I'll be honest. I'd never heard of an ileostomy before I had one - and I consider myself to be pretty knowledgeable about medical stuff. I'd heard of people having a 'bag' but hadn't really stopped to think how it worked or what it was. I also didn't know anyone who had one.
Now of course I know lots of people - both locally and virtually - and it's quite interesting how common it actually is. I even have a running friend who has an 11 year old daughter with one. I read a stat somewhere that around 150,000 people in the UK have either an ileostomy or a colostomy. Despite that however, it's not the normal topic of conversation at your average dinner party and still something people feel uncomfortable talking about. Mention the word bowels or poo and people start to squirm.
I was asked by a lovely well meaning friend the other day how I was getting on with my 'fake stomach'.. so on that basis, I thought I'd make this blog post a little more educational.
I have something called an ileostomy. It was required to 'bypass' my colon (large bowel) which had decided to stop working properly. Some people have an ileostomy when they have crohns, colitis or cancer. Mine was due to diverticulitis which I didn't know I had.
My small bowel (at the ileum - hence the name ileostomy) has been brought out through a hole in my stomach wall. The surgeon stitched the bowel to my skin to create an opening called a stoma. This photo shows what it looks like (this isn't MY actual stomach but a fairly nice looking stoma). By the way NEVER google 'Ileostomy images'... especially if you're about to have surgery for one!
All the waste from my digestive system comes out of my body through this little stoma (basically I don't poo normally). It outputs waste all the time and I suppose a bit like having diahorrea 24/7. I have to wear a bag over the stoma to contain the 'output' and then empty the bag a number of times a day. Apologies if that's a little too much information... but hey! we all eat and poo. Just now I do it slightly differently.
A colostomy (sometimes used as an overall term) is slightly different and is where the large bowel is used to create the stoma. It's usually on the left side of the body and lower down. A urostomy is where a stoma is made to empty the bladder to a bag on the outside. Basically someone who has one of these procedures is known as 'ostomist'.. although we prefer 'optimist'.. which is sort of the same thing :-)
Anyway.. that's about it really. Kind of amazing when you think about it. For the most part it works pretty well.. other times, it makes very inappropriate noises! occasionally the bag peels off and leaks and that's not much fun AT ALL (especially when you're out on a bike!). Other times I get very high output and feel a bit ill due to lack of electrolytes and sometimes the skin around the stoma can get sore which itches like crazy. But generally it does what it's meant to and I hardly notice it's there. Which suits me just fine :-) It's one of those things that sounds and looks pretty grim, but the reality is that it's nowhere near as bad as you think it's going to be.
My friend Helen at the Ostomy Lifestyle Charity has created this great little video to explain exactly how our digestive system works and what's involved in creating a stoma.
Living life to the full with an ileostomy. Having a stoma is a challenge to overcome, not a barrier or an excuse. Follow your dreams; life is too short.
Thursday, 17 October 2013
Wednesday, 25 September 2013
Jungfrau Marathon 2013.. the most perfect day
This blog post is a bit of a long one... but to write anything less would not do it justice. Grab a cup of tea and settle down for a read.
The Jungfrau Marathon is an event which has been on my 'bucket list' (I hate that phrase, but you know what I mean) all my life. Now it's over, I can safely say it was the most incredible event I've ever done and it exceeded every expectation.
I've run 9 marathons in my life and I don't think I've started any of them feeling 100% prepared or that I had done 'enough' training. I don't know a runner who does. But my preparation for the Jungfrau marathon was truly woeful.
Only 9 months ago I had my 5th major abdominal surgery and my third stoma. In the lead up to that surgery I'd been unable to eat solid food for 4 months due to adhesions and I'd lost 2 stone in weight. After the surgery, I was weak and frail and at my all time low. It took a while to get back on my feet and it's not been an easy road. Muscle loss had been extreme, postural and biomechanical changes have meant numerous running injuries and my stoma is still dysfunctional at times, meaning periods of having a liquid diet and feeling rather unwell.
That all said, the surgery has made a difference and I'm actually much better than I've been in 3 years. Nonetheless, the decision to enter the Jungfrau marathon last February - known as one of the toughest and most beautiful in the World - was an interesting one (some would say deluded), given where I've been with my health.
Of course it may have been more sensible to wait until 2014, but then I'm not that sensible. And anyway, life's just too short.
