Wednesday, 14 November 2012

Recovering... again!

2 years ago this weekend we threw a 'Sarah's Better' party after my ileostomy reversal. Ha! How's that for irony. Since then I've had 3 further operations (so that's 5 in total)...  I still have an ileostomy and at the moment am recovering from the biggest operation of them all.

So, I'm 16 days post surgery now and thought I'd pick up my blog again. It's a bit like deja vu, as I started writing this blog 2 weeks after my last surgery... 'to  record my return to fitness and health'. Hmmmmmm..... 
Wine list at the Princess Grace Hospital!

Surgery on 29th October went well.. or as 'well' as major abdominal surgery can go I suppose. There were no emergency complications and after 2 days in intensive care and another 6 in hospital I managed to escape back home. I have an 8-10" incision and a new ileostomy. I was in hospital in London (Princess Grace) which was fantastic (sadly I never got to sample the wine list though!), albeit a logistical nightmare for my hubby and family as it involved a 2 hour trip from home. I didn't see my boys for 7 whole days which is the longest I've ever gone without them. As always however, my amazing hubby, mum, family and friends all rallied around, walking the dog, visiting, sending texts, flowers and washing and ironing etc etc.. I'm so lucky to have such incredible support... thank you all! We simply couldn't do it otherwise. 

The surgeon repaired my 'non working' stoma and gave me a lovely new one (I think he was quite proud of his handiwork). He found multiple and major adhesions (think 'kinked hosepipe') behind the old stoma which was causing all my problems as well as a significant narrowing of the opening itself. Whilst he was there he also reconnected my colon to my small intestine.. just in case I fancy trying a reversal any time soon. Hmmmmmm.... 

All in all it was the biggest of all the surgeries I've had, and so far I'm getting the feeling that recovery is going to take much much longer. A quick flick back in my blog and 2 weeks post surgery last time I was taking my boys swimming. Swimming?!?! was I mad? The most I can even contemplate this time is a little shuffle with the dog and a few core stability exercises. Can't imagine swimming for quite some time yet. 

There have been a few ups and downs. A high temperature, crashing blood pressure, the mother of all headaches - which went on for days, required a permanent ice pack on my head and wasn't even touched by the strongest painkillers - and some unusual blood test results have all led to various tests and panics. But I think I'm finally starting to make progress, even if it's super slow.  Eating is the biggest problem at the moment. Having been on liquids for nearly 4 months, my body, funnily enough, doesn't seem to keen to pick up where it left off before. I'm still dreaming of steak and chips or a huge pizza and think it will continue to be a dream for some time to come...  I've lost so much weight (2 stone), my clothes are hanging off me (people are calling me 'frail' which is never good) and have zero appetite. I'm eating like a little sparrow as I just can't tolerate anything bigger than a tiny portion.. not like me AT ALL.

I'm being bombarded with images of Christmas dinners, puddings and drinks which are everywhere at the moment... but it's so far removed from where I'm at right now I can't even contemplate it. I'm actually wondering if I'll ever eat normally again. I just hope it's because it's early days and it will take time. Fingers crossed.

Courier Newspaper Group Unsung Hero 
On the upside, just before I went into hospital I was totally thrilled to win the Courier Newspaper Group 'Unsung Hero' award for my running group and also as Race Director of the Tunbridge Wells Half Marathon. I've also been awarded the 'Group Leader of the Year 2012, South East' by Run England for my group.. a huge honour and I'm massively proud of both achievements. It is a real positive to dwell on as I recover and couldn't have come at a better time.

Sarah's Runners continues in my absence thanks to a team of fantastic support coaches and I can't wait to get back to them. I think it's going to be a few weeks before I can manage a run if today's 'slow shuffle' is anything to go by.. I walked 2 miles today and it finished me off! Although I'm only 16 days out of surgery... so I guess that's not bad progress. The view of Bewl Water and the stunning autumnal day lifted my spirits though and I feel like I might just be turning a corner... all I need to do now is learn how to eat again...

Beautiful Bewl Water

Monday, 22 October 2012

Surgery next week :-(

Ugh! there is no other word for it. Major setback.

This blog was always meant to be a positive record of my journey back to health, fitness and hopefully competitive sport. To provide others, who might be going through the same thing, with some hope and encouragement.

It was never intended to be a boring account of my ongoing health issues. But then I never thought I'd face further complications and more surgery :-(

My cry of 'When I'm better.. I'll be able to do XYZ' (was I really thinking I'd be able to run the London Marathon or cycle from London to Paris this year?) is getting a bit tired and I'm even beginning to question it myself. I got as far as a 10km, a sprint triathlon and the longest bike ride I managed was 40 miles..

This has been going on for two and a half years, on and off, and frankly I'm beginning to wonder if I'll ever be 'back to normal'. To be fair though, we don't really know why this stoma has gone 'wrong'.. and the surgeon won't know until he goes in. Most people with a stoma don't have these complications.

Mmmm... Lunch! again...
So.. One week today (29th October) I'll be back in the Operating Theatre having a major abdominal surgery. New surgeon, different hospital (Princess Grace in London - which I have to add is really rather nice!), my FIFTH operation. It's taken a while to get to this stage as I've had a number of tests and consultations with various Professors and surgeons. It seems I'm rather 'complicated'.

