Running with an ostomy – getting ready for challenge 66


Not my best look - post run

Not my best look – post run

All my life I’ve dreamt of running a marathon, but I’ve never got round to it. There are all kinds of reasons why I’ve never signed up for one – including laziness, and the fact I’m rubbish at disciplined training regimes – but the main thing that has been holding me back has always been my IBD, and now that has all but vanished I guess I’ve run out of genuine excuses.

As you have probably gathered I’m no couch potato. Even at the height of my most serious flares I have forced myself to do exercise, sometimes with disastrous consequences, including fainting and blackouts. I’ve learnt the hard way that pushing your body to the limit when you have lost a serious amount of weight and your body is already battling to survive can be incredibly dangerous. But I have always, and will probably continue to have, had a very stupid habit of ignoring my body’s cries for help – I almost seem to be hell-bent on punishing myself for everything, even when there is no reason to.

Bend and stretch :)

Bend and stretch 🙂

I’m no fitness fanatic, but I love exercise. At times I am lazy but most of the time I live to swim, dance, run, basically anything that gives me that satisfyingly free feeling. Exercise makes me feel good about myself. And, at times, when my illness has been at its height, it has helped; mostly as a distraction from the pain, but often as just a way for me to relax and let off steam. A few years ago I swam 120 lengths every single morning (or evening). I was the fittest and most relaxed I had ever been, and I did find that it helped me to manage my illness, simply by relieving some of the stress from work – the problem is I did go a little bit over the top with it.

If you don’t believe the full extent of my pig-headed stubbornness, what follows is an example of me pushing myself to the extreme.

At the hight of my last full flare, in the year leading up to my operation, I ran The Great North Run. Yes, great idea Rachel. I struggled around the whole course, my whole body feeling like it was going to disintegrate into the tarmac. If it hadn’t have been for the amazing people who were also running for Crohn’s and Colitis UK who ran next to me, shouted words of encouragement and told me their stories, I probably would have given up a quarter of the way round. I needed the toilet constantly and had to force myself to keep running, made even harder by my injured leg wrecked by a crippling bout of cramp the night before, which left me hardly able to walk on the morning of the race.

http://www.dailypost.co.uk/news/local-news/chronicle-reporter-runs-great-north-2651519

Hobbling (well crawling) over the finish line was one of the proudest moments of my life. I’ve never felt so relieved. I could hardly speak, move or breathe, (and struggled for days after) but weirdly enough, despite the pain and agony, a part of me wanted to do it all over again. I guess the exhilaration and sense of achievement is addictive.

Me and sister Hannah after finishing the GNR

Me and sister Hannah after finishing the GNR

That was my first competitive run. I’ve often thought of doing another, potentially a longer one, but I just couldn’t begin to comprehend how my Colitis would cope with a run like that again. On the day of the GNR I had to do everything in my power to keep my body in order and my diarrhea at bay. Often the pain in my abdomen was agonising and it took all the will I could muster to not give up. I can’t imagine what would have happened if that had been a marathon – no number of toilets in the world would have been good enough in that situation – I would have either given up or died trying.

But now that I have my stoma things are very different. Yes, I guess I am still within the recovery period and so shouldn’t be attempting anything ridiculous, but in the past few weeks I have started to run again and it feels fantastic. I’m almost back to the fitness levels I had before, and I’m more motivated than ever. Yesterday I got up at 7.30am (yes on a Saturday) and ran 2k (I know that’s not far) averaging six-minute a Kilometre – which for me is pretty damn good. I feel happier, I’m eating better, and putting on weight, which after being so tiny for so long is a weird feeling and one that is a massive learning curve to get used to.

Ok, last year I did the Santa Dash (so a little bit of a competitive run) for The Countess of Chester BabyGrow Appeal. Which was exhausting as we were boiling in our outfits and I dragged Andy along as a lego man!!! But that’s no marathon, it’s more of a sprint.

After the Santa Dash

After the Santa Dash

But now, I’ve decided it’s time to start planning for my Challenge 66. Steady on, I hear you say, wasn’t Challenge 66 Cheese Rolling? Yes, it was, but I realised the other day that cheese rolling is part of the Visit England Challenges – massive error to duplicate challenges – so I have changed it to a marathon. Whether this was a size move remains to be seen, but it is on the list now, so as they say my fate lies with the Gods.

