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."

What next?!?!

To be totally honest, it's taken a good couple of weeks to fully recover from Brighton 10km.. another small twang in my calf (the other leg this time), lots of stiff bits and very little desire to train. I actually felt like I'd run a marathon not just a 10km and physically and mentally was a bit wiped out. Fitness is as much about 'recovery' as it is about 'performance' and I guess my delayed recovery shows just how much of a toll the illness and surgery has taken on my body. I can't take anything for granted anymore nor take any short cuts. But this week has seen a turning point and I'm really enjoying my running again.. in fact last night I coached some 'hill reps' thinking I would just stand and shout at everyone, but I managed to join in.. and successfully coped with the session. I seriously surprised myself. 

I'm still focusing on core work (yawn), lots of stretching and spending a fortune on massage and physical therapy treatments.. and without wanting to put a jinx on things, it seems to be working. I saw my good friend Elle at StrideUK last week and she was thrilled with the improvement in my core strength, especially my TVA which she said has improved by about 80% since she first saw me. Big GOLD STAR for me.. Yay.

On Wednesday night I ran with my club and actually ran with the main group rather than right at the back plodding along and it was fantastic.. chatting away with the girls and feeling like I was 'part' of the club again. Loved it!

Brighton 10km was great, but what I'm going to do next? I have absolutely no clue.

Not having a goal is a new situation for me and one I'm not entirely comfortable with. I honestly don't know what I'm capable of anymore and the rules are all re-written. That said, I'm keenly aware that I've been through the mill and don't need any undue pressure.. but I do need something to aim at... but how do I work out what the right goal is going to be?

The Virgin London Marathon is now only 19 weeks away and as much as I'd love to be there, I suspect it will just be too much too soon. Just the thought of it makes me feel under pressure - so I guess it's not the right goal just now.

A half marathon or spring triathlon might be just the thing instead and may provide a better balance of sports to keep me injury free.. anyway.. your suggestions are gratefully received! either way, I need something to inspire me, provide the right level of motivation but not finish me off completely. Something I can be proud of doing but not demoralised because of my lack of fitness or end position or time. Answers on a postcard please!

On another note altogether I've been reading a blog about an article in US Cosmopolitan that has caused a bit of a kerfuffle in the 'ostomy world'.

The woman in the article referred to her 'poop bag' and implied she was pleased when it was gone.. and this has seemingly offended some people. It got me thinking about how I felt about my bag and was I also offended by the terminology? Jess (the blogger who criticised the article) has an ileostomy (like me) and happens to be a fantastic advocate, raises awareness and shows that it isn't something to be ashamed of. But unlike Jess, I'm not entirely sure I'm offended by the terminology... after all it is a bag and it has poop in it.. hence it's a 'poop bag'. It's just a fact. 

There are of course days when I wish I didn't have it either and I look at it and find it repulsive. When I had a reversal last October I was thrilled to get rid of it.. and actually wrote 'good riddance' on the bag before being wheeled down to theatre. Little did I know that I'd be begging the surgeon to put it back only 8 months later. I now have a significantly better quality of life because of it, and I'm lucky there was a solution for my illness.. many are not so fortunate. I guess I do have my own way of dealing with it.. and blogging and writing about it is one of those ways. I'm not going to hide it and I'm not ashamed of it .. but it doesn't define me. I don't consider myself to be disabled nor do I see it as a reason not to do things.. in some ways I consider it a challenge to overcome. But that doesn't mean that I think everyone should feel the same way. Many people struggle and many people never come to terms with it - perhaps like the woman in the Cosmo article.

I wouldn't say that I love my bag, but it has given me my health (and running!) back and for that I'll be forever grateful. It was a fascinating debate though and shows the depth and diversity of feelings that people have about their illnesses, experiences and life with a bag. Just shows how different we all are and we're all just coping in the only way we know how.