For the last 3 months I've been existing on liquids, boiled sweets, sugary tea and soups. I literally can't eat solid food. Every time I do I get a partial obstruction in my small bowel. My stoma has basically become narrowed to the size of a 'pinhead' with a further section of 15cm of kinks and twists behind it. No wonder I can't eat! I've lost a total of 20lbs in weight and to say that things have been a 'struggle' would be somewhat of an understatement.  

Basic things like cooking a meal for my family and then disappearing with a Ensure prescription milkshake, whilst they all eat is frankly grim. Work, training and coaching has taken a hit and it's as much as I can do to take my group for a wobbly 2 mile run and then collapse when I get home. My own 'exercise' regime has reduced to a slow shuffle with the dog. Only last week I walked 6 miles (a little bit too far if I'm honest! but we were chatting) with a friend and was so exhausted I could barely speak a coherent sentence at the end of it.

I've been turning down work for weeks knowing that this is coming and frankly I haven't got the energy to do much at all. Putting on my public 'game face' is something I've become scarily adept at. Everyone keeps telling me how 'well' I look. Nice of them to say so, but appearances can be very deceptive. No-one can see the internal struggle.

I'm simply hanging on by a thread and surgery can't come fast enough. 

This new (and frankly amazing) surgeon has some interesting plans though. He's not happy to just 'fix' the stoma. He's being incredibly thorough and wants to work out why things didn't work before.. and more to the point try to fix things, reconnect me and get rid of the bag altogether. And just as I'd accepted I'd have a stoma for life... Errr?!?! 

He won't really know until he gets me in the operating theatre, but the plan is to do a full top to bottom incision which will allow him a better view than with the laparoscopic surgery I've had so far. Without going into too much detail, then there are a number of options and I have to put myself in his hands and trust him to make the right decision whilst I'm out cold. I may come out with a fixed stoma, a temporary stoma or a full reconnection and no bag at all. And that could just be the start of it. If I have another temporary stoma, I will need a 6th operation to reverse it in a few months time. Try getting your head around all of that!

So I'm in a strange place at the moment. A combination of being absolutely petrified, overwhelmed, excited (at the thought of being able to eat again) and relieved that I'm in such good hands. 

I'm so lucky that I've got such an amazing family, hubby and group of friends who have been such a source of support and love throughout this whole ordeal... and continue to be so even though it's utterly, utterly boring. Most people would have 'unfriended' me months ago! I couldn't get through it without them and I know that their support will get me through this next stage. My running group in particular is just wonderful, it's what I live for really and I'm going to miss them so much whilst I'm away. Luckily I have some super coaches who can keep it going whilst I'm gone.

So wish me luck.. and see you on the other side. This one could well finish me off for a while. With a bit of luck I might be able to eat by Christmas :-)

Tuesday, 21 August 2012

Tomato soup

I haven't blogged for a while (a month to be precise) as quite frankly I'm totally and utterly bored of talking about and dealing with my health and my stupid stomach. I'm bored of feeling sick, bored of doctors, hospitals, not being able to train or ride my lovely new bike, bored of not being able to eat and mostly I'm bored of putting my entire life on hold.

My family is bored of it, my friends are bored of it and when anyone asks 'How are you?' It's a toss up between boring them to tears with the truth and watch them glaze over (and I honestly don't blame them), or just replying 'yeah, you know, okay thanks' and swiftly move the conversation on. My dad died of heart failure back in 2005 and in his latter years he really suffered. I used to ask him 'How are you today Dad?' and he'd snap back 'I'm fine.. why are you bloody asking me that again?'.. at the time I used to get upset, but I totally get it now. He just wanted to be fine even though he wasn't.

Reading back on my last few posts is really interesting (see I knew this blog would come in handy one day) as it's easy to forget quite how long things have been going on. Last week I had a really rough patch with an obstruction and got admitted to the local hospital for observation and CT scan (my 6th) and just a few days prior to that had a consultation with my surgeon. Both surgeons who examined me felt that my stoma (the bit of bowel which sticks out of my stomach) had become narrowed or kinked in some way and this would probably require.. guess what!?.. more surgery.  

They could make this diagnosis because of a technical and scientific examination - readers of a sensitive nature should skip this bit - where they both got me to take the bag off and stuck their finger in my stoma. Neither of them could get their finger in properly, so the problem probably lies with a narrowing of the stoma where output basically can't get out. So every time I try to eat solid food, I get some sort of partial obstruction. The answer in the short term, or until it can be surgically fixed, is to stick to liquids.

It isn't meant to be like this. I was meant to be better by now. Back to running marathons, training for triathlons and taking my kids out to fun places and more to the point, having the energy to do it all. My stoma wasn't going to stop me. Well it seems that it is.