I’m taking this very seriously. I’ve bought myself a Garmin watch (other brands are available) and I’m going to be sharing my progress, good and bad, with you. I aim to run at least three times during the week and once at the weekend, and hope to do at least 12K every week, come rain or shine.

But I need your advice. I’m obviously going to be running for Crohns and Colitis UK, but I also want to raise cash for Ostomy Aid, so the big question is, which marathon should I do? Let me know which ones you have done and which have the best routes, atmosphere etc? I wouldn’t mind doing one abroad, as long as it isn’t too hot, cold, or humid that is. I mean I may swell get a holiday out of it, right?

Advertisements

First swim with my stoma – the best feeling in the world


This weekend I felt truly free for the first time since my hospitalization six months ago.The bizarre thing is that although I have been feeling more human than I ever have during the 13 years I have suffered from IBD, ever since my operation I haven’t felt truly myself. It hasn’t been because I’ve been mourning my large bowel, or feeling unattractive – having my bag doesn’t make me any less attractive, if anything it has given me more confidence than I’ve ever had in my life – it’s because I haven’t been able to swim.

My lovely family - fish and chips at the fish quay

My lovely family – fish and chips at the fish quay

I know that might sound ridiculous, of all the things that have happened and I haven’t been able to do since the operation – from the very start where I couldn’t walk, wash or eat properly to struggling to comprehend an intimate relationship with my ostomy bag – that I would find the inability to swim the most restricting thing. But I really have.

Before my operation it didn’t matter how much pain I was in, how much blood there was or vomiting, all I wanted to do was to swim. Nothing would stop me getting into that water, putting my head down and going hell-for-leather down the middle lane. No amount of pain, blood and guts would stop me swimming. Swimming gave me exercise, focus and a way to get rid of stress. When I swam I felt the whole world drift away, any worry from work, home, hobbies, community projects just fell off my shoulders and into the pool and my mind would be free, unable to focus on anything apart from the repetitiveness of counting the number of lengths and, sometimes, annoyingly, dodging screaming kids.

Although some people would argue intensive exercise is not good for people during a UC/Crohns flare-up…from my experience I would argue the opposite. Running, jogging, hiking and dancing have always helped to give me focus on something other than the pain, and to ease stress – usually the trigger and exasperater of my particular disease. My main problem has always been over doing it. Usually by the time I’ve stopped swimming I’m sweating, which is something that’s puzzled a lot of people – just how do you sweat under water?

Anyway, normally swimming post surgery is not a problem. Ok its advisable and necessary to wait for any open wounds to heal and to not over do exercise in the first few months after an operation, and to basically take it easy – you don’t want to suddenly decide to become Michael Phelps over night. For me it wasn’t about fear but a great bit gaping scar that just would not heal and could not be submerged in water. Even a shower caused chaos – but there was no way I was going without them.

As I told you in the previous blog entry, despite still having my fistula pumping out gunk (into a bag, no hygiene risks here) my surgeon gave me the green light to submerge myself last week. He said I would be “fine” to swim and bathe, but to be sensible. So naturally at the first opportunity I went shopping for swim suits that flatter my new figure…only to be left almost crying on Chester’s high street as I realised no where stocked nice swim suits or high-waisted bikinis in the depths of Autumn – there’s simply not the demand.

The perfect coat shopping at Fenwick's in Newcastle

The perfect coat shopping at Fenwick’s in Newcastle

I was even left disappointed by Next’s catalogue range. I’d pictured lowering myself into the glimmering waters wearing a 50s inspired high-waisted bikini or a more Victorian ask bathing suit with stripes and all that jazz – I’m so nostalgic at the moment, I blame it on Mad Men – but the two viable options in the catalogue left me feeling far from inspired. It was a shame as I had been pinning my hopes on Next after a few tweets from ostomy societies and ostomates recommending them for their fab costume range.

Anyway, despite not being able to find my dream confidence-boosting costume my boyfriend booked us both a hotel with a swimming pool for our trip to visit my sister in Newcastle for her birthday. So after a rest on Friday night following the long drive I donned my very old post surgery swimming costume and went for a morning dip. Although my swimming costume didn’t exactly flatter my new body, with the lycra clinging around my ostomy bag, it didn’t really draw attention to it either. At first I have to admit that I was very self-conscious about it, pulling a towel around my waist to hide my stomach and bag, but once I got into the water I couldn’t have cared less.

