Light at the End

Recently I found myself talking to someone who has a friend who is just about to embark upon a life with an ostomy. A shock ostomy - one which comes out of the blue, and which feels like a worsening rather than an improving addition to one's life. It's easy for me to forget how hard it is for some people to deal with this, as it was such a positive thing for me. But I can easily remember how difficult the early days were, and how my dark tunnel seemed to have no end. 

It does of course have an end, and there is light there. This is my promise. It'll get better. The leaks will stop, the nights will get better, the anxiety will improve. A robust attitude to potential problems will insulate you from those problems, a practical approach will ease your transition back into a normal life. 

I can't tell you how to improve your mental health but I can tell you a bit about the physical changes which will happen for the better, and the learning path you will take.

Firstly, your stoma will change shape and size, possibly quite drastically. And possibly both ways - bigger, then smaller, then bigger again, then smaller again. In the early days it'll change so much that you'll need to keep measuring it over and over. If you cut the hole in your flange too big, it'll leak. If you cut it too small, it'll leak too, because the flange won't sit well. So you really need to measure it each time and you may waste a few flanges until you become an expert with the scissors.

My stoma went down from 35mm to just 17mm gradually, and I bought a cheap and cheerful plastic (washable) vernier scale so that I could measure it easily. Once my stoma stopped changing, I started being able to ask my supplier to cut my holes to 17mm and now a leak is a distant memory.

Next, you will find a product which suits your lifestyle and this may require trial and error. I have an active lifestyle, and I find that the more I cycle, the more I swim, the more my flange deteriorates. I use Coloplast Sensura flanges which resist sweating and which shrug off water. The Hollister flange is more comfortable, but they don't work so well for my lifestyle so I don't use them. Use what works for you.

Finally, you will become expert at changing your appliance. To begin with I didn't let the barrier wipe dry properly, I didn't line my flange up properly, I didn't press it against my skin firmly enough, I didn't clean the adhesive remover off entirely, and as I said already, I often cut my hole the wrong size. I could fall asleep on the sofa and wake up in a mess. I could be driving along and find a creeping warm wetness invading my concentration, when I was 30 miles from the nearest motorway services. 

But these days passed. Whilst you are waiting for them to pass you will deal with a few "emergencies" yourself which, if you look at them positively, will teach you that yes, you can cope with them. Maybe coping isn't too pleasant but you need to remind yourself that there are worse things which can happen. You've already coped with worse things. You've done brilliantly to get this far, and the minor hiccups are easy.

At the end of the day it's only poo, and a warm, comforting shower is only a short way away.

Sri Lanka - Who needs fancy facilities?

I am recently back from a cycling holiday in Sri Lanka. I have to say, I had doubts about booking such a trip - how would I cope with Arwel in a tropical country with facilities different to the UK? With worse facilities?

Extremely well, as it turned out! Ok, I took quite a lot of stuff (twice as much as you need, all advice says) but that's true wherever I go on holiday. The facilities? Well there were good and bad points, but mainly good. So now I know. I can go anywhere, I need never worry about coping with Arwel in other countries. 

Here are the good and bad points.

Good points

• All hotel loos, and many other loos, come equipped with a bidet shower. These are standard in Muslim countries and in many other hot countries where their use is preferred to toilet paper (wetness dries quickly in a hot country). For an ostomate, they are better than loo roll by a mile. I like them so much that I have one at home!
• Those loos which do not have a bidet shower usually at least have running water, and a small bucket (which serves as a flushing mechanism). This may sound primitive, but as long as you have a paper handkerchief in your pocket, you can wet this and use it to clean your pouch after emptying. You can then wash your hands under the tap.
• All places where food is served, no matter how primitive, have hand-washing facilities with SOAP. This is because locals eat with their fingers, and wash their hands before and afterwards. So you can wash your hands properly after using the loo.
• All places where food is served have a stand-alone squat loo on the land behind - you get used to them. There is always a working tap within these and they are cleaner than some I've come across in "civilised" countries.
• Some places (those which are extensions of homes) may not have running water, but a couple of buckets of water will be left outside. (Some of these are people's actual homes, they are generous enough to allow you to use their loo without question. I didn't always realise it was their private loo until afterwards).