My surgeon is conveniently on holiday at the moment, so I can do nothing but wait for him to come back, fit me into his manic schedule full of other far more ill people, wave his magic wand, get his scalpel out and fix me... hopefully before I turn into a crazy woman or jump off Beachy Head. In the mean time, I'm enjoying a diet of sports drink, jelly, yoghurt, For Goodness Shakes recovery shakes and heinz tomato soup all washed down with sachets of dioralyte. Yum.  How anyone does those 'liquid diets' for weight loss though is beyond me.. I'm wrecked and in the rare moments when I feel hungry, would give anything for a the texture of a crunchy salad or apple.
Me and my boys with 'Savannah' the baby African Eagle Owl

I'm managing to slowly potter about though, even though I'm feeling pretty rubbish most of the time. Like many knackered mothers, I have this innate ability to slap on my 'game face' when needed and carry on like everything is okay (remember Emma Thompson in 'Love Actually'?) and I managed to find the energy to take my son out for his 13th Birthday last weekend. We had an awesome day flying some birds of prey and then went out for ribs and fries afterwards - well everyone else did, I had a bowl of tomato soup.

Tuesday, 10 July 2012

Happy 1st Birthday Mr Stoma

A year has passed since I had my ileostomy surgery. Tomorrow is the official 1st birthday of Mr Stoma.

It's also been a roller coaster month since I last updated this blog. Since then I've had..

A calf tear :-(
A partial small bowel blockage :-(
Acceptance that there's an ongoing problem with my stomach :-(
A 40th birthday :-)
A new 10km (post surgery) best of 51.17 :-)

Just after Cranbrook Triathlon, I developed a small tear in my calf during a coaching session which set me back again. No biggie really, just frustrating and meant a couple of weeks of no running, physio and more foam rolling (sigh). So I didn't do Bexhill Triathlon - and didn't get to meet Graham Norton either. In the end it turned out for the best, as that very same day was the beginning of a week of being a bit poorly.

Without going into too much detail, on the Sunday morning I realised I had very little output from my stoma and was feeling a bit sick. This isn't a great situation as it can mean an obstruction, which at worst can be life threatening. I think mine was a partial blockage and wasn't an emergency, but I still felt really poorly - nauseous, wiped out, bloated and couldn't really eat anything. I resorted to liquids, sports drinks and meal replacement shakes but it was a good 6 days before I could eat much solid food and I felt awful for about a week. I was close to taking myself off to A&E on a couple of occasions and felt pretty desperate. It was a scary patch and I think the dawning of a realisation that perhaps things aren't totally 100% with my stomach. This wasn't an isolated blip either.. if I'm honest, things have been tricky for a while and I've been having to eliminate more and more foods from my diet. Not a major problem and for the most part it's manageable, but it just feels a bit like it was before I had the last surgery.. and that is just a bit scary.

My consultant seems to think I maybe have adhesions (which causes a kinked hosepipe effect), narrowed stoma or an issue with the motility of the small intestine (slightly more of a problem), but unless it gets much worse, prolonged or acute, there's nothing really to be done for the moment. Especially since things are better than they were. So for now I'm trying to manage things with a low residue diet (think low fibre, white processed things, easily digestible foods and very little greenery) and lots of liquids and hoping it'll go away... The thought of it being this for the rest of my days isn't a happy one. Interestingly though, I'm not struggling with weight loss.. I'm still able to get adequate calorie intake through meal replacement and sports drinks.. and thankfully can still eat chocolate and cake :-)

Of course it could be worse, and I'm still much better than I was before I had the surgery, but it's not as good as it could be and isn't normal 'ileostomy' function. I can't eat any meat, anything with fibre, fruit, vegetables, salad and can't tolerate a sip of wine without feeling really ill. It makes meals and going out for dinner challenging and frustrating. Until you have an issue with food, you don't realise how much our lives revolve around meals and alcohol for celebrations and social gatherings. It made my 40th birthday celebrations somewhat quiet, although everyone is very understanding and no-one expects me to drink myself into oblivion and party the night away.. thank God! give me a cup of tea, piece of cake and a nice long dog walk with my family and I'm happy.

Team 'Ostomy Lifestyle' on the start - bin bag chic
British 10km
Anyway, none of this has helped my training and I'm coming to the conclusion it's just a case of do what I can when I feel like it.. which hasn't been very much over the last few weeks. I did manage to drag myself around the British 10km on Sunday though in aid of my charity 'Ostomy Lifestyle'. A massive event with 25,000 people around the streets of London. On the start I wondered whether I'd actually finish the damn thing and was on the lookout for the First Aid and ambulance stations.. not my normal thoughts on the start of a 10km. Anyway, I wouldn't go as far to say I enjoyed it, but it was a good atmosphere and I ran 51.17 (a new post bag PB) and got to spend time with some great friends as we travelled and ran together. I was also proud to support the charity and raised a few pennies for Ostomy Lifestyle which was great... and I didn't end up in the Red Cross tent. Always a bonus. I felt the lack of training, proper nutrition and preparation though and it really was hard.. much harder than a 10km should be. Right now my legs feel like they've run a marathon.

So anyway.. as always, too much to cram into a short blog. I really need to update more often. Things aren't perfect, but could be worse and I'm managing to get by. Whether or not I'll be able to think about an Autumn Marathon or Ironman next year is another matter... At times it would be easier just to spend a bit more time on the sofa.. actually that sounds rather nice :-)

Thursday, 7 June 2012

Cranbrook Comeback!

