Sunday, 31 July 2011

A day of ups and downs

We were dog sitting for a friend today, so loaded the two hounds, the kids and a picnic into the car and set off for Hastings.  Had a fantastic walk through Fairlight Country Park and along the coastal path east of Hastings. We walked about 5 miles and it was pretty challenging terrain with plenty of ups and downs. Nothing like the lake district of course, but enough to make my untrained legs turn to jelly! 

Stunning views and a gorgeous day and I felt great.. each day brings more stamina and less fatigue.  I feel like I'm progressing and am now a 'recovering person' rather than an 'ill person'.

On the way home we stopped off for an ice cream and to let the boys play on the beach for a while when I suddenly felt the start of a dreaded leak from the bag. To say that this is a bit of a grim emergency situation and needs addressing immediately would be an understatement.  Luckily I had some spares and kit with me and could sort it quickly. However, it's normally something that is done in the privacy of my own bathroom, not standing by the side of the road sheltered by the car door!  The boys watched with a mix of interest and repulsion... 'It's kind of gross and REALLY interesting all at the same time' was their take on it.

A slightly irritating end to what was a great day though.. leaks do happen from time to time, but you need to learn how to prevent them really. What would I do if that was mid race? or at some fancy party? would the bag last for the length of time it would take to do a Half Ironman? or even an Ironman... Anyway, I just need to figure out what caused it and try to avoid it happening again.  I WILL be in charge of this thing! 

Saturday, 30 July 2011

19 days post surgery

I feel like shouting from the rooftops I feel so much better! I have this overwhelming feeling of relief and happiness I can't describe. Not quite 3 weeks post surgery and I'm able to eat a normal healthy diet that includes fruit and vegetables - something I haven't been able to do for the last 9 months and it's SO exciting!  I have this renewed inner energy and vibrance that's been missing for so long. I'm starting to feel like 'me' again.

Only yesterday we were driving in the car with the kids and I was singing along to Michael Buble on the radio (and I don't really like Michael Buble) and eldest son says 'Wow Mum I haven't seen you this happy in ages!'

Hindsight is a wonderful thing, but now I'm beginning to recover and feel so much better, I look back over the last 9-10 months and wonder how I coped feeling SO awful all of the time.  It's quite liberating, and already I'm so grateful that we made the decision to have this surgery.

In a moment of excitement (or madness) I have entered Brighton 10km... a sure sign that I'm on the mend.  Just the thought of feeling well enough to even contemplate it brings tears to my eyes (in a good way).  It's not until November so I have plenty of time... I have no clue how it will go, how I'll feel or how much 'training' I'll be able to get in before then. I'm hoping that lovely hubby with run with me for moral support.  It won't be easy though, I'm starting from scratch all over again... 

The bag is the least of my worries to be honest. I am probably the most unfit I've EVER been in my entire life and having had four major operations over the last year, my body is in tatters.  Just walking up a hill I can feel my ITB tweaking and making my knee hurt - not a good start!  So the plan is to get the groundwork done first - build up some core strength and flexibility again before I start pounding the miles. 

But I can't wait to get out for my first short run.. am hoping that might even be in a week or so. There's a brand new pair of K-Swiss trainers sitting in my cupboard upstairs which have been waiting for this moment. Exciting times!

Friday, 29 July 2011

The whole story.. from the start

In the summer 2010 I was training for Ironman Copenhagen - a 2.4 mile swim, 112 mile bike and 26.2 mile run. I'd built up to it after a few years of competing in triathlons and running marathons.  An Ironman is a challenge for even the fittest triathletes and a huge achievement if you make it.. most don't even make it to the start line.

Considering my hectic schedule with 2 lively boys and lack of work/life balance, training had actually been going remarkably well. I was at the point of being able to ride about 70 miles and then go straight to running 6 miles and it was building up nicely. I'd been working really hard on my swimming and I was starting to feel confident and excited about making the start line in August 2010. I had done a Half Ironman in Weymouth on 6th June 2010 and really enjoyed it, coming 5th in my age group and storming on the bike finishing in 5 hours 18 minutes. I was secretly hoping for a sub 12 Ironman. 

We had been camping with the kids in Weymouth before the race and I do remember waking up in a clammy sweat on race morning, thinking 'hhmm that's odd' but then heading off to swim in an ice cold sea at 6.30am anyway.  I'd also had some strange abdominal pains, but had been checked out by the GP and a gynae consultant who all declared it to be 'fine'. Now with hindsight I look back and realise these were all the warning signs.  In fact if I'm honest there had been many other signs.. sporadic and severe abdominal pain and 'bowel' changes which I'd just ignored. 