Bad points

• I couldn't empty my ostomy "in the field" because Sri Lanka is a hot country, and my hands were so sweaty that I couldn't get my surgical gloves on. I use these to wrap my paper so if I couldn't use the gloves I couldn't wrap my paper and take it with me. I never leave anything behind. Fortunately, there were many loos available to me.

• With the heat, the couplings on my flanges became rather pliable, and they were consequently difficult to get on. This was only because I was on a continually moving cycle-tour. if you plan to stay in a hotel for some time, you can take a cool bag to store your flanges and have your ice-packs re-frozen in the hotel freezer. 

To summarise then, I had nothing to fear though I was cycling in a hot country, moving most days, and staying in diverse standards of accommodation. As tests of coping go, it was a pretty good test.

I would really like it if bidet showers became standard in the UK, but I doubt they ever will!

Swimming Update

I just read my last post about swimming and I want to say that it has truly become a part of my life now, and I love it. Before Arwel, it was out of the question - I was often incontinent, so Arwel has given swimming to me.

• I took two lessons last Easter, and learned to swim crawl.
• I swim 1k in about 27 minutes now, instead of the 40 minutes it took previously.
• I've made 6 swimming costumes to date!

I'm still no athlete (and I'm not even going to mention running) but I feel better all over for my more varied approach to exercise. Swimming is great!

Swimming

I'm on a bit of a fitness campaign. As someone with osteopaenia (a bone density slightly lower than ideal due to lactose intolerance) I've been taking a calcium supplement for some time. But I decided that I'd need to broaden my exercise base from just cycling because cycling does not fulfil the “weight bearing” requirement. So for two weeks I've been running and swimming too. I'll leave from writing about running for now, especially as I can walk faster!

But swimming has been a massive challenge for me. For a start, I have some rather obvious scars from historical surgery and no swimsuit I could find on the internet was ever going to disguise them. Then there's the fact that I am petrified of deep water, and my local 20m pool (less than ¼ mile away) is 3m deep at the deep end.

But when you yearn to do something you will find a way, and I found a pool 20 miles away which I thought would suit me better. It was just the swimming costume problem stopping me, and the potential embarrassment of my body being on show.

I could buy a costume with low legs to disguise my scarring, but not with a swim back. Those with swim backs seemed to have incredibly high cut legs which would shine a torch on my scars. I also wanted an internal pocket, to stop my pouch from slipping out through a leg hole, and a heavy pattern to break up the outline of my appliance. Ostomy specific swimsuits had pockets and patterns and one or two had swim backs, but none of them had low legs.

So I got to work with bits of newspaper, designing a pattern, and after about a week of work (and a lucky find in the case of the fabric) I came up with this:

Front view

Back view

I had spare fabric left over, so I made a two-piece costume too:

Now I've been swimming four times, and I've had people come up to me to admire my costumes. I can hardly believe it but it's true. People like the bright pattern and are disappointed to find they can't buy one the same for themselves, but they take so much making that I simply cannot offer to make one for anyone else. With all the work that goes into them, I can now see why swimming costumes cost so much!

So I'm running, swimming and cycling. But I can promise you this, I'm no triathlete, and I'm constantly exhausted just now.

It will get easier, won't it? 

Riding to Scotland - September 2016

Twelve days' touring around Scotland is an ideal way to get a cycling fix – unless you're the one driving the support van. “Why don't you ride to Scotland then?” said my husband, who was leading a group cycling tour there. It was a good idea with just one problem: I didn't know if I was capable of it. I was still trying to work out what I could and couldn't do with my ileostomy. A year had passed, but I still hadn't worked out where my limits were.

Having loved cycle touring all my life I wasn't going to let an ileostomy stop me. But it was going to present an additional challenge, as I would need to take a whole load of medical equipment in addition to my usual stuff. As for my fitness, I'd lost weight, too much weight; I had compromised strength, and I had plenty of old injuries to cope with too, particularly the weak left leg. It had been a long road back to the beginnings of fitness and the rides I had done since my operation were on a smaller scale to this altogether.