I'd always said when I did a triathlon again I'd feel back to 'normal'. That was my benchmark. So Sunday 3rd June and Cranbrook Sprint Triathlon was always going to be a major turning point and an indication of my recovery and ultimately my adaptation to life with the 'bag'.
The date of the race represented almost 2 years to the date since I first took ill, and almost a year to the day since I had my permanent stoma so it was fairly poignant.
The last year hasn't been easy though. I foolishly thought I'd have my final surgery (July 2011) and be able to spring back into training and racing - I even thought I'd be able to do the London Marathon back in April! How wrong was I!? It's taken months of physio, rehab and patience, taking 1 step forwards and 2 steps back and has been hugely frustrating.  Each one of the operations and subsequent periods of recovery has knocked me down lower and lower and destroyed my fitness, muscle mass and mental strength.
Over the last couple of weeks however, things have started to come together a bit more and whilst I'm a very long way from being fit, I felt that I might just manage to have a go at the race and at least complete it.
Lying in bed on race morning at 5.30am listening to the rain lashing the window however, and doing a triathlon was actually the last thing I wanted to do. What was I thinking??! could someone remind me why I was doing this? Rolling over and going back to sleep would have been the sensible option.
I'd packed my kit bag the night before and cleaned 2 inches of dust off my race bike (literally!). I laughed as when I cleaned out my old bag, I found mouldy swimming caps and energy gels nearly 2 years out of date! It had been a long time... and I was pretty nervous. Would the bag stay put? would I fall off my bike? how would I manage the gels and sports drinks with my new fragile stomach? Would the organisers let me compete as a novice again? I certainly felt like one.
Getting to the race though and I felt myself checking out the 'competition' and their bikes! ha! old habits die hard. I gave myself a mental talking to.. 'you're not fit, you haven't raced or trained properly for 2 years and you have had 4 operations and have an ileostomy for goodness sake! don't put any pressure on yourself! don't be stupid.. just finishing this thing will be enough.' But the other bit of my brain was saying 'but it's not an excuse? I just want to see how well I can do? and I want to RACE'! It was pretty confusing.. so all I could do was get on with it and see what happened.
I definitely didn't feel slick through transitions and I was much slower across all 3 disciplines, but considering everything that I've been through and how unfit I feel I am, I was actually really pleased with how it went.  Out on the bike things got wobbly for a little while when I realised I'd possibly pushed it a bit too hard (trying - rather foolishly - to chase down the eventual 2nd place lady!), but I slowed down, got my heartrate back down and recovered. The run is usually my strength, but  I wasn't able to push it as much as I'd like - mainly due to the fact I haven't really done much running training :-) and it was all off-road through the woods and very muddy. But I finished strongly in 1:24 and felt like I was in control most of the way round. The race itself was lovely and despite the freezing cold conditions and drizzle, was well organised and a nice course.
Without wanting to focus on finish time or position - after all the 'goal' was just to get round :-) - I was thrilled when my husband pointed out I had actually come 6th lady overall and 2nd in my age group. It wasn't a huge race to be fair, but I was still pleased.. and it sounds good anyway :-)  I was really touched by his post on Facebook later that day and such lovely supportive comments from my amazing friends and people who've been by my side throughout the last 2 years. Thank you all from the bottom of my heart .. you know who you are.
It was just so awesome being back in the sport, able to compete and feel like I was 'normal' again. It was a crucial turning point and I can't wait to do my next one.. which is Bexhill Lions Triathlon in 2 weeks time. This time it's a 750m sea swim which will involve the added complication of a wetsuit  ... but most exciting (and probably my main reason for doing it) is that Graham Norton (who I love!) is handing out the medals! bring it on!
Now.. how about that Ironman!?

Friday, 18 May 2012

Ok.. it's getting boring now!

This blog is horribly overdue.. to the point that a Facebook friend even prompted me for an update the other day. I guess that means people are at least reading it and following my progress. Since I started writing it, it's had almost 5,500 hits.. quite scary that number of people are reading about me, my ramblings and my bowels :-)  Joking aside, I really hope that in some way it helps to either support, educate or give hope to those reading it.. please let me know what you think.

So that amazing trip to St Lucia feels like it was a million years ago and I'm ready for another holiday already! Life is pretty complicated at the moment with ongoing family/school stuff.. and it's hard just staying on top of it. Hence the delay with this blog.. Thank goodness my stomach is better, as if it was 12 months ago, I wouldn't be able to cope with the stress of my current situation with being so ill. 

This time last year, I remember being a very miserable and sick person and lurching from day to day, in constant pain, many sleepless nights and surviving on white processed carbs and liquid meal replacements.

Anyway, 12 months later, I have an ileostomy and things are much better. For a start I can eat and work and am busy preparing for my first triathlon (in 2 years) on 3rd June. It's only a little sprint one locally where I have to do 400m swim, 20km bike and 5km run.

I say 'preparing' however, in the loosest way.  My training is a bit hit and miss if I'm honest, and the inconsistency of it all and the ongoing niggles are starting to get a bit boring.  There's no doubt I'm making progress, I'm definitely feeling fitter and stronger at times, but goodness it's going to be a long road to full recovery. When people ask me how I'm doing.. I just roll my eyes now. I don't want to bore them with the answer!

My knee is better though.. it didn't turn out to be a meniscus tear and thankfully I've escaped the surgeon's scalpel. Although bizzarely he was still pretty keen to have a go anyway! Physiotherapy is working for sure, but the whole problem seems to be a major biomechanical imbalance on my right side (where the ileostomy is) from my knee all the way up through my quad, adductor, glute, hip and up to my side above my ribs.  The pain, inflammation and tightness shifts around depending on what I've been doing!  All caused, no doubt, by the 4 surgeries, changes in posture (I even sit wonkily) etc etc blah blah blah. I seem to know of lots of other people with ileostomies that don't have these problems and I don't know why my body isn't playing ball.. but it just shows how we're all so different.