The race itself is interesting, in that you run the first 16 miles or so mostly on the road, then it becomes more of a climb/walk as you go up the mountain on trails and narrow paths.
It climbs 1500m in total (which, when you compare it to Ben Nevis at 1344m, puts it in perspective) starting at around 550m and finishing at 2100m at a famous landmark known as Kleine Scheidegg just below the peak of the Eiger. As you do.
On that basis my plan was never to follow a 'classic marathon' schedule, but to mix it up with long bike rides and strength work. I kept my longest run to 18 miles and tried to incorporate more walking, hiking and riding to get my legs stronger. And basically just kept my fingers crossed. Like all great plans, it was a bit hit and miss, to say the least. I'd had a few spells of my stomach not being great, which had meant missing training and wondering what on earth I was thinking. A ongoing hip niggle was just about manageable with hours of strength work, foam rolling and massage every week, but a calf tear with only 3 weeks to go nearly put paid to the whole thing.
So to say that I felt unprepared when we boarded the plane to Switzerland was the understatement of the year. I don't think I've ever felt less confident going into an event. I had no faith in my body or my training and really really didn't know how it would go. I'm not just saying that either like many runners do before a race 'Oh you know, I've been injured and don't feel great' then they run a PB. I really really didn't think I'd make it. Not only was I unprepared, but the event itself was up there as one of the biggest challenges I've taken on. What could possibly go wrong? or more to the point.. what could possibly go right?
Anyway.. Switzerland. We arrived. First stop was the expo (conveniently right next door to our hotel in Interlaken) on the Friday to collect our race numbers. They were showing a video of the race from previous years on big screens and everyone was milling around looking fit, excited and far more prepared than me. I was suddenly overcome with emotion and fear and burst into tears. 'I can't do it!' I sobbed to my husband. 'Look at that' pointing to the massive mountain 'what are we thinking?'. Fairly pathetic really, but given the physical and emotional roller coaster I've been on over the last 3 years, perhaps not that surprising.
'We're here now' he said encouragingly (or perhaps he was just deluded too) 'we've just got to give it a go and have fun, and see how far we can get'. But I wanted more than that. I wanted to finish it, I wanted to experience the most beautiful marathon on the planet and I wanted to tick that box, and share it with the man who's been by my side through thick and thin. No pressure then.
We reckoned, that the best outcome was we'd both finish and it would be an amazing experience. The worst outcome was that one of us (or both) would have to pull out, or worse still, I'd end up in hospital with dehydration (always a possibility). We didn't know how it would pan out, but it had to be somewhere between the two!
Race morning arrived and I felt a bit more calm (I'd done a 10 minute run the day before and my calf stayed in one piece - ha! you see I'm in perfect shape). We made our way to the start and got ourselves into the right pen. It was a stunning morning, bright blue sky and a great forecast for the day ahead.
I had decided to run with a camelbak so I could take my own electrolyte fluids (having an ileostomy I have greater hydration needs) and not just rely on the organisers, which turned out to be a great decision. It ended up being a really hot day and I drained 2 litres of sports drink as well as taking fluid and food from every feed station.
The gun went and we set off. A short trot around the town and then out into some of the stunning little villages around Interlaken. After about 10km I started to relax. Maybe I could do this after all? everything was working. Hubby was still in one piece. Wow. We might just do it. We were actually enjoying it too. The villages and Swiss chalets were stunning and the support was amazing, cow bells, shouts of 'hopp hopp' and bands playing all the way around the course. I was overcome with emotion. I was here, alive, taking part and so far still in one piece.
The route climbed a bit up to Lauterbraunnen - a valley beneath the mountain range of the Jungfrau, Monch and Eiger and the views started to become breathtaking. Cue, more tears from me. 16 miles in and so far so good. Then suddenly the route went uphill and everyone ground to a walk. Running was impossible, so it was hands on knees and a lot of huffing and puffing for the next 3 miles - around 500m ascent over 5km. This was the infamous climb up to Wengen (the beautiful car free town beneath the peak of the Jungfrau) and it lived up to expectations. My heart rate was higher than when running the previous 16 miles. The experience of running through Wengen is sealed in my memory forever - amazing support, stunning views, beautiful buildings and just a very special feel to the whole town. Definintely a place I'll be going back to.