Once in it was like I was alive again. I tentatively lowered myself in terrified that my bag might float off my skin or my fistula bag would fill up with water and fall off. But once I was in I had no concerns, but trying to stop myself going mental doing hundreds of lengths and giving myself a hernia. It was tempting, I was soon back into my natural rhythm, but after 20 blissful lengths I forced myself to give in – exhausted and realising I was working muscles that, well, hadn’t been used in months.

Very hungry after my morning swim

Very hungry after my morning swim

I’ve never been happier. I went swimming again on Sunday morning, doing 30 lengths at a fantastic pace, racing in between crowds of kids and generally getting back to my own good old self. I can’t wait to go swimming again, but with everything that’s going on now I don’t think that’s going to be for a while.

Climbing 275 steps – one giant leap on my road to recovery


I’m in a fair bit of pain as I write this. I can’t quite described what’s going on, or

A giant leap for Winnie

A giant leap for Winnie

comprehend what the problem is, all I know is that it is something to do with my fistula and that it is nothing like I have ever felt before. I’m not quite sure why it’s happening, or what’s happening, but I’m not feeling great. I’ll talk more about it tomorrow, but I thought I would mention it now as I’m drugged up to my eyeballs, so please forgive me if this post reads a bit like a druggie’s random train of thoughts…that would be the tramadol talking!

Ok, so it’s no Mount Everest but on Saturday I climbed 275 very steep and winding steps to the top of York Minster tower. Why? Because it is part of the 101 Visit England places to visit before you die…and because I have never done it. Over the years I have had the pleasure and honour of playing in the Minster a handful of times with a brass band I was a member of (have I failed to mention I am a band geek 🙂 yes I play the euphonium..an instrument which is about ten times to big for me and makes me look like a small child playing a giant’s trumpet), during an annual charity carol concert. Playing in the Minster was always an overwhelming and truly awe-inspiring moment; the music swells up into the rafters, filling every nook and cranny of the enormous building, rising up into the heaven’s, creating an ambience that seems to vibrate around your very soul. Something about hearing a brass band perform in a church is so humbling, and the sound, the pure, stripped-back sound of a single note echoing through the pews would send shivers through the soul’s of even the most cold-hearted person in the world. It’s times like these that I feel the most alive.

At the start, before I ran out of puff!

At the start, before I ran out of puff!

Anyway, despite having performed in the Minster I have never walked up the Tower. So after weeks of umming and ahhing about making the trip to York me and Andy finally jumped in the car and braved the trip on Saturday. It wasn’t the nicest day, drizzly and overcast to say the least, but that wasn’t going to stop us. I have to admit that this is one of the things I love about this blog and my 101 challenges, that I can’t just say ‘oh I can’t be bothered’ anymore, or ‘I feel to ill’..if we’d sacked the trip off on Saturday just because of a little bit of rain I would have felt that I’d not only let myself down but I would have let down you guys, and the rest of the IBD and ostomy community…ok, that might be a bit over the top but that’s how I feel, and it drives me to keep going even when I just feel like poo!

And that is the reason why me and Andy paid ÂŁ15 each to get into the Minster and climb the tower. I know ÂŁ15 EACH!! If it hadn’t been for the fact that I had to do it for my challenges I would have down right refused to go in, I would have turned around and walked out just for the shear principle that I will not pay that much to go into a place of worship. I mean I have travelled to some incredible places and seen some incredible churches including Notre Dame and the Sistine Chapel and I honestly don’t think I have ever paid that much to go into a church before…I know that it costs a lot to upkeep a church of that size, but seriously that is a disgusting amount of money to just walk around a building and climb a tower, which, I hasten to add was covered in graffiti the whole way up (how people have time to etch their names into stone while being herded up those steps really boggles my mind, they must take chisels and hammers!)

