Thursday, 12 January 2012

The Pros and Cons of being a 'bag lady'

It hardly seems possibly that I've been living with my ileostomy for 6 months now. Life is very much 'back to normal' and the crazy juggle of kids, training, life, dog walking, work and all the other various commitments are keeping me busy to say the least.  The bag really just fits in with my life and for the most part I forget it's there.. luckily the operation has worked really well and I'm feeling much better and able to cope with 'normal' life again.

There are moments however when it itches or annoys me and I just want to tear it off. There are times when I find it pretty repulsive to have a bit of bowel sticking out of my stomach.... well you would if you thought about it too long!

But I have to push those thoughts aside and remember what my health was like before.  Over Christmas I found a letter I wrote to my surgeon back in May last year before I had the surgery.. here's an excerpt from it:

...things are no better.  In fact I feel absolutely terrible most of the time.  I have no quality of life, am not working and can’t train. The most I can manage is a dog walk and shuffle around my beginner running group.  This is mainly due to the constant bloating, distention, constipation and nausea.   My diet is very limited as I cant’ tolerate fruit, veg, fibre, meat or even a sip of alcohol – and there are days where I have to resort to liquids or ‘mush’ food just to get through the day.  I got to the point where I was taking 10 senna every day and it did nothing.  Once or twice a week, I get to the point where I cant’ sleep I am so uncomfortable and spend the entire night awake, distended, feeling sick and miserable...

When I'm feeling grumpy about having the bag - which to be fair isn't very often - I just have to re-read that letter and it puts things in perspective. It sort of reminds me of childbirth or marathon running in a way. The memory of the pain and discomfort rapidly fades and you find yourself thinking 'oh that wasn't so bad'. I'm glad I've got that letter as it's a reminder of how bad things really were and why I'm where I'm at.  In some ways I wonder how I managed to get through that time.. it was really rough.

For the most part I'm feeling pretty good now. I don't think my digestion will ever be 100% again.. but I'm certainly a lot better than when I wrote that letter. I have a few food issues which have caused some minor blockages which make me feel quite unwell. Sweetcorn, mushrooms, beansprouts, green beans, bamboo shoots and nuts are all off the menu.. as well as high fibre foods and large meals. Alcohol is tricky.. half a glass of wine and I have a headache the next day! I'm becoming and expert in 'low alcohol' choices and spritzers.  I'm not sure, but guess that's something to do with the colon which assists the liver in detoxification. Without an active colon my poor liver must be under more strain. Not that it's an issue, just an observation really.

I still seem to need more recovery from a training session that I used to take for granted, and find it hard to cope with late nights and need more sleep.  Of course that might have nothing to do with the stoma and is just old age! I'm hoping that will improve as my fitness and health returns..

On the plus side however.. I'll never suffer from runners trots again. The bag does have its advantages for long runs :-)

Talking about running, my training is a bit hit and miss at the moment. Just before Christmas I was thrilled to complete a 9.3 mile run - my longest since June 2010 - and I was feeling really hopeful about taking part in the London marathon. I've signed up for Silverstone half marathon on 11th March and was hoping to build steadily for that.. and then onto the marathon in April. Well maybe..

But since then, my right knee has been niggling.. sigh. Probably due to muscle imbalances caused by surgery, bed rest and postural changes. And despite pilates, core work, stretching and sports massage, there's a still a problem. So it's back to the drawing board. It's one step forwards, two steps back as always and it's going to be a long battle. I have a feeling I'm going to need to dig deep into my reserves of patience and perseverance if I'm going to win it!

In the words of Winston Churchill 'Success is not final, failure is not fatal: it is the courage to continue that counts."


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