My physio reckons it will take 2 years (!) to fully recover.. although she keeps assuring me that I will eventually. 

So until 'eventually' comes.. I'm doing a mix of bits of swimming, cycling and running as well as gym work and stretching/core stability stuff at home.. there isn't really a plan! Just trying to stay positive and work out scientifically which activity is making things better or worse. Every day there seems to be a different answer.

There are lots of positives though.. and here are a few:

1. Swimming has always been my weakness and I haven't been in the pool properly since all this began in June 2010. Over the last month I've been going more regularly and gradually built it up - major jelly arms to begin with. Historically my best time for 400m was about 7:20.. so for a laugh I timed myself over 400m to see how bad things were, and totally shocked myself by swimming 8:00 dead. Just shows swim training is highly overrated! ha.

2. Loving my cycling and have been going out with my friend Steve, who has been amazingly supportive. We hit the longest ride of 42 miles so far which was just amazing! I'm also starting to work out which sports drinks, bars and gels etc work best and always remember to take a dose of immodium before going for a long ride which makes sure the bag stays empty.

3. I've started running with the Harriers again on a Wednesday night and even though I'm just doing 5 miles, it feels fantastic just to be part of the gang again.

None of this is easy though. There are times when it would be easier to just give up on it all and my hopes of getting fit again, competing and doing a marathon or an Ironman. Sometimes I just feel tired of battling on with such little progression. But a quick slap and I'm back in a better frame of mind and have to keep going.. I've never been a quitter.

So this quote sums things up nicely... 'Perseverance is the hard work you do after you get tired of doing the hard work you already did'  Newt Gingrich

Anyway.. if I'm still in one piece on 3rd June, I'll have a waddle around that triathlon and report back! wish me luck.... 

Tuesday, 10 April 2012

Bikinis, water skiing and turning a corner!

Just back from an amazing week in St Lucia. My first beach/swimsuit/hot holiday with the ileostomy. Before we went I was feeling completely frazzled and so it was just what I needed.. proper relaxation which didn't involve running, cycling or climbing mountains!

All that fretting beforehand was for nothing. I didn't need to worry about the bag blowing up on the plane (my boys weren't keen to sit next to me just in case!) or being frisked at the airport and asked to remove the bag. Nor did I end up in hospital with food poisoning or a blockage. In fact my wonderful little stoma worked like a dream and I was able to have a fantastic time and almost forget all about it. I even went water skiing!! Ironically I was more worried about twisting my knee rather than what might happen to the bag. I haven't been waterskiing for 10 years so it was a little nerve wracking. But there's part of me wants to prove to myself that having an ileostomy won't stop me doing anything, and that includes water skiing! In some ways I think it will end up making me more determined. It was great fun and just made me feel so alive and 'normal'.

I also wore a bikini, ate pretty much what I wanted and I can guarantee that 99% of people on the beach didn't have a clue. The one person I did mention it to, couldn't believe I had a bag and was staring at my stomach wondering where it was. I did have to empty almost every 45 minutes to keep it flat and had a 'cover up' on hand in case it decided to bulge more than normal. It also didn't like the salt water too much and as I was swimming a lot the sticky wafer was soon losing its stick, but other than that it honestly was no problem at all.

When I had the surgery last July, I did ask my lovely surgeon to position the stoma as low as possible so I might be able to wear a bikini again one day. And I'm super grateful to him for that :-) I promised I'd post a photo and here it is..  for no other reason than to give hope to other people facing surgery or who have an ileostomy already. If you look super closely you can just see the top of the bag poking over the top of the waistband - but probably best not to look too closely! I'm not in the shape I used to be :-(

That is starting to change though as my diet slowly gets back on track and doesn't revolve around white carbohydrates anymore. I'm able to tolerate more protein and vegetables and the horrible bloating and weight gain around my middle is slowly going. My leg continues to improve and my knee is much better. So much so that I'm back running a bit again and up to 40 minutes with no pain at all! Yippee! I'm doing lots of rehab though, hopping, squatting and foam rolling like a woman possessed.  Even though I haven't run for about 6 weeks I haven't lost any fitness thanks to the tough bike rides I've been doing with Steve, so my run on Friday was 3 minutes faster than the last time I did it, on the same average heartrate. Yippee yippee yippee!

I'm doing the British 10km on 8th July in London in aid of Ostomy Lifestyle - this fantastic charity are all about helping people with an ostomy live a positive life. Having a stoma doesn't mean your life is over. It's the perfect charity for me to be involved with as that's exactly my philosophy and I hope I can do more with them in the future.

The race will be almost one year to the day since I had surgery to form the stoma, so will be a great way to celebrate being healthy, well and able to run again and I'm really excited about it. Here's my fundraising page if you want to help me raise a few pennies.