All the more reason for a blog like this I suppose. What I hope to do here is simply raise awareness and share my feelings, experiences and emotions (good and bad) about living life with an ileostomy.. or should I say 'adventures with an ileostomy' :-) 

A bend in the road is not the end of the road... unless you fail to make the turn. Unknown

Today I'm feeling pretty tired, emotional and very proud... Yesterday I took my beginner running group 'Sarah's Runners' down to Brighton 10km - all 35 of them! For some it was their first ever race, for others the furthest they'd ever actually run..... and for me it was my first proper race in 18 months and my first race with my ileostomy.. 


I'd moaned on all week about not being ready, being too slow, about having sore legs, about how it might set me back and I had swung back on forth on the decision about whether or not to take part. I've lost a lot of confidence over the last 18 months and I was really nervous about putting myself back 'on the line'. It would have been much easier just to support the others and use that as an excuse not to run.. especially knowing that most of them would actually go faster than me and I would probably be about 20 minutes slower than my best. No-one makes me feel like that though.. the group are amazingly supportive. I'm the one who beats myself up.. 


But on Saturday I decided to stop with the moaning and just toughen up and get on with it ... no excuses. Saturday night was spent getting my kit together, hunting for safety pins and deciding what to wear and feeling nervous.. just like times of old.  So on Sunday, we all loaded onto the coach and headed off down to Brighton, everyone very nervous and excited! Before the race we all got warmed up and it was a brilliant sight seeing everyone in their club t-shirts.. I was so proud of them all.. they all looked fab! 


Before the start I had to visit the loo a few times to empty the bag which caused a bit of a panic. I'd forgotten how my body would react to pre-race adrenaline and hadn't appreciated how it would speed up my output into the bag. When I get running though, there is a shift of blood flow away from the intestines and the bag doesn't fill up at all, but I didn't want to start the race with a full bag as a) it's really uncomfortable and b) it makes a rather large bulge in my lyrca.. not a good look.  With hindsight I should have taken some immodium to slow things down - something to remember next time.


Anyway... onto the start line and I was standing with my friend Anita.. who is rather ironically my surgeon's secretary. She totally understands everything I've been through and knows more about my bowels than I do! It was quite a poignant way to start the race with her and she gave me a big hug before we started which was lovely and made me feel very emotional. I set off very conservatively not knowing how I'd feel or even really having any idea how to pace it. The feeling of 'racing' came back pretty quickly though and I found myself wanting to push on and not let people pass me.. I realised my pace was going to bring me in under the hour and possibly even 55 minutes.. that was a surprise! After about 7km I was feeling quite strong and managed to push on a bit more. I ran with a couple of my group - Sema and Raquel - for a while and that really spurred me on. I managed to find a finishing kick from somewhere and crossed the line in 53:48. I saw loads of friends around the course.. people I know from all different aspects of running as well as my lovely hubby and the boys who had come to watch - and they all gave me a lovely cheer! it was just brilliant. 


But what surprised me the most though was how much I loved it! I just loved being part of a race again and even though I was 13 minutes slower than the last time I ran Brighton 10km 3 years ago.. I couldn't have worked any harder and I loved the adrenaline kick of racing hard! My max heart rate was 186 and average 168. Must have been a bit of a shock for my body as I haven't seen a heartrate like that for a VERY long time.  Running down the finish chute with everyone cheering was just amazing and I had a giant smile on my face. I felt like a proper runner again and well.. just like ME! 


Everyone in the group did so well and really enjoyed themselves. I know I wouldn't have done the race without their support either, so we are all helping each other and it's just brilliant. I was very proud of them all and if I'm honest... I'm proud of myself just a bit too. 


This has been a huge turning point and I've proven to myself that I can be back in the game. Whilst I will always need to take care of myself a bit more than most and stay on top of injuries, recovery and nutrition.. I also need to be a bit more confident in my body and push it to see what it can do.


It can only get better from here and this has been the confidence boost I so badly needed.  It would have been easier to watch from the sidelines, but I launched myself out of my comfort zone and into the unknown.. and it turned out just fine.  


I might have been taken 'off track' for a while but I'm slowly finding my way back to the road. It might be a slightly different road to the one I was on before, but maybe it's actually heading in a better direction.

Seems I spoke too soon!