I set off from my home in the Welsh borders alone and unsupported six days before my husband's tour was due to start, my two small panniers and my bar bag being the limit of what I could carry. I would be riding 316 miles to Milngavie, just north of Glasgow, and my first day took me to Chester over familiar roads with Shropshire's hills making for a ride which felt easier as the day wore on. At least two long-distance cyclists overtook me, but then I knew I wasn't fast. It didn't matter if I was slow, I was touring again, and proving to myself that I still could.

The next day took me through through a series of urban landscapes, a day I'd dreaded as there seemed to be very little countryside between. But it provided one of the highlights of my trip when I found myself eating lunch amongst a few thousand dogs and their owners at the “Paws in the Park” event taking over Sherdley Park in St Helens. The infectious happiness of the dog people stayed with me for all the remaining urban miles through Preston and its suburbs! 

My third day was through the Forest of Bowland where the scenery really started to dominate my attention. Although it was my shortest day in miles, it was also my hardest day of climbing, but I made a discovery. My nearly-new bike had never carried panniers before and I was astonished to find that it handled better with them than without, so much so that I rode up hills I could hardly believe I could manage. Those loaded panniers were helping me to balance in my lowest gears so that I could avoid stalling with my weaker left leg. And the climbing took me into the most beautiful part of my ride, I even found the motorway beautiful! Looking down on it from the hill I had just climbed I saw the M6 before me with anonymous traffic speeding both ways; just behind it ran the railway, with freight trains passing by in both directions as I watched; behind that the River Lune flowed ageless and serene, and behind that the Howgill Fells watched over the whole valley. I found beauty in the juxtaposition of all of these disparate threads.

Spot the motorway!

From my B&B in Tebay the next day I swooped down to a turning as a massive flock of gulls weaved around my head. I found myself riding between the two lanes of the motorway which were perhaps three hundred metres apart at this point. Kestrels hunted either side of me in the wide verges as I climbed up onto Shap fell, savouring the barrenness of this bleak wilderness before descending to make my crossing into Scotland.

At Gretna I rode past all of the pretty B&Bs to my accommodation which might seem far from appropriate - it was at a motorway service station! On-site eateries supplied my energy needs as cars and lorries made their fleeting visits, and in my Spartan but cosy room with my bike nestled safely beside my bed, the heated towel rail was a gift for my hand-washed clothes which dried beautifully overnight.

I'd been worried about my fifth day, because I had a lot of climbing to do. But in fact it seemed easy, because although I was close to a main arterial road I rode almost the whole day on a wide cycle-path bordered by grasses and ferns which rose at a similar rate to the gradient railway lines use, the colours gradually changing to Scotland's special autumn palette of amber and lime green. I criss-crossed the main Glasgow railway line several times, and also the Clyde in it's upper reaches. I felt an affinity with the river as I would be accompanying it to Glasgow the next day.

My last day's riding was a ride of two halves – a bleak wilderness moorland during the morning beside another major road where once again I had a wide cycle-path to myself. After my lunch I descended rapidly down to sea level riding through East Kilbride on its heavily trafficked main roads, eventually ending up on the banks of the Clyde in Glasgow. After six miles on the pleasant riverbank I had to climb on busy roads through to Milngavie, and the traffic on those roads was so bad that I rode on the pavement unapologetically. If I'd ridden on the road, I'm sure I'd have died.

As I pulled alongside the turning to the hotel where my husband's tour was to start, I could see my husband and a few of his participants arranged in a loose arc to welcome me. I pulled into the car park to a small round of applause. I'd made it!

All of us feel a sense of achievement when we arrive at our destination but for me, the destination was only the half of it. Before my operation I'd been so ill that to ride even a fraction of this would have been impossible. I'd gained a measure of fitness, and a huge measure of confidence. Now I found myself contemplating a second section of riding, perhaps during the following Spring. Milngavie to John o'Groats perhaps? Then maybe part three another time...

