Ride London 2018

On July 29th 2018 I took part in The Prudential Ride London-Surrey 100 mile cycle ride. Rob, Chris and I were supported by my parents, sister and brother-in-law in London and through prayers and messages of support from others. We completed the 100 miles in 5 hours 52 minutes moving time (official time of 6 hours 37min due to stoppages for Rob’s eyes, Chris’ bladder and my stoma bag).

The weather was horrendous and we were all soaked to the skin by 25 miles. At 48 miles I was ready to pack it in as I was so cold and dispirited, I had pain in my right leg with every pedal stroke and we were only half way (the titanium in my leg from 2012 had become cold).

However our sprits rose as we hit the hills enabling us to warm up (I later learnt that at 50 miles my church stood and prayed for us – thank you Light and Life Church – St Austell). As we rode passed others who were used to flatter terrain (quite a lot sped back passed us in rather dangerous conditions only for us to catch them back up on the next hill) the more fun we had as the three of us worked together.

After 85 miles of pain, the rain stopped and we took off our rain jackets revealing purple jerseys of Crohn’s and Colitis UK. We then rode into the centre of London as a purple train. All of a sudden we were on The Mall and finished. Just after the line we stopped to take in the atmosphere.

It’s was an amazing day which was made even better by the amount of money raised for Crohn’s & Colitis UK. At this moment in time, as a team we have raised £2,772.08 and are now aiming to break the £3000 barrier in the next few weeks. Thank you to all who have donated.

If you haven’t and would like to please visit our just giving page at http://www.justgiving.com/fundraising/titanium-legs

Instagram

I have enjoyed blogging about my life and health over the last year or so. However, one thing I am lacking is engagement with others in the ostomy world. Therefore, I have made the decision to move over onto Instagram. I won’t be shutting my blog and I may write occasional blogs, but my main focus will be shorter posts engaging with others in the ostomy world.

I made a start a few weeks ago and have already gained a few followers whilst engaging with others sharing experiences and advice.

Please find me at titanium_stoma and continue to follow my journey with Stuart the Stoma.

With less than a month before Ride London-Surrey 100, plans are being made for the big day, sponsorship is being pushed for and I have now ridden 1000 miles this year.

This month’s 203 miles took me to exactly 1000 for the year so far and I’m now looking at resting up before the big day. I say resting up, but that will include taking part in the cycling part of a sprint triathlon (which is a hill climb x3), cycling with the children at school as part of a ‘purple day’ to raise money and awareness as well as continuing to commute 3 days a week. However, in all seriousness, I think my body does need rest, especially in this heat.

I’ve always been proud of my Coloplast stoma bags: they look good, have a decent filter and have a good adhesive, but recently this is not the case. I have been experiencing regular leaks with the adhesive falling away from my skin. The last straw was after I organised a big Cornish ride with the ‘Titanium Legs’ boys and 2 good friends.

We met up on the south coast before heading up to Tintagel via Wadebridge for a coffee.

After lunch I headed to the toilet to ensure I was ready for the return journey. This was when I realised, to my horror, that my bag had started to detach from my skin…

Thinking of a short term solution I went to the owner of the cafe and asked for his 1st aid kit. After explaining my situation, they gave me a few plasters and I tried to do a quick bodge job. Luckily, this held up until the 3rd stop and then back home.

After this, I decided that a change was needed. After searching around, a few bodybuilders recommend I try the brand Hollister. Although the bags are not as nice to look at, their plaster like baseplate is said to be more effective in the heat and exercise.

I therefore requested a sample set of 2 piece bags and baseplates and after speaking to the helpful Jackie on their samples line, I am going to have a longer term trial to see if this is the bag for me.

The sponsorship total is slowly creeping up, please help me out in raising money for Crohn’s and Colitis UK who helped me understand what was happening to my body after my diagnosis of Ulcerative Colitis in May 2016. Please visit my just giving page below.

http://www.justgiving.com/fundraising/titanium-legs

May is over and June has officially begun. That might sound like an obvious statement, but it means that the days are ticking away before the Prudential Ride London-Surrey 2018. I haven’t been counting down before now, as my main focus has been to get to the end of half term with as many mile under my belt, but it is now 55 days away. I’ve now done over 800 miles in 2018, some people might not think twice at that statistic. Three of my close friends have done 2,582 miles, 1,497 miles and 3,258 miles respectively. However, to put that in perspective, I’ve now done more miles this year than the last 2 years put together (322 miles – 2016 & 385 miles – 2017), so I am rather happy. This month I’ve added another 217 miles to my total bringing me up to 805 miles for the year so far.