After that the scenery became just more and more breathtaking, with glimpses of the Jungfrau as the route climbed up and up. More climbing with hands on knees as the route changed to more mountain trail and paths. There were parts where we could run a bit, but then it got steep again and back to walking. It was difficult not being in a rhythm and probably the hardest part of the race. Then at Wixi we turned the corner and were confronted by the most stunning view of the Eiger, Monch and Jungfrau range. It was utterly breathtaking. I texted back home to my mum and boys '20 miles done.. we're going to make it!'. For the first time I realised it was going to be possible. We'd got this far and nothing was going to stop me now. I felt elated.
The path then wound up through forest and out onto the mountain side, heading up to the peak of the Eiger with the Jungfrau on our right. Initially we thought we might be capable of running 5.5 hours, but that soon became irrelevant as we just stopped to take photos and just take in this 'once in a lifetime' experience. Finish time was the last thing on our minds and in fact I don't even think I looked at my watch. This was never about 'time' or performance. It was just about the experience and the achievement.
The path then turned into a single file of 'ants' crawling up the mountain. The atmosphere and camaraderie at this stage was just lovely. There was a group of Swiss horn players and a man playing bag pipes right there on the side of the mountain and lots of supporters who'd made a massive effort to get up here and cheer on their friends and loved ones. It put our efforts of getting to Tower Bridge for the London Marathon into perspective.
Running was completely impossible now and it was just a slog onwards and upwards, up the mountain. The markers were now every 250m which felt demoralising as it took so long to get to each one. But the end was in sight. The North Face of the Eiger was just up ahead and that meant the finish line was near. Some kind volunteers helped us all over a particularly technical bit of rock which was right on the edge of the mountain - which was just as well as I had serious jelly legs - then it was a nice flat downhill stretch to the finish line at Kleinne Scheidegg. More tears. In fact this time it was more like big sobs.
We crossed the line hand in hand having had one of the most magical and perfect experiences of our lives. Straight over the line and hubby heads to the beer tent for some 'rehydration' and I just sat down taking it all in and soaking up the enormity of what I'd just achieved.
Not in terms of time (it was 5:51 in the end, not that I really cared - although its estimated it takes around 2 hours longer than a normal road marathon) or even the distance, but in terms of where I've been with my health over the last 3 years. At times thinking I might never get back to running (just re-read some of this blog) and wondering that I might not make it at all. What made it so perfect was the combination of all of that plus the lovely weather, amazing views, stunning beautiful Switzerland (which I've now fallen in love with) and sharing it all with my hubby. It could not have been a more perfect day and I'd go as far to say it's my greatest achievement.
Friends have asked if I'd do it again, but the answer is no. It's sealed in my memory as one of the best days of my life and I never want to change that. It couldn't have been better and I'd never top it.
Talking of things that might top it however.... lets put it like this, I'm working on a list :-) Comrades anyone?
The Jungfrau Marathon is an event which has been on my 'bucket list' (I hate that phrase, but you know what I mean) all my life. Now it's over, I can safely say it was the most incredible event I've ever done and it exceeded every expectation.
I've run 9 marathons in my life and I don't think I've started any of them feeling 100% prepared or that I had done 'enough' training. I don't know a runner who does. But my preparation for the Jungfrau marathon was truly woeful.
Only 9 months ago I had my 5th major abdominal surgery and my third stoma. In the lead up to that surgery I'd been unable to eat solid food for 4 months due to adhesions and I'd lost 2 stone in weight. After the surgery, I was weak and frail and at my all time low. It took a while to get back on my feet and it's not been an easy road. Muscle loss had been extreme, postural and biomechanical changes have meant numerous running injuries and my stoma is still dysfunctional at times, meaning periods of having a liquid diet and feeling rather unwell.
That all said, the surgery has made a difference and I'm actually much better than I've been in 3 years. Nonetheless, the decision to enter the Jungfrau marathon last February - known as one of the toughest and most beautiful in the World - was an interesting one (some would say deluded), given where I've been with my health.
Of course it may have been more sensible to wait until 2014, but then I'm not that sensible. And anyway, life's just too short.
The race itself is interesting, in that you run the first 16 miles or so mostly on the road, then it becomes more of a climb/walk as you go up the mountain on trails and narrow paths.
It climbs 1500m in total (which, when you compare it to Ben Nevis at 1344m, puts it in perspective) starting at around 550m and finishing at 2100m at a famous landmark known as Kleine Scheidegg just below the peak of the Eiger. As you do.