Paul's participants braved long days in treacherous terrain, massive challenging climbs, even more challenging descents, most of the time in biblical rain and with the odd cold virus thrown in. I'd had fair weather throughout, and six days of riding in shorts!

Glencoe

Life is Good

Life is good again. In fact, it's simply amazing - I just can't remember when I last felt this good and when I felt so positive about the future.

When I say I feel good of course I mean that the aches and pains I have are good aches and pains. You see I rode my bike yesterday, maybe a little too far in view of my still some-way-to-go fitness. My right knee hurts, and all of my left leg hurts. And my neck, my buttocks, and my right hand - but these are the types of pain I like to feel!

Yesterday was my first ride after returning from six weeks in Spain. Maybe I'll write about that another time because just now I want to focus on yesterday.

I set out into wind-less Spring freshness, and before I'd ridden ten metres I was overwhelmed by birdsong. I rode to Newtown where I met up with a Sky Breeze ride led ably by a lovely woman called Jackie. With two other girls (both a good deal younger than Jackie and I) we set off uphill, on a main road which on Sunday at least, is relatively free of traffic. I fought to stay on, but Jackie looked after me, riding beside me at all times. We had tea in a charming community cafe and then we set off up onto open moors toward a moorland watershed, and I place I just love. It was a simply lovely road, which I wouldn't have known about but for Jackie's willingness to take on the responsibility of leading others.

There I said goodbye to the girls, to ride home my own way. It was so beautiful in the crisp sunshine, with the cacophony of birdsong and swooping, courting skylarks, that I had to stop after a short while. I dug out my slightly crushed sandwich and ate it by the roadside.

This, as if I didn't know, is why I love cycling - my bike takes me to places that a car can only separate you from. My bike puts me in the land, without that sterilising layer of glass and metal.

I feel like the old me now, and I am back on track. Summer is just around the corner and I can't wait.

Emergency Kits for an Outdoor Lifestlyle

I like to read the blog of The Gutless Cyclist who on 3 December 2015 wrote a piece about not fussing with emergency supplies when out cycling. It's a good piece of advice for many, indeed probably most, cyclists, and it's a very good philosophy. But it's not for me.

Why is it not for me? Well the Gutless Cyclist is a racing guy, and I'm a touring woman. That is, I like to ride from place to place, tour with panniers, bikepack (which seems to be the new name for touring), or just go out for the day. One way or the other, I'm usually out of the house a long time. So I have a little kit, and for peace of mind, I'd rather have it. And yes, I've had to use it.

In my back pocket I have a 5" x 3.5" (12.5cm x 9cm) press-to-close plastic bag containing two paper tissues and two pairs of surgical gloves. That's two pouch empties in the field, and everything I use goes home with me in my pocket. Of course, there are loos in pubs, and I use these whenever it's convenient. But my stoma seems to like to output heavily around an hour after I eat. By then, I've left the pub and I'm in the middle of nowhere.

Being a day cyclist I have a rather large wedgepack on my bike (see 6 November 2015, "The First 500") . In my wedgepack I have a waterproof jacket, a pump, some basic tools, a bike lock, an oatbar and some gels. I also have a small, 6.25" x 4.5" (16cm x 11.5cm) zipped purse with a string I can use as a handle. In this I keep money, my phone, and a stoma change kit.

The kit goes in the zipped part

The fact is, that a stoma change kit can be tiny. I keep mine in a press-to-close plastic bag which is just 6.25" x 4.25" (16cm x 11cm) and which fits into one of the pockets of the zipped purse. When I get off my bike for a break in a pub or a cafe, I wear the purse like a minute handbag.

This bag is smaller than it looks!

Of course, I am an English woman and that means I can carry a handbag. I say this with some pointedness because whenever I spend time in another country I see that guys carry bags as well, but here in the UK, it seems guys are scared of what people might think!

Anyhow, I'm not particularly into handbags in the way that some women are, and I tend to pick mine up cheaply at TK Maxx. Here's a picture of me with my current one. You will see that it's not large and it contains stuff which won't fit in my pockets (that's even if what I am wearing actually has pockets).