Sponsorship

Of course, this journey is not just about racking up the miles. It is about raising awareness and funds for a charity who have always been there with the information and research I needed since being diagnosed with uceraltive colitis. When I was diagnosed my wife and I didn’t know where to turn, but the information Crohn’s and Colitis UK provided helped massively with diet, drugs and expectations. They were also there when my bowel gave up and I had my a ileostomy operation.

Without this charity I know that my health would have been in decline so much faster. My wife and I had a clear out of all the information and leaflets I was given after my diagnosis and Crohn’s and Colitis UK logo was present on pretty much every piece of paper.

Please help me and my team raise as much money as possible for this amazing charity by visiting our just giving page. We are over 30% towards our target, please help us get closer by donating.

http://www.justgiving.com/titanium-legs?utm_id=121
REST NEEDED

An important part of having a stoma is listening to your body. I constantly have to be looking after my body and ensuring I’m not putting it under too much strain. As a teacher, I’m on my feet pretty much all day and some days I have to ensure I stop for lunch (the alarm on my watch goes off everyday at 12:30 to make sure I do so!) That means when I get to the holidays I need to make sure I stop and relax, mentally as well as physically. This usually means heading out on a gentle ride to clear my head (something I definitely need when writing reports and completing data), but this last week has been different.

In the last week of term, I was really struggling to keep my energy levels high enough to teach, so the 1st part of my life I cut out was the cycling. My body needed physical rest, so that is what I gave it. Duncan down at my local bike shop summed it up when he said rest is important as training when your are aiming to improve. Therefore, I listened to my body and gave it the rest it needed.

It was interesting to note, that as my body got more and more run down, the more problems I got with my stoma bag sticking to my skin. Earlier in the year, I had a really good run without getting any leaks, but in the last 2 weeks I have had to change my bag regularly in the night as the flange (the part that sticks to my skin) has become unstuck as I’ve been sleeping. Not an ideal situation, but one which seems to be slowly improving as my energy levels return to normal.

The stigma of having a bag

One of the main reasons why I write this blog is to raise awareness of Crohns and Colitis as well as showing that having an ileostomy and a stoma bag is not the ‘end of the road’ for having a good life – it is actually the opposite.

It is always interesting people’s responses when I tell people about my bag. I majority of the time, there is a brief look of surprise and maybe a question or two asking what I can and can’t do. However occasionally, I do get a negative response and feel the stigma of having a bag. This blog helps me demonstrate that there is not much I can’t do (other than eat sweetcorn and peas), and that sometimes there will be problems or worries. One example is that I’m 75% likely to get a hernia at some point in my life, so need to ensure I’m not doing any heavy lifting. Another, more light hearted situation, was when I went away for a couple of nights with friends and woke in the middle of the night thinking my stoma was bleeding, but then remembered I had eaten beetroot that evening and the subsequent side affect was my output being blood red.

People shouldn’t judge before getting the full facts and learn that comments like “Eww, you mean you have that for life!” do not help and will never help. Children are probably the best examples of how to react to finding someone has a stoma bag. One young girl at church noticed my bag asking what it was, I told her my digestive system doesn’t work properly so my poo goes into my bag. Her response: “Ok, do you want to see my new water bottle?” Complete acceptance, I have a bag for life, she has a cool water bottle.

In last month’s blog, I wrote a lot about my mileage on the bike, or rather the lack of it. March was not a good month for getting in the miles cycling and it only became clear to me how that had affected me when I wrote it down. All in all, last month’s blog was rather negative, on a downer. So hopefully this month you will feel the positive vibes…

However, the month started on a bit of a downer regarding my stoma. As I was able to increase my cycling Stuart the Stoma was getting increasingly bruised and sore. After an emergency appointment at the hospital, it was decided that it was probably down to wearing tight cycling tops and this was causing abrasions. I am glad to say that it didn’t last too long and when I ditched the baselayers, Stuart became healthy once again.

