Fittleworth

The bags that Coloplast sent didn't arrive in time before I left the kickboxing camp so I got in touch with a few other suppliers and found that Fittleworth has a 'worldwide emergency assistance' program. I don't use Fittleworth at the moment but I'm definitely considering switching to them because it has been so hard to get hold of bags this trip. I've been lucky that my supply has lasted long enough but the emergency service might be essential in future!

Kickboxing part 2

I emailed my contact in the Product Specialist team at Coloplast in the UK who was helping me to try out some new bags while I was at home, and I asked her if she had any contact details in Thailand. She promptly emailed back with her Thai colleague's email address and I fired off an email asking where I could get hold of Coloplast bags, but this was about 9pm on a Friday Thai time and I didn't expect to hear anything until Monday at the earliest. By Wednesday I still hadn't heard anything so I retried my UK contact, who very helpfully arranged to have some bags sent from the UK! I was surprised and very grateful of this generous support.

Comfizz on the other hand were not apologetic or helpful at all about their defective product and simply suggested that I purchase another shield. I had a go at patching up my shield with paper clips and medical tape, which has been somewhat effective - see picture below;

Kickboxing with a bag

As part of my quest to make myself a more masculine man and get in tip top shape for the next photoshoot I've headed back to Thailand to do at least 2 weeks of kickboxing and MMA training. I'm now 3 days into the training and, whilst all my muscles hurt, I have a slight headache from being punched in the head and a few minor cuts and scrapes, the most annoying thing is how difficult it is to get the bags to stay on properly when doing the training. What with the heat and sweating profusely from the training, the bag seems to be coming off after every session. This is causing my some anxiety because I only brought enough bags for using 1 every day, and I might well run out at this rate.

Another annoyance is the comfishield I bought from Comfizz. For those of you who haven't used Comfizz's stoma protection range, there are now two options, the level 3 hernia belt which comes with a stoma guard and as the name suggests also provides support for protection against hernias and their new comfishield which is basically just the stoma guard with a softer base and no hernia protection. You can see from this picture that the stoma guard with the comfishield has holes in whereas the ones that comes with the hernia belt does not. Unfortunately I brought the punctured shield with me and in the very first MMA training, when someone fell on top of me, it cracked right down the middle. I think this is because of the holes.

Jasmine Stacey Collection

My friend Jasmine, who I met when I modelled for the White Rose Collection ostomy underwear photoshoot, produces her own line of super sexy lingerie for ostomates under the brand Jasmine Stacey Collection and has just launched a crowdfunder campaign in order to help her to expand her lingerie line. More relevant to me, this will also allow her to design some underwear for men. I recently tried some underwear from Vanilla Blush, which was fine but nothing special, so I have high hopes that Jasmine can bring to men's ostomy underwear the same combo of sexy allure and functionality that defines her lingerie line.

Colifoam

Every now and then I get some inflammation in the 3 cms of rectum that I have left, I used to keep it under control with azacol suppositories but a few years back I found that hydrocortisone rectal foam called Colifoam worked much better and I only had to use it once a year or so. Unfortunately while I was in India this inflammation started up and I started bleeding from my bum, I went to the small pharmacy in Dharamsala but of course they didn't have any and directed me to the hospital. It's only a small amount of bleeding so I decided it wasn't worth it and that I would wait until I got back to the UK in about 3 weeks time. I got my old GP to send a prescription to my old pharmacy in Canary Wharf and headed over there on the way to crash at my friend's apartment, who kindly put me up for a few days when I got back. Unfortunately the pharmacy had messed up and lost my prescription and later told me they couldn't even get hold of Colifoam, despite being the largest pharmacy chain in the UK. I vaguely remember that someone told me in the past that they had stopped making it. I was a bit concerned as I was only in London for the weekend and wouldn't be able to go back to my GP to get a different prescription for something similar. When I got back to my parents' place on the Monday I tried to get an emergency GP appointment but it turns out that they are even more unhelpful these days than they used to be. They just told me either that they didn't have any appointments or that I would have to come in and fill in some forms before being able to wait for an appointment. Luckily I then phoned around some pharmacies and managed to find one that had some supplies left. Turns out they had loads in stock because they bulk bought it, so I know where to go in a years time.

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.

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.

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!

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. 

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.