I have a kit inside my handbag too, and I've had to use it at a music gig. It lives in a small cosmetic bag which I made out of a bit of spare fabric, measuring 6.5" x 4.5" (16.5cm x 11.5cm). It's a slightly more luxuriant kit than my cycling kit.

Change kit inside...

So that's what I carry. To be fair, if I slap one of these emergency pouches on in a pub or club then I'm probably going to change again in the morning, and do the job better. But for piece of mind, unless I'm in my local pub (which is next door...) then I'd rather have an emergency kit.

We're all different.

Challenges for me, Competitions for You

I like to say that I was born without the competitive gene, and it's true. If you want me to cycle even slower than I normally do, then just tell me it's a race. But I do seem to be prone to setting personal challenges. They're not the sort of challenges which might impress people, and this I have to stress. In fact, I can't stress this enough. After all, your challenge might be simply impossible for me and my challenge might be out of the question for someone else. If I meet someone whose challenge is to ride 10 miles for the first time ever, then I'll be the first to congratulate that person when they meet that challenge. My own challenges relate to me, just as yours relate to you.

So I have just returned from a fabulous six-week stay in Spain and I had a vague aim when I went there - I wanted to pick up a bit of the fitness I lost due to my surgery. That's not a very quantifiable challenge, but I soon found that three particular measures of it crystalized in my mind.

Let me warn you before you read any further that what I'm about to tell you might sound like nothing to you, but to me, it's a reason for me to feel proud. On 3 March 2016, during just one ride, I ticked off all three of the particular measures of my challenge in the following order, with one extra for good luck:

• I completed my 1000th mile of 2016;
• I rode my longest solo ride since my operation;
• I rode more than 50 miles solo in one day; and
• I completed the 1000th mile of the holiday.

The challenge now is to keep some of that fitness, as the British weather adds a level of difficulty which stabs away at motivation!

A Short piece about Shorts...

Before my operation I had the abiding worry that I wouldn't ever be able to wear cycling shorts again, and I searched all over the internet and found no firm advice. I am handy with a sewing machine, so I made a couple of "skorts". But I am delighted to say that I wasted my time. 

If anyone is out there wondering about whether it's possible to wear cycle shorts with an ostomy let me reassure you - YOUR BAG WON'T SHOW AT ALL. The bottom opening sits behind the very top of your pad. If your bag fills it'll bulge a bit, but when it's empty it's invisible, and your friends will never mind your little bulge. You'll be emptying it pretty soon anyway, you already know where all the local loos are. 

I carry a pair of surgical gloves and a bit of loo roll for emptying it behind a hedge - when I'm done I hold the loo roll in one hand, take the glove off around it, and take the other glove off around that. Then it goes in my back pocket so that I leave nothing behind except what nature can cope with. 

So cycle shorts are in. In fact, every single article of clothing I wore before I can still wear. I've splashed out a bit and bought bib shorts - vastly superior for comfort but I couldn't wear them before!

The First 500

It's November and all too soon we will be moving into 2016. This year, 2015, has of course been a difficult one for me but now the worst is over, and I feel better than I ever believed that I could. All sorts of good things await me in 2016 but let me first enjoy the here and now.

Since my operation in June I have had not one day, not a single one, where I have had any kind of sustained stomach pain or any kind of tummy-related illness. I feel simply fabulous.

Fabulous, but not fit. I am riding my bike again, but not as far, nor as fast, as I did when I wasn't ill before my operation. Of course, I was often ill. In fact, as fitness only comes after sustained (ie consistent) exercise, I was never really fit. I had too many periods away from my bike when my bottom was cemented to the loo.

It is quite possible then, that I may hope to get at least as fit as I was before, maybe even fitter.

So how am I doing?

Well my first ride was 3 miles. My longest solo ride has been 35 miles, and my longest tandem ride was a tortuous 55 miles, after which I felt that a bullet to the head would have been kind. Altogether, in a great many little rides, I have covered about 500 miles, the greater majority of them enormously pleasurable.

Miles ridden with friends are usually better than miles ridden alone, miles ridden with friends in good scenery are even better. And miles ridden with friends in good scenery and nice weather are best of all.

So here's a picture of me riding with all of that.