To start off with, April’s weather was so much improved. I was born in the summer and it is 100% my favourite time of the year. Winter brings the wet and windy weather and I definitely thrive in warmer times. Therefore, when April brought the sun, it also brought a smile to my face.

At 236.5 miles I more than doubled the distance on the bike in March. This brought my total for the year so far up to nearly 600 miles.

Now, with my mileage I do find events help, especially when I’m with friends. In April I managed 2 events: 1 sportive on my road bike and 1 pedal car race. The first event was the New Forest Spring Sportive, Epic route. At ‘only’ 81miles, I don’t think it lived up to the name of ‘Epic’, however I did have an epic time.

4 of us met up in Ringwood the night before to plan a strategy for the ride. It was going to be the first time all 4 of us had ridden together and the one rule we had was to stick together. Over the course of the day we would do over 90 miles as we were going to cycle to the start and then back home at the end too. Our first port of call however, was my bike. In the run up to the sportive I’ve gone on a few shorter rides, all seemed fine until a ride with Dan. We were heading out of town when a creaking noise developed. At first we thought it was his cables, but no, it was definitely coming from my bike. After pulling over a few times to check different parts, we just rode and every time I pedalled a squeal would omit from the bottom bracket.

Therefore our first task as a team was to try and fix my bike, a rather risky thing to do the night before an event, but it needed to be done. There was definitely a joke to be had. How many blokes does it take to change a bike’s bottom bracket – there were 5 of us around 1 bike. After a couple of attempts to smooth the bearings, we swapped the non-drive side crank with one from a spare bike and soon the cranks were spinning silky smooth. All was ready for the morning.

The morning brought damp and foggy conditions. It stayed like that for the first 50 or so miles, until the sun burst through and all the layers came off. Finally, we were able to cycle in our Crohn’s and Colitis UK tops as 3 of us are cycling Ride London-Surrey. It felt great to be riding together and the last part of the ride flew by.

At the end of the ride we chilled out and chatted in the sun. An ‘Epic’ day indeed.

The next challenge for the month was round 2 of the British Pedal Car Championship 2018. I travelled up to Bruntingthorpe Proving Ground in Leicestershire to join Team Apollo. I slotted into their 2nd team. Each car has a team of 4 who rotate round in relay style for 6 hours. On the short track the faster cars were completing laps in less than a minute. Bruntingthorpe is based at an airfield which hosts car auctions as well as being home to various aircraft.

The last time I’d pedalled in September at Blackbushe, I had only managed 2 short stints before a 3rd very short stint before my core had given up and I had been in excruciating pain. This time my core was stronger, but the twisty circuit would put it under pressure. To combat this, I created a support pad out of a foam sleeping mat to cradle me when I sat in the car. After much tinkering and fettling it started to work and I enjoyed a cracking 2nd and 3rd stint. However my 4th stint was much shorter as my core gave up when pushing to keep 2nd place.

In the end Wing Racers were clear runaway winners as the main Apollo car (#1) suffered a huge drive failure. After a massive fight back they overtook our team to finish 2nd, whilst we fought off Royce (#4) to finish on the podium.

Looking ahead to May and with the lighter evenings, rides after work may well be a possibility once again.

March started with a snow day and threw in another halfway through. Snow days down in Cornwall are rare, but they came like buses this year – wait for ages and then 2 came along together.

This cold and wet weather led to more days not commuting than I was comfortable with, but I was in no rush to get ill or have an accident. However, this meant I tried to use the good weather to get out and ride as much as possible and when it snowed, I switched onto the mountain bike.

I am lucky to live in a place which has great road routes to cycle, but I’m also close to the trails. This meant that although the roads were not suitable for riding, the trails felt like a
white adventure playground. Heading up to the sky spur, I was able to look out to sea and take in the views.

