Living with a Stoma THE CHANGE ITCH & THE OSTOMIST SIXTH SENSE

Hopefully if you've read my blog "what the hell is a stoma" you’ll have a very clinical idea of what they are. I have been thinking on how can I describe life with a stoma to someone that doesn’t have one. My life has been better since my ileo/stoma addition but that doesn’t mean it has been easy. It has changed many things in my life and to list them all would be immense (and probably a bit boring!) So I have chosen to share a couple of insights at a time.

Initially its probably a good idea to explain exactly what my stoma bag is. In it's basic form it is just that, a bag! I assure you though they have allot of tech in them. Carbon filters, skin care adhesive, plus even the bag itself has multiple layers to avoid leaks and tears. But ultimately it’s still a bag. Hard to describe so here is a pic.


Flesh coloured for added camoflague ;)

The stoma bags are very high tech appliances. However, they are not flawless. A very real concern is adhesive failure. This can be from faulty adhesive but more commonly from bad application. A small ripple or fold when applying the bag can allow output to slowly seep out. There are early warnings. It’s only over the last few years I heard a phrase that affectionately describes this.

1) THE CHANGE ITCH!!!
Fellow ostomists will hopefully understand ;)

Basically when a leak occurs they are often slow leaks (rather than a total bag failure or 'blowout'. Trust me these are a whole different level fo fun!) With my Ileostomy the output is very acidic and therefore as the leaky output comes into contact with the skin around the stoma site an itchy feeling occurs. Unfortunately this is actually the output burning my skin :( This is a trigger to change that bag!

I have left this in the past and the skin around the site become red, sore and inflamed. In extreme cases this has also created a knock on effect for a few days. As the skins repairs itself and the burns 'weep' the adhesive can fail, causing more leaks. I’ve learnt now do not ignore the change itch This use to happen allot, until I was recommended Stoma collars. These handy little additions have drastically reduced my 'change itches' I highly recommend them.


2) THE OSTOMISTS SIXTH SENSE
The other less obvious side effect I have found about having a stoma is a new found ‘sixth sense’ I am not saying that I see dead people or anything like that. I have developed a skill for finding the nearest toilet! As my bag has a finite capacity and I personally do not like to let it fully fill up I find myself emptying 7-8 times a day. You can get 3 sizes of bags mini, midi and maxi. Again I personally find the midi more comfortable and an acceptable trade-off for capacity. I can almost walk into any new building or restaurant my sixth sense triggers. It’s almost like I can’t settle until I know where they are. I have very little in the way of issues but it’s a habit I can’t avoid!

So there you go a small insight into life with a stoma actually. From a very practical and more personal perspective.

Welcome to my world!

2014 is turning into quite a line up already. Parliamentary reception, articles and front cover of Beating Bowel Cancer patient magazine. A recent visit to Clinimed ( my stoma bag suppliers) blog post coming soon ; )

Everyone jokes but its almost like a full time job!! Stil very honoured that my ramblings and experiences can help or even inspire others. With all the excitement and potential I dont want to forget why and how I started all this. For me, the last 12 months have improved my health. Im training 5 days a week now and lifting over my own bodyweight in squats and deadlifts!!!!

But thats not it I can honestly say that may be how it started but now I love these races. Lactic almost 12 months ago was when it all started. This was that catalyst, for my current journey. Training is the prep so I can complete these events (safely)

My aim for 2014 is to help where I can and raise awareness for bowel cancer and ostomists. I find the 2 impossible to seperate. 2014 is the year I feel like I can give something back. I wish I had access to the support groups like ostomy athletes lifestyle on facebook 7 years ago! Its a diverse group. Yes many posts are about sport, running etc. But it develops into far more than that. I have made new friends. Friends who understand how and why some days things get tough. Why I can feel down although to the rest of the world I look strong. I cant wait to meet some of these people at Thunder run in July!! They have helped more than they will ever know.

Perhaps its because my first mud run anniversary is coming closer, but reflecting has reminded me, yes these races are tough, but GOD THEY ARE FUN!!!

Its always been hard to explain what they actually are, so my lovely wife purchased me a waterproof camera for my bday...so now you can see what I see ; )

Below is my first attempt at the recent Nuclear Trial.  Welcome to my world, hope you enjoy 

 : )

http://m.youtube.com/watch?v=DkMrI2xiZ6o

Do not underestimate the power of music

Weird how on my way to Be Loud event on the train my mind was wandering.
I had decided to take headphones and listen to some tunes as train journeys can be boring on ya own.

Listening to one of my favourite albums I found my spirts lifted. Music really can provoke an emotional response. 