Massage, 4/20 and trekking

It was my first full body (thai) oil massage, which I mainly did because a friend was going, otherwise these places make me feel a bit uncomfortable (maybe because of the stoma, maybe I just have intimacy issues)
Anyways I was really annoyed that afterwards I found I had a leak, probably from when I was lying on my front. Apart from the boat diving incident this is the first time I've had a leak whilst wearing the SenSura Mio 2 piece bags. I think I might have run out of them now...
The other notable thing that happened is that it was 4/20 which I'm told is international weed smoking day, so I thought I'd have a bit. I'm not usually that into it but once in a while doesn't hurt. I feel uncomfortable with drugs that completely disable you, which kinda happened -I sparked out in a hammock for a while and hopefully if I'd needed to I could have made it to the toilet, I really really really didn't want to get up! As well as all kinda of crazy thoughts going on in my head and feeling really unsociable meant that I didn't particularly enjoy the session that much.
Finally the last thing I did before heading back to Bangkok to fly home was to go trekking for 2 days in the North Thai jungle (well it wasn't that jungley, it was a national park). This turned out to be a bit of a bad idea because I got diarrhea the night before. One thing I didn't want is to be in the jungle with no toilets, 35 degree heat and an upset stomach. I had to spend 2 days battling dehydration and feeling exhausted. I was super glad that I didn't actually have to 'use' the few toilets that there were available because I don't know how to use a squat toilet!
The diarrhoea continued after the trek while I'd already booked the overnight bus to Bangkok, again not the place you want to use the toilet! And I felt too exhausted when in Bangkok to actually do anything, so booked a super nice, chilled hostel to spend the day before flying home. On the advice of the pharmacist in Bangkok, I bought some oral antibiotics. Thankfully my stomach improved during the flight home so I'm hopeful that it was just traveller's tummy, not the start of a flair up.

Songkran

Songkran is the Thai new year festival where everyone throws water over each other in the street. In recent years it has turned into one big water fight and is loads of fun, especially in chiang mai in Northern Thailand where it lasts a few days longer than in the rest of the country. Water balloons are illegal here so my advice is to bring some with you!

Elephant wipes

I'm running low on 2 piece bags so have been trying to use up the one piece bags. But They are not working for me at all! I dont know if it's the heat but they just leak all the time. I'm getting very good at changing in unusual places. Today I had to change at an elephant sanctuary and I was so glad I had bought wet wipes because there was no water there! Always have wet wipes!

Phone got stolen!

I'm sorry I haven't updated for a long time! This is partly because my phone got stolen but mainly because I've been having too much of a good time :)
Every now and then I have been treating myself to a private room rather than staying in shared dorms and I was super lucky the other day when I stayed chatting in the common area even though I knew I had a leak. When I got back to my room to change I had almost blown through the whole thing! It's so much easier to do a change in a proper bathroom at the sink rather than having to change in shared showers and toilet cubicles.
That reminds me; I didn't bring enough dry wipes with me because I thought I could buy them out here but it doesn't seem like you can. So I bought two packets of baby wipes; one for cleaning up and the second I will let them dry out so I can use them for to dry the skin before applying a new bag.
I went on a half day climbing trip on railay beach, that was really good but I also got a leak that day too. It seems to happen when wearing the sensura one piece so I think I just need to always wear the two piece. That reminds me! I was wearing a two piece that was a few days old, I've started this trick of using [medical] tape to patch up the flange after a few days when it starts to unstick in order to get an extra day or two of wear (they are usually lasting about 2 days without this and 3-4 days with this approach). I was on a boat tour in Ao Nang and dived head-first into the water from the long tail boat. My bag almost ripped completely off! I was wearing the under/swimwear from white rose collection which is pretty tight, so I kinda managed to secure if on just using the waistband of those and my swimshorts, and luckily it wasn't long after that when we stopped for dinner and I changed in the toilet cubicle. I was so glad I had a change with me! I've started keeping individual wrapped changing kits so it's super easy to pop one into a day bag or grab one to change in the shared bathrooms that you get in hostels.

One other thing is that I went to a pool party on Koh Phi Phi, I felt pretty self conscious there in case anyone noticed my under-swimwear. I'm the end no one mentioned it so hopefully it wasn't obvious and I met some nice (drunk?) Canadians to hang with for the rest of the night.

On that note, only two people have noticed the under swimwear

 and asked me what it is; the first one came from a tactless Italian guy, who asked loudly in front of everyone on the boat trip and left me a bit flustered (I'm not exactly confident and experienced at explaining at the best of times) the second one was from a nice bloke called Bob.

Bob: what's that? A stoma?
Me: Yep
Bob: really?
Me: Yep. Crohn's disease.

That's it. Easiest explanation ever.

I'm rambled on for long enough so I'll leave you with one last thought; I'm loving the beday thing (bum gun!) you get in every Thai toilet. No need to use TP just rinse the opening and go.

Long tail drama

Did the 7 islands tour of Krabi yesterday, it was one of the most awesome, beautiful things ever. But disaster struck when I confidently dived head first from the long tail boat in order to do some snorkeling - my Sensura Mio 2 piece bag - which I'd already taped up because the flange has started to come away a bit - got almost completely ripped off when I hit the water!

I managed to tie my swimming trunks tight enough to keep the bag roughly in the right place and I was wearing my white Rose Collection black trunks underneath a normal pair of swimming trunks, so it wasn't easy to tell. Luckily it wasn't long until we stopped for dinner and I changed in a toilet stall.

Also one of the guys on the trip asked why I had something on my stomach area. I'm still terrible at explaining it and he asked in front of the whole boat without any discretion, so I found that difficult.

