Goodbye for now...

3 months have passed since my last surgery. Recovery has been up and down but generally steady and I'm certainly better than I was before. My diet is still very limited but better than it was 6 months ago when all I could manage was liquids. I still exist on soups, smoothies and low residue foods like pasta, rice, toast, cheese etc and I've reached the conclusion that this is as good as it's going to get. It's not fantastic, but it's manageable. As long as I feel healthy and can exercise, do my work and live a relatively normal life, I'll take it. I'm not bitter, angry or resentful about how things have turned out. It is what it is.

Another operation is on the cards at some point in the next 12 months, but I have my head firmly in the sand and really don't want to, nor do I have to, deal with it yet. I've had 5 surgeries over a period of 2.5 years and frankly I'm done with it for now! 

So for now I'm living my life, exercising, running my group, coaching and working again. I'm up to running 7 miles and working on building it up, getting fitter stronger and have some great events planned for the summer. It's not that I'm in denial.. far from it. I just want to live as normal a life as I can and honestly I'm just really bored of it all. I'm utterly bored of talking about it, of doctors, hospitals, surgery and feeling sick.

I have some really exciting work projects and want to focus on being a runner, coach and athlete again rather than a sick person. I want to be known as a runner/mum/athlete/coach/writer/fun happy person.. not a bag lady.

So on that note, I've decided to wrap this blog up for the time being. It's been a huge source of comfort to me over the last 2 years and writing about my journey has helped get me through it. Judging by the emails I've had from other people facing the same surgery or illness it's been a source of comfort to many others too, and I'm pleased it has helped even in just a small way. But it's time for me to move on. Continuing to write about it just isn't for me any more.

I have no idea what the future will hold, apart from it's very different than the one I imagined. All I'll say is this.. Never take anything for granted folks, especially when it comes to your health and fitness... no-one knows what's round the next corner. Enjoy every run and never complain. One day it might be taken from you.

So I'll say goodbye for now. Thank you for being there, for reading my ramblings and all your support. 

I'll leave you with this thought.... 

“Things turn out best for the people who make the best of the way things turn out.” John Wooden

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

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 :-)

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.

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 :-)

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!?

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....