I still managed to get in a few days of commuting and a couple of short rides. I only did 114 miles in March, which took my total for 2018 to 358 miles. Although this was less than last month, I have noticed an increase in strength and speed. In tandem to the miles, I have been working on my core strength too. This was a real weakness last year and I struggled when holding myself for long periods of time on the bike. At Blackbushe pedal car race last September, I had to stop with back pain as my core wasn’t strong enough. Therefore, one of my goals of 2018 was to improve my core through a series of exercises in a plan from my best man, who is a fully qualified personal trainer.

Hopefully, we will soon see better weather and I can continue to improve my form ahead of the summer. An 83 mile sportive in the New Forest as well as a return to pedal car racing up in Bruntingthorpe should help me clock up the miles in April helping my endurance. These should also bring some intense and prolonged efforts to further improve my speed.

Milage so far this year

January – 112 miles. Total – 112 miles.
February – 132 miles. Total – 244 miles.
March – 114 miles. Total – 358 miles.

On a different subject, my mum has been busy again. As well as making me an item of clothing I’ll share next month, she made me a matching bag cover. This incorporates one of my favourite TV and film series: Marvel. This bright and colourful bag really shows my character and I’m looking forward to wearing it in the next few days.

Me cresting one of the final hills of the day

2nd month of training done and feeling much fitter than at the end of January.

I did 112 miles last month. I’m up slightly on that this month, February’s total is 132 miles. This takes me up to 244 miles for the year so far.

January – February Mileage

This mileage was helped by a visit from Chris and a 40 mile ride out to Strong Adolfos Cafe at Hawksfield, Wadebridge (for an amazing sandwich, coffee and cake) followed by a short ride the next day before church cut short due to hail.

Lunch at Wadebridge

The ride over to Wadebridge was lovely. The sun was shining, hills were rolling and I was keeping my energy levels up with regular eating (malt loaf). However, just before stopping for lunch we had to cross the camel valley. To cross we turned into the bridge and the side winds hit. As I dropped my chain, I had to stop. The wind was so powerful that Chris did not hear me when I called to him and I had to walk as I couldn’t get back on my bike without being blown over.

However by the end of February, getting on the bike was getting harder due to the weather. The freezing temperatures meant it was too much of a risk to be commuting and I had to use the indoor spin bike instead. As good as the spin bike is, I much prefer riding outside.

This month has also been a month of change with my stoma equipment. At the start of the month my supplier (SALTs Medilink) allowed me to use 2 piece bags alongside the 1 piece system I currently use. I also moved over to a new seal.

The 2 piece system allowed me to swap the bags without having to deattach and reattach to my skin. Perfect for running as I could use a smaller bag and on the bike I could turn the angle of the bag by 90° to create a more comfortable fit under my cycling shorts and jersey.

Although, the seals were not a success and leaks started to happen. This wasn’t a big deal at the start as it was only for a cm under the flange, but the leaks did cause soreness and irritation. Therefore, I have now gone back to Hollister as their seals were not leaking.

I look forward to a productive March as I build up to the 1st sportive of the year in mid-April. Hopefully it will get warmer and the roads will stay clear of snow.

In terms of sponsorship we are now at 15% of our target of £2000. If you haven’t yet donated, please head to http://www.justgiving.com/titanium-legs?utm_id=121 and read my story.

Today is the 1st of February 2018 and so my first month of training is complete.

Getting back on the bike has made me realise how unfit I am in reality compared to where I thought I was. I had visions of getting back on the bike after a break over Christmas and having my spinning technique allow me to float up climbs – it was all in my head.

Fitting in regular commutes 3 days a week has been easily achieved (most of the time) with it being only 2.5 miles in each direction, it should be easily less than 20 minutes each way. However, heading to work is 75% downhill (this does mean I don’t arrive all sweaty), but the commute home is more difficult with a variety of climbs. All short, but some steeper than others. On the Tuesday, fresh at the start of the week, these climbs are easy and taken with enthusiasm, sometimes I even add an extra loop in for fun. The opposite is true of a Thursday evening. By this point in the week my body is tired from teaching everyday and often the result is a slow crawl up any incline.

On the days I don’t commute, I try to do a 30 minute session on the spin bike in the study to ensure my technique continues to improve (although on a Friday, usually a beer takes priority).

At the weekends, I have now managed 2 rides of 20 miles each. This is only 1/5 of the distance I’ll need to cover for Ride London, but I’ll build this up over the coming months.