Anyway the walk up was horrific. Yes, I know that it has been months since my

At the top - upset about the netting, ruined the view

At the top – upset about the netting, ruined the view

ileostomy op but I am still not as fit as I was before my surgery, and the whole situation was made worse by the fact that there were around 50 other people staggering up the steps, so there was no time to pause and catch your breath. Seeing as I have a slight fear of confined spaces – I know it’s neurotic but I’m one of those people who burst out of a lift when it opens like its been on fire – it wasn’t an ideal scenario. I spent the whole climb up clinging to the railing and listening to the family in front rabbiting on and on at each other – I got the impression that someone was in big trouble! Winnie (my ostomy) was not having the best of days, but managed to stay calm enough not to have a leak as I tried to heave my tired legs up the hundreds of steps, very much aware that if I had a dizzy spell the rest of the people behind me would fall down like dominos back into the Minster. It wasn’t my favourite experience, but when I reached the top, exhausted and with legs shaking like jelly, the views where beautiful, (if not ruined by the barbed wire netting all over the place no doubt to stop jumpers) and I felt a massive sense of achievement that I’d climbed all those steps – ok, so it’s not that big an achievement but when you take into account that months ago I couldn’t walk to the toilet and back without someone holding on to me, it really is a giant leap in the right direction.

The sense of achievement and relief was short-lived when I realised I had to walk all the way back down, which is always harder than going up, and was made worse by the fact my muscles seemed to have locked and were frozen in the walking upstairs position. But at the end of it I might have felt a little tired and dizzy and my legs might have felt like jelly, but I looked a down sight better than a lot of the people who came red-faced and sweating down the steps, puffing and panting like they’d run a marathon – and I guess they didn’t have the excuse that they’d had major surgery just a few months ago.

MMM CHOCOLATE

MMM CHOCOLATE

After completing the challenge me and Andy treated ourselves to a cup of hot chocolate at a nearby chocolate cafe. I’ve been to York a fair few times but until this weekend I had no idea that York was most famous for its chocolate heritage. It seems that York is the birthplace of KitKat and other delicious treats that I unfortunately haven’t had the pleasure of eating in years BOO! I was so excited as this was the first time I had been able to have a hot chocolate in public since I was diagnosed with being lactose intolerant around four-years-ago. This cafe did dark chocolate and the option to have soya or rice milk instead of the normal dairy milk. It was an unexpected treat, and very rich and yummy…but as per usual Andy’s drink looked far tastier than mine and I have to admit that spoiled it a bit for me as the green-eyed monster raised her ugly head, and I spent the majority of the time in the cafe wishing I could have a sneaky taste of his very scrumptous looking white hot chocolate! – sometimes I despise being lactose intolerant.

We finished off the day walking through the Shambles, which despite the drizzle was a very enjoyable experience, ending up in a vegan cafe for a cake, as I wanted to have a little treat, which was an underwhelming and pricey experience. The pudding was mediocre and I didn’t like the very hippy atmosphere of the place (nothing against it, just not my cup of tea), Andy really didn’t like his coconut paradise cake…not really sure who decided paradise was the right word to describe it, more like bouncy sludge?

I really am tiny!

I really am tiny!

Anyway soon after that we were forced to give up and go home as my remaining colon started kicking off and my fistula started to cause me problems. Luckily that was at the end of a very full day, so the timing wasn’t too bad, although I obviously would rather it didn’t kick off at all.

My verdict? York is a beautiful place with stunning heritage, shops and scenery. Don’t visit the Minster unless you really have to see it, it is definitely a once in a life time experience. The views from the tower are beautiful, but they are nothing compared to other tall buildings across the world such as The Eiffel Tower or the Empire State Building. But, although it was a lot of money, I don’t regret it. I feel like I have really achieved something in my road to recovery and in embracing my life with a stoma, and shown that you really can do anything and that having an ostomy shouldn’t stop you doing whatever the hell you want.

At the Minster

At the Minster

Oh, if you go reward yourself with a hot chocolate. You won’t regret it!

 

 

First run with my ostomy – my love of exercise


Talking about exercising with a stoma after putting on my running shoes for the first time since my ileostomy operation. I may have only managed 1 mile but it’s a start eh?

Also talking about how exercise helped me battle my Crohn’s/Colitis. I’m not saying its a cure, but it was therapeutic and helped me to relax and feel good about myself while my body was dealing with so much crap and basically battling to survive.

I’ll be back running half marathons and raising thousands of pounds for charities in no time right?

Bend and stretch :)

Bend and stretch 🙂