If I was 5 years old, I'd be stamping my foot and declaring it all to be 'so unfair'. That's exactly how I feel right now as I'm sitting here with an ice pack on my calf. But as I'm a grown up, instead of stamping my foot and having a tantrum, I'll just have a moan in my blog instead ;-)


I guess now I look back with hindsight, I realise I'd started to do a bit too much over the last week or so.  A 7 mile run last Saturday was really demoralising and I ran too fast and with too many hills. I had gone with a (faster) friend and I just couldn't keep up with her, so I ended up having to push it too hard and was completely wrecked when I got home.. bursting into tears as soon as I got through the door. I know that sounds childish, but it just feels like I take one step forwards then get knocked back again.. and I'm having to dig really deep.


I'm pretty sure that long run then contributed to some tightness in my lower back and  hamstrings which has resulted in my calf going 'twang' when I was coaching yesterday.  It's a relatively minor tear in my soleus, but it's just annoying when things were starting to go well and it just means taking a few days off, icing it, getting some treatment and seeing how it responds.  It's hardly surprising given the state of my core stability and despite doing my exercises, it seems it's just not enough. 


It's SO frustrating and so hard to know how much I can (or can't!) do. The rules have all changed now and I'm having to relearn how my body responds, recovers and progresses. And as much as I love my beginner group and my coaching work, it's really tough watching everyone get faster, fitter and feel so good about themselves, while I'm slowly struggling on. People say that I'm an inspiration, but I don't feel like it. I just feel unfit, overweight and mentally knackered from it all. 


Having the ileostomy in itself isn't really a problem any more. Now I'm using convex bags I haven't had a leak in a month (yippee!!), I'm figuring out the sorts of food that work best (nuts and porridge are still off the menu!), my blood sugar levels are better and I'm feeling recovered pretty much from the surgery itself. 


The PROBLEM is that my body is wrecked from having 4 abdominal operations in a year and the posture and body composition changes that have gone with that. I've pretty much had 16 months off training, have lost a lot of muscle (and gained plenty of lard!) and my immune system has taken a bashing too. Some issues at home with my 12 year old and having to find a specialist school for him, are also causing my stress levels to rocket and I have an almost permanent headache. Stress, recovery from surgery and running don't really go very well together!


People ask me if I'll be able to get back to 'racing' again.. and the answer to that is I have no idea.  Last week I thought I might be able to run the marathon in April.. this week, I'm not so sure. All I do know is that I'm going to have to ramp up the rehab, stretching and strength/conditioning stuff if I've got a hope of running more than 5 miles ever again! So it's time for yet another rethink. Pilates, swimming, gym work, foam rolling and massage need to be a higher priority - I can't afford to be complacent for one second. 


In the words of Dick Wolf 'As soon as you get complacent your show gets cancelled'. 

Finally a Breakthrough!

So, I've been following this heart-rate training method for the last 4 weeks. Basically keeping my heart-rate as close to/under 70% of my max (140bpm). It has meant walking up hills and plodding at about 11 min mile pace. To be honest it's been really frustrating and fairly depressing.


But deep down I know it works, so have persevered.. and I'm really glad I have. On Saturday I did a regular 5 mile run from my house and again stuck to the heart-rate thing. Glancing at my watch I realised that my pace was much quicker at the same heart-rate and I didn't need to walk up any hills.. and by the end of the run I was a whole 7 minutes faster than 2 weeks ago for the same average heart-rate. A MASSIVE breakthrough and proof the the heart-rate training method really works!


Ok, so still not exactly fast, but certainly a huge improvement.  It made me feel that maybe, just maybe, the London Marathon might not be that insane an idea after all.


Talking about the London Marathon, I have just agreed to be the official training consultant/coach for the Cardiomyopathy Association Team. So I'll be helping their team with their training and preparation for the Virgin London Marathon in April. I'm really honoured and excited to be helping them and they're a great charity. I think it will also help me focus on my own training and it'll be an interesting journey to see how we all get on over the next 6 months.