On that basis my plan was never to follow a 'classic marathon' schedule, but to mix it up with long bike rides and strength work. I kept my longest run to 18 miles and tried to incorporate more walking, hiking and riding to get my legs stronger. And basically just kept my fingers crossed. Like all great plans, it was a bit hit and miss, to say the least. I'd had a few spells of my stomach not being great, which had meant missing training and wondering what on earth I was thinking. A ongoing hip niggle was just about manageable with hours of strength work, foam rolling and massage every week, but a calf tear with only 3 weeks to go nearly put paid to the whole thing.
So to say that I felt unprepared when we boarded the plane to Switzerland was the understatement of the year. I don't think I've ever felt less confident going into an event. I had no faith in my body or my training and really really didn't know how it would go. I'm not just saying that either like many runners do before a race 'Oh you know, I've been injured and don't feel great' then they run a PB. I really really didn't think I'd make it. Not only was I unprepared, but the event itself was up there as one of the biggest challenges I've taken on. What could possibly go wrong? or more to the point.. what could possibly go right?
Anyway.. Switzerland. We arrived. First stop was the expo (conveniently right next door to our hotel in Interlaken) on the Friday to collect our race numbers. They were showing a video of the race from previous years on big screens and everyone was milling around looking fit, excited and far more prepared than me. I was suddenly overcome with emotion and fear and burst into tears. 'I can't do it!' I sobbed to my husband. 'Look at that' pointing to the massive mountain 'what are we thinking?'. Fairly pathetic really, but given the physical and emotional roller coaster I've been on over the last 3 years, perhaps not that surprising.
'We're here now' he said encouragingly (or perhaps he was just deluded too) 'we've just got to give it a go and have fun, and see how far we can get'. But I wanted more than that. I wanted to finish it, I wanted to experience the most beautiful marathon on the planet and I wanted to tick that box, and share it with the man who's been by my side through thick and thin. No pressure then.
We reckoned, that the best outcome was we'd both finish and it would be an amazing experience. The worst outcome was that one of us (or both) would have to pull out, or worse still, I'd end up in hospital with dehydration (always a possibility). We didn't know how it would pan out, but it had to be somewhere between the two!
I had decided to run with a camelbak so I could take my own electrolyte fluids (having an ileostomy I have greater hydration needs) and not just rely on the organisers, which turned out to be a great decision. It ended up being a really hot day and I drained 2 litres of sports drink as well as taking fluid and food from every feed station.
The route climbed a bit up to Lauterbraunnen - a valley beneath the mountain range of the Jungfrau, Monch and Eiger and the views started to become breathtaking. Cue, more tears from me. 16 miles in and so far so good. Then suddenly the route went uphill and everyone ground to a walk. Running was impossible, so it was hands on knees and a lot of huffing and puffing for the next 3 miles - around 500m ascent over 5km. This was the infamous climb up to Wengen (the beautiful car free town beneath the peak of the Jungfrau) and it lived up to expectations. My heart rate was higher than when running the previous 16 miles. The experience of running through Wengen is sealed in my memory forever - amazing support, stunning views, beautiful buildings and just a very special feel to the whole town. Definintely a place I'll be going back to.
After that the scenery became just more and more breathtaking, with glimpses of the Jungfrau as the route climbed up and up. More climbing with hands on knees as the route changed to more mountain trail and paths. There were parts where we could run a bit, but then it got steep again and back to walking. It was difficult not being in a rhythm and probably the hardest part of the race. Then at Wixi we turned the corner and were confronted by the most stunning view of the Eiger, Monch and Jungfrau range. It was utterly breathtaking. I texted back home to my mum and boys '20 miles done.. we're going to make it!'. For the first time I realised it was going to be possible. We'd got this far and nothing was going to stop me now. I felt elated.
The path then wound up through forest and out onto the mountain side, heading up to the peak of the Eiger with the Jungfrau on our right. Initially we thought we might be capable of running 5.5 hours, but that soon became irrelevant as we just stopped to take photos and just take in this 'once in a lifetime' experience. Finish time was the last thing on our minds and in fact I don't even think I looked at my watch. This was never about 'time' or performance. It was just about the experience and the achievement.
The path then turned into a single file of 'ants' crawling up the mountain. The atmosphere and camaraderie at this stage was just lovely. There was a group of Swiss horn players and a man playing bag pipes right there on the side of the mountain and lots of supporters who'd made a massive effort to get up here and cheer on their friends and loved ones. It put our efforts of getting to Tower Bridge for the London Marathon into perspective.