I have set no firm targets, but I did dare a little hope which was that by the time Christmas came, I would be able to ride 30 hilly miles. So I think I am home and dry on that one. I'll feel I am somewhere near to normal when 50 miles solo do not exhaust me.

Did I mention that it was hilly around here? I think my first 50-miler might be in a flatter, warmer Spain, in the New Year!

Sunny Days and Rainy Days

For the time being, my only exercise (apart from going up and down the stairs) is walking. Each day I try to get out for a short walk, and now (I can say with great pleasure) I don't have to lie down afterwards.

Before my operation, my reluctant walks were tense and nervous activities, and very rare indeed. If I walked in open fields I hoped for hedges to dash behind, but often there were dog walkers about, limiting my choices. If I walked in town, I would sometimes have to knock on the door of a stranger and ask if I could use their loo – I've been known to get off a bus to do this, in the days before I stopped using buses. Very few people ever refused, but the kindness of those who allowed me their facilities only made me feel worse about myself and my affliction.

So whether my little walks are doing anything for my legs I can't say; but they are certainly doing something for my mind.

I live in the sticks, so my walks, however short, involve some uphill walking. And they involve inclement weather, because I have missed my Summer and I must make the most of whatever weather comes my way. But the freedom to walk without a nappy, the happiness I feel being free from the stress of possible unforeseen need, these things make up for any amount of adverse conditions. It's just fabulous to get out there.

Though I missed my Summer, there are lots of good things in my diary for the end of this year and the beginning of next. For now though, I just have my little walks. In the rain today, I said hello to the good times.

They're not around the corner, they are here.

Texel Tupps - maybe not too pretty, but anything I see when I manage to get out of my house seems beautiful to me!

To Green or not To Green...

I've always tried to do my bit for the planet. For years, I cycled to work; at home we recycle everything we can. The mantra of the environmentally aware is “reduce, re-use, recycle”, in that order. Unfortunately as an ostomate, re-using is out of the question, and almost all of my used products go into landfill.

I know there are some products out there which might help me to “greenify” myself a bit, such as flushable liners. I hope to try them one day. But for the moment, I have made the personal vow to “reduce” as much as possible. This means that every sample product I have had, every product I have learned that I don't like, and every product which isn't as practical as I wish (ie it's too small), I will nevertheless use. I have a few sample products to which it seems I have an allergy; these will be sent to a charity company which sends unwanted items to those in need overseas. But excepting those, I will use everything. I have vowed to myself that I will throw nothing away unused.

There will be a time when all of my less-than-perfect stock is used up, and then I will just use the products I like. But for now, this is the best I can do from an environmental point of view. It may not be ideal but I must get used to it. This is my new, adjusted way of living by my long-held values.

Somewhere along the road...

Finally, the end is in sight. The end of my recovery, that is. I'm somewhere along the road at which recovery ends and the return to normal life begins. It's not been easy.

I had a rather prolonged initial recovery time, a pretty wretched time in fact as I was in hospital for three days longer than planned and I was re-admitted 10 days later with complications. And I still have a few minor problems remaining, in particular my wound, which still hasn't healed fully. Until it heals, I dare not do any exercise other than walking and my walks are pretty short. I daren't throw my leg over a bike for fear of opening up that wound again. So in my plentiful spare time I have been testing out some of the products which are now a part of my life. 

I have added a page at the top entitled "Product Reviews", which sounds a whole lot more formal than it is. After all, I'm just one woman and my testing is a long way from scientific! But for any help it may give to anyone else, I thought I would commit to paper the results of the testing I have done. 

In about three weeks, my husband is organising a group of friends on a weekend of mountain biking around Rhayader. I will be going along and, although I won't be taking part, I intend to take a bike (the one in the picture below). I will be ten weeks post-surgery and I hope to be able to ride, just a little bit, because on present projections, my wound will have healed. There are some flat cycle paths and maybe I can slowly and painfully ride a handful of miles. And I'll have no clothes crises, as MTB clothes leave much more room for modesty than road cycling clothes. I'll be wearing baggy MTB shorts or even a skirt!