I've also been getting out on my bike and really enjoying this lovely autumnal weather. On Sunday (after my breakthrough run on Saturday) I had a fantastic bike ride with my friend Steve. 33 miles and 2500ft of climbing (we happen to live in a very hilly area) and it was brilliant! My longest ride since June 2010 (and that was 56 miles in Weymouth Half Ironman)!  I was completely knackered afterwards, but in that lovely 'post exercise tired' sort of way.. rather than in an 'ill' sort of way.  I'm always nervous after pushing it like that (I have to confess that my heart-rate didn't exactly stay under 140) and wonder how I'll recover, but so far, my immune system seems stronger and my tolerance to exercise seems to be improving. FINALLY !!!


I'm going to show this stupid bag who's boss here! I was robbed of my Ironman last year from being ill, but having an ileostomy isn't going to stop me getting back there now. In the words of Michael Jordan...
'Obstacles don't have to stop you. If you run into a wall, don't turn around and give up. Figure out how to climb it, go through it, or work around it'. 

Exactly 3 months on..

How quickly time flies! It is exactly 3 months ago today that I had surgery to create a permanent ileostomy. Having had perforation of my colon last year and peritonitis, my colon was so damaged that it basically stopped working - so now it's bypassed and the end of my bowel is a hole in my abdomen. Nice trick!


That means I've had my little stoma (the technical name) for 12 whole weeks. Sometimes it feels like forever and sometimes just like yesterday. Sometimes it just doesn't seem real at all.


I'm usually a really positive person, but I have to admit that recently a few negative thoughts have been sneaking into my head. Up until now I've been so ecstatic about feeling better, about being able to eat, sleep and exercise again that I didn't care about the bag... in fact I was grateful for it.  But now the euphoria of feeling better is starting to wear off a bit.. and I catch myself thinking 'how am I going to live with this thing for the rest of my life?' I'm sometimes repulsed by it and if I'm honest just sometimes REALLY wish it wasn't there at all.  This whole journey has been crazy.  18 months ago I was training for an Ironman thinking I was invincible and superwoman .. Here I am now (never having made the Ironman) with a permanent colostomy bag, having survived a life threatening perforation of my colon and now faced with re-building every aspect of not only my fitness, but my life and my career.  Sometimes it just sucks!


For some reason however, these are the cards I've been dealt and it is what it is.  I have to remind myself that things could be a lot worse. If I had MS or Parkinsons disease or cancer for example... something that really prevented me from living my life the way I want to. The reality is that the bag is nothing more than an inconvenience and it needs to be put in it's place. It is not going to stop me from doing anything! so there. 


On that note.. my actual training has been going pretty well, although painfully slowly. My heartrate is feeling more stable and I can actually jog up a hill now without it shooting through the roof.  This last week I've clocked up 15 miles of running and 35 miles on the bike as well as my core stability work.  As ever its all very steady and slow, but already I'm starting to see some tiny improvements in pace for the same heartrate and recovery is becoming more predictable. Hooray! about time. Don't get me wrong, I'm still running at snails pace.. but it's starting to get a little easier and I'm really enjoying it. If nothing else the 'lay off' has given me a renewed sense of enthusiasm for training... and that in itself feels amazing!


I still have a bad case of 'skinny fit runner' envy though and watched the recent Ironman World Championships in Hawaii with a mixture of awe and jealously! I'd always dreamed that one day I just might qualify... now of course it'll be harder than ever and I have hurdles which I'll probably never be able to overcome. So I think it's one goal that I'll have to put in the 'dream on!' box for now and focus on a more realistic target - the local 10km to start with.

To put things in perspective though. My lovely dog Willow has just qualified as a PAT (pets as therapy) dog and we just had our first 'date' at a local nursing home which specialises in dementia care. She was an absolute star and everyone loved her - feeding her treats, patting her and she wagged her tail a lot! It was a really lovely thing to do and all the residents were so grateful and really enjoyed spending time with her. It was lovely to help put a smile on their faces and just give a little something, no matter how small. It did make me think though... what have I really got to complain about??? life is just too short and even though I have this stupid bag to deal with... it's nothing really. Certainly not compared to those poor old folk in the nursing home suffering dementia and unable to live in their own homes. One day, probably not that far from now, that could be me sat in my nursing home, patting the 'therapy' dog brought in by a local volunteer.. I just need to grasp my life in whatever shape or form it might be in and live it to the full. So it's time to push those negative thoughts from my head and be grateful for my little bag which has given me my health back. Positive 'head' is firmly back on.. and sorry for the moan!
I don't know who Merle Miller is.. but I do love this quote. 