This then triggered a memory from my first year or so after operation during councelling. I wasnt suffering from panic attacks in the conventional sense but at times my coping mechanism and armours failed me. Roger my Mcmillan councellor had recomended having my ipod loaded with a few 'feel good' tunes. When I felt my armour being tested I could dissapear and listen to these one or two songs. I didnt know then but this has foundations in NLP neruo linguistical programming.

In simple terms memories are often triggered by sights sounds or smells. Memories of a beautiful summer can be triggered by the smell of cut grass. Your partners special perfume instictively makes you think of them.

Well it works. Load a song thats special to you. One that brings back a special memory of an occassion or a loved one. Next time you get overloaded just take 5 and listen to it. 

My song is one special to me. The song of the first dance at my wedding with my wife. Even now I use this song to slow the world down, remember the important things and question is the reason why im overloading really going to effect the most important things in my life??

Love you baby xx

The journey has only just begun

Hi all,

2013 was about pushing myself to new limits of physical and mental strength. In 2014 my ambition is to give something back. This doesnt have to always be monetary as awareness of sysmptons to me is just as important.

Its been a mad journey since my first race and starting this blog (sometimes I am struggling to keep up!)

Anyway this is where it all began, please share the link to this blog. www.mudbagrunner@blogspot.com

My hope is if one of my stories, my rambles could help raise awareness. The feedback I have had so far has been humbling so if it can help one person on their journey, or raise awareness then its all be worthwhile.

Full circle

Last week was my annual check up. Things didn't go according to plan. The few days that lead up to my check up had been stressful. This had obviously started the remainnig colitus in my stump to flare up. I suspected that the endcospy would be uncomfortable, however, I hadnt expected this level of discomfort this quickly. The specialist realised that the pain was disproportionate to the procedure and decided to stop.

For those who have never had the proceedure an Endoscopy is where a camera is inserted to check the inside of your bowels and take biopsys of inflammed areas. I am sure any good google or Bing or wikipedia search will be able to do a far better job of explaining it than I can.

What these searches may not tell you is that as you lay on your side facing all the equipment. you also have the pleasure of facing the same screen that the surgeon sees when inserting the camera. I again have the pleasure of seeing parts of the inside of my body. A luxury that you never get bored with ;) Seeing this confirmed why the pain had been so intense, my stump was inflamed ulcerated and very very sore!

I felt bad that I had to cancel the procedure and also annoyed that I would have to go through this all over again.

Anyway enough of my medical history on to the real topic. Before the procedure as I am now becoming almost on first name basis wit the specialist and endoscopy nurses I mentioned this blog and the charity work that I have recently been involved in. The nurse mentioned that after the procedure she would try and introduce me to Karen the bowel cancer nurse who is also involoved in raising awareness. As I sat in the recovery room annoyed, frustrated and a bit emotional,  Karen arrived.

It took us both a few seconds to recognise each other but Karen was the nurse all those years ago that was there the day I was told I had Cancer. That day is still a blur. I'll be honest all I recall is laughing. A weird reaction right?

We chatted for a while. It was as I discussed 2013 with her and the planned activities for 2014 that I once again realised how much I have achieved. It was perfect timing after tge failed procedure and possible UC flare up. Its these reflections that drive me. 2014 is shaping up to be epic. Parliament next week, more OCR events and some interesting conversations with my stoma bag suppliers ; )

The past shapes who we are today, but right now WE have the ability to shape our future.

Deja-vu

Why is it when you buy a new car while you are waiting to take delivery all you see on the road is that exact make, model and colour. Well with my endoscopy annual check tommorrow all I seem to hear on the Tv or Radio is adverts about Cancer!

Don't get me wrong I am not against the publicity, far from it. This year my main goal of all my activities is to raise awareness. It just as per my last post this check up brings back far too many memories. (Anyone that has been touched by such an illness may agree with this next statement.) No matter how many times the doctors, nurses or other medical experts say it you never beleive that the Cancer has fully gone. I think its perhaps loss of faith in your body?

I know for me up until that point I hadn't really taken much notice of the noises or warning my body gave me, youthfull ignorance? Depending on my mental 'high' or 'low' days like tommorrow can be a real challenge. There is no logic to my concerns. No symptons that would suggest anything 'nasty' has returned. Although it is gauranteed tonights sleep and the time spent in the waiting room tommorrow a nagging thought will be bouncing around my head... WHAT IF??

I cant fault the NHS however, they are always polite and 'mostly' on time with their appointments. Its just there is also an aggonising wait of almost a week till I recieve a letter telling me 'all is ok'
As I just typed that sentance I could even feel my stomach turn at the thought of recieving 'that' letter.
I am sure all will be fine and whatever will be will be, Ill adapt, evolve and overcome, same as always ;)