Running was completely impossible now and it was just a slog onwards and upwards, up the mountain. The markers were now every 250m which felt demoralising as it took so long to get to each one. But the end was in sight. The North Face of the Eiger was just up ahead and that meant the finish line was near. Some kind volunteers helped us all over a particularly technical bit of rock which was right on the edge of the mountain - which was just as well as I had serious jelly legs - then it was a nice flat downhill stretch to the finish line at Kleinne Scheidegg. More tears. In fact this time it was more like big sobs.
We crossed the line hand in hand having had one of the most magical and perfect experiences of our lives. Straight over the line and hubby heads to the beer tent for some 'rehydration' and I just sat down taking it all in and soaking up the enormity of what I'd just achieved.
Not in terms of time (it was 5:51 in the end, not that I really cared - although its estimated it takes around 2 hours longer than a normal road marathon) or even the distance, but in terms of where I've been with my health over the last 3 years. At times thinking I might never get back to running (just re-read some of this blog) and wondering that I might not make it at all. What made it so perfect was the combination of all of that plus the lovely weather, amazing views, stunning beautiful Switzerland (which I've now fallen in love with) and sharing it all with my hubby. It could not have been a more perfect day and I'd go as far to say it's my greatest achievement.
Friends have asked if I'd do it again, but the answer is no. It's sealed in my memory as one of the best days of my life and I never want to change that. It couldn't have been better and I'd never top it.
Talking of things that might top it however.... lets put it like this, I'm working on a list :-) Comrades anyone?
Monday, 2 September 2013
..and I'm back
I'm glad I didn't take this blog down completely, I had a feeling I might come back to it one day and so here I am.
I needed a bit of time to get my head around life with my stoma and adjustment to how it would fit into my life. I feel like I'm there now.. I feel more comfortable with it and more 'at peace' if you know what I mean. It's just part of me and it's become normal.
Over the last few months I've done some really exciting runs and rides and been out of my comfort zone doing some crazy stuff. I've run a 10km in my fastest time in 3.5 years, coming 4th lady in 45:41 at the Rye 10km. I've done a Spartan Race Training Camp where I had to wade through freezing lakes and clamber over obstacles carrying a huge log and we just had an amazing family holiday in France where we did some hardcore downhill mountain biking.
This picture is me with my family with Mont Blanc in the background. We took the ski lifts up and mountain biked down.. not normal behaviour for a 41 yr old mother of two, let alone one with a stoma :-)
But what I've learned is this. Having a stoma isn't a reason to put your life on hold and it really, really doesn't have to stop you doing anything... if you don't let it.
I've been inspired to get this blog going again after joining a brilliant group on Facebook called Ostomy Lifestyle Athletes set up by the brilliant charity Ostomy Lifestyle. We're a bunch of people all over the World who all have stomas of some sort - whether that's an ileostomy, urostomy or colostomy - AND who are fit and lead an active lifestyle.
I've met some wonderful people in the group who do some amazing things - outdoor swimming, triathlons, marathons, cycling, mountain biking, weight lifting and body building. It's a fantastic group, incredibly supportive and the focus of discussion is usually about training, nutrition or sharing our achievements - not on the limitations of life with a stoma.
I feel like I want to share my achievements, experiences and my 'adventures with an ileostomy' again and hope that what I do gives others hope that life goes on.
So, in 2 weeks time (on 14th September) I'm 'running' (read 'taking part) in the JungFrau marathon in Switzerland. It'll be 10 months since my last major surgery and my first marathon with a stoma.
I've been nursing a calf niggle and to be honest it's going to be touch and go whether I make it. I've never had a DNF before, but there's a first time for everything. Either way it'll be an amazing experience.. for no other reason than the views and Swiss chocolate :-) Wish me luck.. I'm going to need it.
I've been nursing a calf niggle and to be honest it's going to be touch and go whether I make it. I've never had a DNF before, but there's a first time for everything. Either way it'll be an amazing experience.. for no other reason than the views and Swiss chocolate :-) Wish me luck.. I'm going to need it.
Wednesday, 23 January 2013
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
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
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.....
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.
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...
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.....
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| 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.
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| Courier Newspaper Group Unsung Hero |
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...
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| 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.
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 :-)
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... |
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.
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.
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.
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