Before that though, I'll be doing Cranbrook Sprint Triathlon on 3rd June. It will be almost 2 years to the day when I first got rushed into hospital with stomach pain. Its hard to think about how much has changed since then. The last triathlon I did was Weymouth Half Ironman on 6th June 2010. This one is just a short sprint so 400m swim, 24km bike and 5km run and a nice small quiet one where I won't know anyone (apart from Steve who's doing it with me). I won't be breaking any records or picking up any trophies, but I can't wait and now my leg is improving feel really positive to be able to train consistently and it's lovely to finally see a tiny bit of progress :-)

The holiday has been a fantastic turning point for me and I've come home loads more positive and feeling stronger about my body, coping with the ileostomy and what the future holds.

Saturday, 17 March 2012

'Fall seven times, stand up eight'. Japanese Proverb

I haven't had a second to breathe over the last few weeks, let alone write this blog.  So apologies.. there's a lot to catch up on.

After my mini-meltdown in my last blog post, lovely hubby took the 'unsubtle' hint and decided that a holiday was in order. A proper lie down and flop holiday, not one involving mountain bikes, climbing mountains or running events which is more normal for us! So next week we're off to St Lucia and I simply can't wait.  My plan is to cover myself in sun cream, open a book and not move for 7 days. 

The thought of a beach holiday however did send me into a bit of a tailspin. This will be the first time we've had a 'hot' holiday since I had my ileostomy, and as any woman might appreciate, the 'swimsuit' and 'bag' issue was the first thing on my mind. My string bikinis and hipster shorts have been ceremoniously dumped in the bin (with a sob) and I hit the shops for a flattering swimsuit that would hide the bag and give me a bit of beach confidence. Hmm.. not an easy task. For any fellow ileostomy ladies out there who might be vaguely interested, I settled on a couple of Sea Folly one piece suits with a double layer and some gathers over the front. I even managed to find a bikini! It's got a cute little skirt and hides the bag brilliantly (imagine the sort of thing a 2 year old might wear!). As my stoma is quite low on my stomach, I can just about get away with it if I fold the top of the bag over. It's not a fantastic look, but it'll do. If I get brave I'll post some photos when I get back..

Vanity aside, more serious issues around travel insurance and potential health problems are also on my mind. I had to upgrade my travel insurance and disclose the ileostomy as a medical condition which isn't covered under the normal policy. This is the first time we've been abroad since my surgery, and the thought of needing any medical treatment whilst on holiday is a horrible one for anyone, but having an ileostomy, increases the risk of something going haywire. Dehydration, food blockages and complications with the stoma are all real - although unlikely - issues which could occur. It had better behave itself as I have no intention of ending up in a St Lucian hospital! I've also heard horror stories of people being body searched at the airport and asked to remove their bag. GULP! although to be honest, it would be more traumatic for the person asking to see what was 'in the bag'.. but I have a neat little card explaining  why I have the bag, what it does and why I can't remove it! Let them try..

In my last post I was having a big old moan about my knee which was causing a lot of pain, stopping me running and there was suspicion it was a meniscus tear. Well.. BIG update. The MRI scan didn't show an obvious meniscus tear so the Surgeon sent me off for 6 weeks of intense physiotherapy and then if no difference he'll do an arthroscopy. The physio got her hands on me, taped the knee and set me an insane amount of rehab to do at home. Let me tell you.. an arthroscopy would have been the easy option. If you don't know what a foam roller is, let me enlighten you. It's like a giant rolling pin made of solid foam - a tool of torture. You roll your leg up and down and release all the tension and lumps in the muscle and tissue. It's agony. But it seems to be working as the knee is 60% improved. The taping on the knee has offset the pain elsewhere into my ITB and hip, which, whilst annoying, is good news. It means it's likely to be a biomechanical issue after all and caused by surgery and all the postural changes since, especially in my hip flexor and glute.  Which just means lots of hard work in the gym, on the roller and enduring pain on the physio's couch. Better than more surgery though and gets me a step closer to running again!

So without wanting to count my chickens, I'm hoping that it might be better by 8th July, so I can do the British 10km on behalf of Ostomy Lifestyle. A fantastic stoma charity which I want to get involved in. They're all about supporting people who have stomas and encouraging them to live life to the full. A couple of my running group have already signed up and it would be great to be there with them. A reasonable target I think?  

In the meantime, I'm keeping my fitness ticking over on the bike and last weekend hit the big 40 miles barrier! my longest ride since June 2010. Each ride I feel stronger and fitter. The hills get a little easier and I feel more confident with my bike handling skills and less fragile. I've been riding with my friend Steve, and together we're building the distance and it's great to have support and company. 

Anyway.. I'm now 8 months post surgery. I'm not as fit as I'd like or back where I wanted to be. I foolishly hoped I'd be able to run the marathon in April and even an ultra in June. Ha! Well I'm learning (and accepting) that it's going to take much longer than I ever thought. The physio is fantastic and very supportive but keeps saying 'don't underestimate what you've been through' and keeps telling me off for pushing too hard. My version of taking it easy clearly isn't the same as hers! I am however making progress. It's a bumpy old road, but I'm slowly getting there. Wherever 'there' might turn out to be is anyone's guess.
This lovely little Japanese proverb sums it up perfectly.. 'Fall seven times, stand up eight'.  

Thursday, 23 February 2012

I need Gok Wan..