"Everyone has his burden. What counts is how you carry it."
 --Merle Miller 

London Marathon.. I'm in!

So I'm officially in the London Marathon for 2012.  It's on 22nd April.. which is basically 28 weeks away and I have a 'Good for Age' place! Ha! A lot has happened in the 2 years since I gained the qualifying time at Paris Marathon.. and I'm about as far from being 'good for age' as I could be. I think I'll be better off running with the fairies and rhinos off the red start. Do I think I can do it??? Honestly I have no idea. It's not for the lack of desire.. I desperately want to be there and am motivated to train, but it might just be too much too soon.  On the basis I can currently run for 5 miles (walking up hills I might add!) it seems like a pretty big task ahead.  I think I'll just build the miles and see how things go..  


Looming closer though, is Brighton 10km which is 7 weeks away on 20th November. I'm taking a big group from my beginner running group (over 30 of us!) which is fantastic, but I have a feeling most of them will actually run faster than me! They all know about my surgery and what I've been through and everyone is very supportive and lovely, but it's going to be a tough one to watch them all disappear into the distance..


My training is going ok though and I'm beginning to build the miles, but I'm really nervous of doing too much and pushing myself.  I'm religiously sticking with my sub 140 bpm heartrate training and hoping I'll start to see an improvement in pace soon. But I'll admit it's getting boring! However I've got some great friends (and an amazing hubby) who are happy to run or cycle slowly with me and I feel really lucky to have such great support :-)


On the nutrition front, since I've started doing more exercise, my blood sugar levels are all over the place and I find myself scoffing bags of the kids sweets in desperation! Not great I know.  Because of the ileostomy, things I eat can whizz through my system and be out and in the bag in less than an hour, and consequently my energy levels are really inconsistent. It's almost like being diabetic at times (I'm not) and I found myself in Marks and Spencer the other day shaking with low blood sugar and having to buy (and eat) an entire bag of Percy Pigs!  A healthy low GI diet (with lots of fibre, seeds and nuts etc) which helps to stabilise blood sugar just isn't working for me at the moment and last night I was close to having a blockage after overdoing the salad, nuts and jacket potato skin.  It's all a massive learning curve and I'll admit I'm finding it tough to get it right.


I have to be honest, there are times when I look at the bag and wonder how on earth it got there! the last 18 months has been such a weird journey and here I am now with a permanent 'colostomy' bag and the challenges it entails. Without wanting to complain, sometimes it just doesn't seem fair. 


I also still haven't quite gotten on top of the leaks and haven't felt 100% confident with the security of the bag. There are times when I can feel it starting to itch and feel sore.. and the inevitable leak begins. Then I know it's time to rush home for an emergency shower and change.  It shouldn't have to be like that and we shouldn't have to suffer embarrassing leaks. So I finally gave in and tried what is called a convex bag. This has a hard ring which goes around the stoma and pushes it out.. even though it's more uncomfortable and obvious under clothes, I've tried it over the last few days and it seems more secure and trustworthy! so for the moment I'm feeling pretty happy with it and more confident. Phew.. 

On another note altogether, my 12 year old did a local aquathlon on Sunday. He had to swim 200m and then run 1500m. He's not hugely competitive and his training has left plenty to be desired, but it was all about having fun and being proud of himself. He was very nervous to begin with, but had a great time and did really well! But for me, just being part of the 'triathlon' scene again was amazing and I loved being poolside watching the swimmers and mixing with the other obvious 'triathlete' parents (their Ironman T-shirts gave them away). Setting up transition and helping him get ready was really inspiring and exciting and just made me want to be part of it all again.... So whether I do the London Marathon in April or not, I know that whatever happens I'll be signing up for a triathlon next season. I wonder if they'll let me compete as a 'novice' again?!