Humira (AKA keeping cool part 3)

It's impossible to keep the medication cold in a place with no refrigerator. I've been regularly topping the medicube up with ice but it always seems to be above 10 degrees, usually over 20°c, when I check it in the morning, and the ice has all melted. I think I've destroyed about £1,500 of medication :(

Full moon party

Full moon party went without a hitch, the toilets were totally acceptable.

I met up with a friend who is able to work remotely and happened to be in Thailand at the same time as me. He is staying in hotels due to his work so it was great to be able to use his private bathroom to change my bag. He knew someone who used to have a stoma so no awkward explaining was necessary.

I've been getting very complacent with these new sensura mio bags, sometimes I've realised that I haven't been bringing a change kit with me on day trips etc. This came around to bite me in the ass when I went on a day trip to the beach and developed a leak, I had to put up with a really uncomfortable itch for the rest of the day and my skin got really sore. Hopefully that is a lesson learned!

Now I'm staying at a muay thai training camp. Will update about how that goes!

Scuba 3

Been Scuba diving yesterday and today, it's great that I can do it but it's more tricky with my ostomy. First of all I can't really empty my bag while out on the boat, as the toilet goes straight into the sea, so I've been taking a loperamide to slow things down a bit.
Secondly all the movement and the weight belt resting around that areas has been causing leaks and now my skin is quite sore. Not fun.

Scuba 2

I got a medical sign off from the local Physician, and did it today, with no problems. Woop!

Scuba

Just tried to book a Scuba diving refresher course, I didn't really think about how the ileostomy might be an issue- if farts fill the bag up it could expand on the way up and blow the bag off...
Need to get signed off by a doctor.

The train to Koh Tao

You haven't emptied your bag until you've emptied it on a Thai train. But seriously, this was a great experience for me- I learned 3 things.
1. Try to always carry toilet paper with you
2. Experience of using the water hose that they have in Asia (called the 'bum gun' apparently!)
3. I can cope with it and I survived! No need to be anxious about these things any more. (Seriously, when I went to India last year I was so concerned about using the toilets when out and about that I hardly drank any water, probably it could have been quite dangerous)

Side note: Big shout out to sensura mio. I've only changed once so far on the trip- it would be much harder with the old bags I used before

Just changed

I just changed my bag in the communal dorm's shower room. Travelling with an ostomy isn't the easiest thing, especially not when staying in hostels

Keeping cool part 2

Met a kazakh guy at the airport who also hadn't booked a hostel yet, and headed to the Koh San road. Found a place called the green house which looked pretty basic but had a bar and looked friendly. I had topped the medicube up with ice from the plane so I figured I could just keep doing the same with the ice from the bar.
Woke up about 6.30am as I had to empty my bag and I saw the thermometer was reading over 14 degrees. So I might have spoiled all that humira already...
I didn't book a hostel in advance because I read or heard that there is much more choice on the Khao San road than you see on the Internet. I'm now thinking that might have been a mistake and I should have booked somewhere that said it had a fridge freezer as one of the facilities.
I'll do that tomorrow

Flying to Bangkok

I had a few things to sort out before I left (completely clearing out my flat!) so I'm writing this on the plane to Bangkok! A girl across the way is so drunk (or on something) that she tried to kiss the lady sitting next to me, and is being restrained by the crew, so that's a bit of a distraction...

Below I've put a photo of all the ostomy supplies I've brought with me, there's quite a lot of it and it fills most of my backpack to be honest - not much room left for anything else.

Here is my total packing list for this 62 day trip:

3x asthma inhalers

10 syringes of Humira in the iCool medicube (I suddenly thought when queuing for security that the large frozen packs might be classed as a liquid and not be allowed through but I was relieved when they passed through the machine with no questions)

About 96 tablets of azathioprine

Ostomy supplies:

  - 30 x sensura mio 1 piece bags

  - 15 x sensura mio 2 piece base 

  - 30 x sensura mio 2 piece bags

  - 20 x oakmed standard bags (these are the ones I used to use and have brought as a safety net)

  - 30 x cohesive slims

  - 30 x cool plats brava rings

  - 60 disposal bags

  - 1 pack of dry wipes (I figure I should be able to buy these and they are bulky so I didn't want to bring more)

  - 60 x adhesive remover wipes

  - scissors

  - 3 x 'bed pad' mats 

Sunglasses

Sunscreen

Sleeping bag liner

60 pairs contact lenses

Padlock

6 x underwear

5 x socks

3 x comfizz level 1 support band (I wear one of these all the time)

2 x comfizz level 3 hernia support band (includes protective guard for when I'm doing kickboxing training)

1 x stealth belt

Lonely planet guide

Mosquito spray

Trainers

Jogging bottoms (aka sweat pants)

3x shorts

3x tshirts

2x trunks

A sweater

Toothbrush

Toothpaste

Soap

iPad

Earphones

Spare phone battery

Earplugs

Phone charger

GoPro

2 credit cards

Under clothing wallet

Dioralyte

Loperamide

Hand sanitizer

Electric plug adapter

Travel pillow. Although it's quite bulky - I might regret bringing it

I hope that's enough!

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!!