Things are crazy hectic with organising the upcoming Tunbridge Wells Half Marathon on Sunday..  lots of work, a new (and naughty) dog and school/special needs issues with my eldest son. I have a stinky cold at the moment too, I can't run and it's likely my knee will need surgery.  Put that all together on top of the last 2 years and it's no wonder I'm feeling wrecked. BLEUGH! am I allowed to grumble?? 

I'm really in need of some TLC.. or maybe just a holiday.  A friend of mine (who suffers from cardiomyopathy and doesn't run at all anymore) said to me last night that he felt like he was 100 years old and I know exactly what he means. Being surrounded by fit runners all the time doesn't help either and I'm seriously thinking of finding a knitting or jigsaw club instead.. ;-) 

A friend said to me yesterday that I looked 'rough' (it was meant in a kind sympathetic way).. and believe me.. I feel it too.  What I need is a Gok Wan makeover! My body image and confidence isn't at it's best (that would be a major understatement) and I find myself living in 'sweatpants' and comfy clothes most of the time.  This is partly to 'hide' the bag and for comfort reasons too.. tight jeans and a stoma don't go terribly well together - or at least not all the time.  The biggest problem I have though, is the fact I've gained weight, am really not athletic looking any more and just feel really untoned and unfit. I'm torn between beating myself up about it 'having a stoma and surgery is no excuse' and feeling just a little bit sorry for myself. 

I know I've been through a lot, but other people have much worse and I can't sit around blaming the surgery or my situation. But it's hard to stay positive and strong all of the time.. and right now I'd quite like to hide away under my duvet or a giant sack. 

I've got an MRI scan on Saturday for my knee, but the surgeon is pretty sure it's a torn meniscus which is going to need an arthroscopy. It's not a big deal in terms of surgical procedures, and I should probably just get on with it, but it'll mean another 3-4 weeks of recovery and not being able to run at all. The thought of the anaesthetic and another trip to the operating theatre frankly brings me out in a cold sweat.  UGH!

Without it though I won't be able to run at all, and in order to get fit and be where I want to be, it's got to be done and I just need to be brave. So I'll see what the surgeon has to say on Saturday and what the MRI shows.

Anyway.. I can't sit here moaning all day... I think I need a good kick up the backside... and if anyone has got Gok Wan's number then let me know! 

Tuesday, 7 February 2012

The running coach who can't run..

Right.. well there appears to be another 'blip' on my road to recovery... And this time it's nothing to do with my ileostomy or my stupid dysfunctional bowel. 

My right knee has been getting worse and despite doing the correct strengthening exercises and having treatment etc the pain is increasing and I can hardly run at all. So I sought out a second opinion from a physio and she seems convinced it's a tear in the meniscus - not just a muscular tracking problem which we first thought.

This isn't good news. It means a referral to a surgeon, MRI and possible arthroscopy to fix the tear.. followed by 4-6 weeks of no running at all. Physio and strength work just won't sort it. To say it's frustrating after everything else I've been through would be the understatement of the century.  

I've given up running altogether now and the sessions where I coach my group Sarah's Runners I can just about manage a 2 mile hobble with the beginners.. but it's painful and I would reprimand anyone I coach who tried to run with that much knee pain.  So much for my dreams of doing the marathon this year! 

So I am officially the 'running coach who can't run'! ha what irony. 

Me (in the middle) with my lovely runners
On the upside though, we held a charity ball on Saturday night for Sarah's Runners which was a fantastic evening. We raised over £700 for Hospice in the Weald where my dad died a few years ago and everyone had an amazing time. When I started the group 8 years ago it was with a gang of 4 mums from the local village who had asked me to teach them to run. Now the group has grown beyond anything I could ever have imagined where we see over 100 runners each week. I'm really proud of the group and of every single person who comes along, usually petrified on their first session but who then learns what they're capable of and how running can transform their lives. They're a great bunch and I get a huge amount of pleasure from coaching and encouraging them. 

I'll be honest though.. it's not always easy and I have pangs of major envy when friends and others I coach proudly tell me about their fantastic achievements, races and distances. I'm thrilled for them.. but just feel a moment of sadness for myself.  

So yet again I'm faced with another 'bend in the road'. I'd hoped that by now I'd be back running, back in shape and even gearing up for a marathon. Hmmm... 

No-one could have predicted this knee injury and it's nothing to do with the other surgeries. It's just bad luck and could well have been brewing for a while.. My resilience is certainly being tested to the limit though and it's a little set back I really don't need. 

The mention of surgery at first made me go a bit cold. I'm SO done with hospitals, anaesthetic, pain medications (and pain!), surgical procedures, recovery and rehab.. and to have to put myself through it again really DOES NOT appeal. But if I can't run, I can't coach and that is my life. It's who I am and what I do. Running isn't just a hobby. It defines me.

So now I just wait for an consultation appointment and see what is to be suggested. Cycling is still okay though, and as we have thick snow and ice outside, that must mean it's... turbo time!

Monday, 23 January 2012

What a difference a week makes..

I'm feeling so much more positive this week.. the 'grumpy old bag' from last week has been well and truly put in her place! In fact I can't believe I wrote that blog.. who was that negative person?? Not me, that's for sure.