On the 13th June 2010 I was rushed into the Kent and Sussex Hospital in the middle of the night with severe abdominal pain, with the poor kids in tow having been pulled from their beds. When the triage nurse asked me on a scale of 1-10 how bad is the pain? I said 11. 

That 'abdominal pain' turned out to be life threatening peritonitis which had occurred thanks to perforation of my colon due to diverticulitis. I had no idea I had diverticulitis and had never even heard the word before. It's also very rare in the under 40's hence why none of the doctors had suspected it.   I was very poorly and had to have emergency surgery that night.  The amazing consultant made the right call and saved my life by doing surgery straight away.  He was very conservative and was hoping he might save me from another major operation, opted to treat me with gallons of IV antibiotics and crossed his fingers... we hoped!

5 weeks later I was still unwell and in pain and a CT scan showed a huge abscess on my colon.  So on 1st August 2010 I had to have an urgent operation called a partial colectomy which removed my sigmoid colon (about 14 inches in total) which also involved a couple of days in intensive care as it was such a major job. The surgeon had given me a temporary ileostomy** while things healed. When I first saw the stoma and the bag I felt sick and the first thought that came into my head was 'if I don't eat anything, there'll be nothing in the bag then it won't be so gross', but quickly realised if I had no choice to accept it was there and get on with it.. and to be honest I do rather like eating. There was also the incentive that once I could prove to the nurses I was capable of coping with my new 'friend' on my own, they'd let me go home.

Anyway.. I decided that as I'd have this thing for a couple of months a more positive approach was called for. I was keen to prove this stupid little 'bag' wouldn't stop me from doing anything. I managed to get fit enough to run a 10km race only 8 weeks after surgery and even thought it was about 15 minutes slower than I might normally do, it was a huge achievement. 

Just before operation number 3 (the reversal of the stoma) in October 2010 my surgeon asked me how I felt about it and how I'd feel if he couldn't reverse it... just hypothetically speaking.  I remember saying 'it's a minor inconvenience and doesn't stop me doing anything'.  I didn't know then how pertinent that reply would become.

So the reversal was done, I was 'plumbed back together' and ready to get back to normal. Although I didn't feel normal at all.. far from it. I felt terrible. I was horribly bloated, felt really sick most of the time and dare I say it, awfully constipated. It felt like nothing was working inside and there was no nerve function. I'd been warned to expect the opposite so this was quite a shock, and not just to me.. the surgeons and doctors were left scratching their heads too.

This went on for months, and I had more tests than anyone should have in a lifetime and far too many tubes inserted in places where they shouldn't be. 10 months of misery, gallons of prescription laxatives and three different consultants later and they finally decided I had something called 'colonic dysmotility'... probably caused by the initial infection. It sounds fairly non-specific, but believe me it was utter misery. I felt terrible, couldn't exercise, could hardly eat and spent most of my days sobbing and in pain.  They tried me on a brand new 'only just licensed' drug called prucalopride, which was supposed to stimulate the colon, but it did very little.  So after months of researching online and soul searching I asked my initial surgeon to put the ileostomy back. It went something like this 'I felt better with it before, so can I have it back please?'.. a huge decision to make but I didn't have much choice. Carry on living a life of misery at about 50% or have surgery and become a 'bag lady'.. (by the way, I'm allowed to call myself that but no-one else is). I'd read about people with an ileostomy on the internet who had scaled Everest, run marathons and did Ironman triathlons.. could I do the same? would it make me feel better? could I get my life back?

So on the 11th July 2011, my new permanent ileostomy was formed.  Within just a couple of days I knew I'd done the right thing. I felt so much better, the pain and discomfort had gone. Yes I was sore from surgery, but the bloating had gone, I felt like I had more energy and looked better almost straight away. I could eat ! and sleep! and wasn't in pain. Within weeks I was feeling fantastic and knew that my new 'friend' was going to be my best buddy.. this was the turning point. I don't see my stoma as the end of the world.. far from it. I see it as the start of my new life and I can't wait to get on with it.

** An ileostomy is a procedure to bypass the colon (large intestine) and it brings the small intestine out through a hole in your stomach wall (nice!).  That hole is called a stoma and the 'new' end of your bowel instead of.. well your bottom basically. Someone with an ileostomy has to wear a 'bag' over the stoma to collect the 'output' for want of a better word, or more technically the poop...