried surfing for the first time since my surgery. I was pretty anxious because I didn't know how the bag would cope with all the pressing against the board and whether there would be toilets etc. Turns out surfing is a lot of fun, but I found that it's not exactly easy to do with a stoma. The warm up exercises were the first difficulty; many of the stretches were bending over so, like yoga, this often causes leaks for me. It seemed to be ok until we got in the water and it was less than half an hour in when I could feel the Brava seal that I use was coming lose and there would be a leak onto my skin. The actual bag held up though so there was no 'proper' leaking. During the lunch break I found that there were no toilets on the beach so I took a napkin and headed behind the dunes to find somewhere private-ish. It wasn't as bad as I feared.
Then in the afternoon session I could feel my bag getting full again so headed out of the water and took my wetsuit off and thankfully it was mainly air, so I burped on the beach and went back in. Had to change as soon as I got home.
All in all it wasn't easy but a lot of fun and definitely worth giving it a try. I don't think I'm ever going to be able to become a pro surfer though :(

It's me being a surfer!

Thursday, 29 June 2017

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.

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, 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.