But in a way, that's what's so important about writing this blog and recording all of my feelings and experiences.. the good stuff and the bad. It would be so wrong to dismiss my negative feelings and to only write about the good things. In a way writing about it helps get it out of my system and helps me focus on the positive. Life with an ileostomy isn't all roses, but it's really not as bad as anyone might imagine and I believe it's my responsibility through this blog to show both sides of the coin.

Anyway, I've shelved all ideas about running, about doing the marathon and about trying to build up my mileage.. and since having done that, I feel like a weight has been lifted.  It doesn't mean I'll never run again, but for the moment I need to figure out this hip and knee issue and it's not going to get better if I keep running in pain. I can however, still cycle and it doesn't seem to hurt my knee at all.. yippee! So yesterday I went out with my friend Steve and we did 33 miles all around the local lanes and villages. Glorious weather and great company and a fantastic sense of achievement. I was a seriously happy bunny when I got home and had that lovely 'tiredness' from a 2.5 hour bike ride. No knee or hip pain at all and in fact I actually think it helped strengthen and fire up the muscles.

One of the good things about triathlon has always been that if you have an injury of some sort and it prevents you from doing one of the three sports, you can generally still do at least one of the others. And that is what is important now.. not to be miserable about what I CAN'T do, but to be grateful for what I can do and flexible enough to work it into my schedule. Ok, so running might be off the agenda at the moment, but I still love cycling and swimming and that's more than I could do this time last year when I was feeling so ill. 

So instead of setting a unachieveable running goal that's going to make me miserable, it got me thinking about setting an exciting cycling goal that would provide some motivation and excitement. 

And I'm not one for an easy challenge, so the first thing that came to mind was the 325 mile London to Paris bike ride. Perfect ! don't you think? Of course it's not all in one go.. that would be a bit too much.. well this year anyway. 

You spread it out over 4 days. It would be achieveable yet challenging enough to be exciting. And even better it would co-incide with my 40th birthday and I could do it with my hubby. Right then.. better get ourselves organised and plan it. I've got that excited feeling in the bottom of my stomach, and as my life coach friend Tony will no doubt agree.. that must mean it's the right goal.

Monday, 16 January 2012

Grumpy old bag..

Apparently today (16th January) is the grumpiest day of the year and officially called 'Blue Monday'..  According to the news, it's to do with the build up of debt after Christmas, failed New Year resolutions and the 'back to work' blues now the euphoria of the festive break is a distant memory.

I can relate with that..  but my grumpiness is due to a realisation that this rehab process - and return to proper running - is going to be far more prolonged than I thought. I'm trying really hard to be positive, strong and motivated.. but if I'm honest it's not going well.

Everyone around me, people in my running group and even runners that I'm coaching are reporting in with tales of their wonderful mileage, great achievements and big success.. and whilst I'm thrilled for them all, deep down inside I'm feeling just a bit envious and glum.

I, perhaps naively, thought that 6 months after surgery I'd be somewhere close to being back to normal. Ha!  far from it.  It turns out that there are some major biomechanical imbalances developing between my right and left side. I discovered this last week after therapy and a training session in the gym on Friday and the difference in strength and flexibility is getting more and more pronounced. The right side - where the stoma is sited (right in the middle of my rectus abdominus) and where I had the previous stoma (leaving a 5 inch scar) - is significantly weaker than the left.. all through the hip, glute and quad. This is what's causing the constant discomfort in my hip and pain through my knee.  SIGH!  I probably shouldn't be running at all and need to spend lots of time in the gym rebuilding and on the therapists table having treatment and massage. This is always going to be a problem now apparently.. and I'll have to work on it forever. Rather like when you say to the midwife after giving birth 'when can I stop doing pelvic floor exercises'...  and she say's 'err never'. 

It's clearly not enough that I had to have 4 abdominal surgeries, spend a month in hospital, swap all my muscle tone for body fat, end up with a stomach that looks like the surface of the moon (with a bit of bowel sticking out of it), miss out on my Ironman that I'd trained so hard for and lose pretty much 18 months of my life to illness, surgery and recovery.  Huff.

My weight gain is another bug bear.. (and one I'm not entirely comfortable blogging about). I'm now about 12lbs heavier than I was before (sshh!).. I guess going from being an athlete to a sick couch potato would do that. And believe me, it's all fat! A fellow runner pointed that out last week at a club run 'Oh your body shape is TOTALLY different now isn't it'.. he says. A very helpful observation!!! Not.  But I don't feel ready to put any pressure on myself to worry about losing weight just yet. The motivation to have a flat bikini stomach has gone forever and the desire to lose a few pounds to get my 10km time down.. well that's not exactly a priority. So I'm hoping that one day soon I'll wake up and the desire to really work on the weight loss will be there.. for the moment it's done a runner.

The whole thing has been an interesting process though and taught me a lot (see I'm trying to find a positive here!) about myself and others.  Like I said in my last post, it's just going to take a long time and I need to be super patient and persevere. I know deep down that I'll get there eventually.. it's just uber frustrating. 

Ironically, the bag is actually the least of my concerns. All I want is to be able to run without a knackered knee, hip or leg. It's not much to ask is it?  I know things could have been much much worse. And in some ways I'm lucky to be here at all. But I want more from my life than that. I want to be able to compete in running and triathlon, to take part in crazy events, to feel fit and be able to run properly and freely and to just be me again.  In the meantime, I'm just going to have a moan. Thanks for listening. 

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."