I already have signed up for a sportive with Chris, Rob and Phil for mid-April and a few longer rides together are planned before that, so not all bad news (it’s probably mostly in my head).

Year to date is already over 112 miles with nearly 8 hours in the saddle.

To help me enthuse myself (and because I needed a new pair) I purchased myself some new cycling shoes. I got a pair of Shimano XC7 mountain biking shoes. These have a different base to the slippery carbon on my road shoes as they are for off road cycling. Michelin rubber gives them good grip for walking.

Now you may be thinking why I would need grip on my shoes whilst doing a road cycle. Well here comes my answer…

As I learn more about Ride London, the more I realise I will be walking around quite a bit. Rather than ruin my (rather nice) Pearl Izumi road cycle shoes, I am going to ride on a pair of shoes designed for cyclo-cross (if you’ve never seen cyclo-cross you are missing out. It’s off road racing on a road bike with slightly knobbly tyres. Great fun to watch!). These shoes are stiff with a carbon base, but they have the Michelin rubber for grip – as well as a boa dial closure system. Joined together with a pair of Shimano pedals they work as well as, if not better, than my current shoe and pedal combination.

We have now raised 10% of our goal for Crohn’s and Colitis UK, thank you to all our supporters so far, if you haven’t yet, please visit my just giving page and support us.

http://www.justgiving.com/titanium-legs?utm_id=121

Recently I requested some new stoma bags. After a small trial of using 2 piece bags in the summer, it thought I’d try out using the system over a longer period, however I wanted a set up which was different to other people.

A 1 piece bag sticks to the skin with a hole at the top for the stoma. You can empty the bag via the tabs at the bottom, but if you want to change the bag (usually after a shower or two the filter stops working properly) you have to remove it from the skin, clean the stoma and then put on a new bag. This somewhat irritates the skin each time you reapply a bag.

A standard 1 piece bag.

In contrast a 2 piece system consists of a ‘flange base plate’ which sits around the stoma and then the bag connects to the base plate. This can be done in a variety of ways, however in the summer I found the ‘Click’ system from Coloplast to be the most secure and trustworthy, so have gone with them – this also allows me to keep the same make and size of bag as usual. The base plate can stay on your skin whilst you swap to new, fresh bags (whilst giving the stoma a little clean in between swapping).

The baseplate

2 different sized bags.

The specific set up I was interested in though was the ability to have 2 different sizes of bags. My usual size (Coloplast Maxi) for every day use and then a smaller one (Coloplast midi) for sports.

I’ve just changed my bag for the 3rd time with the same baseplate. I’ve used both sizes and all seems to be going well so far. It will be interesting to see how things progress and whether I go back to the 1 piece system or stay with the 2 piece bags.

A new year, a new challenge. In the autumn I was looking for a challenge, a challenge that would allow me to give back to a charity who had supported me and then an opportunity arose – The Prudential Ride London-Surrey 100.

Ride London-Surrey 100 is a 100 mile cycle sportive around London and Surrey. One of the key parts to making this a special sportive is the fact it’s held on closed roads. Normal sportives are usually held on public roads where as well as riding with others, you have to be constantly aware of traffic, especially when overtaking riders and riding in groups. The ability to ride on closed roads means riding like it’s a race and an experience I have dreamed of. Rob and I have talked about doing this in the past, but never really thought it would be a possibility. However, this was until I saw Crohn’s and Colitis UK had charity places.

After some discussions with my wife, I signed up pledging to raise money for a great cause and trying to work out how to get my fitness up to cycling 100 miles in a day. I have 2 close friends joining me: Rob and Chris. Rob is another teacher from the 1st school I worked in, he is a great guy whose friendship is invaluable. He repeatedly visited me in hospital and then again when I was at home. He is a fab friend and we often catch up over on a ride or over coffee, or both. Chris is someone I have known for years, I have raced against him, with him, cycled alongside him in mega rides around Devon and he was an usher at my wedding. He is always there at the end of the phone and someone who I can always rely on to give a calm and calculated opinion. My first long ride after surgery was with him, so it was a no brainer to have him join me.

Crohn’s and Colitis UK are the UK’s leading charity on raising the awareness of Crohn’s and Colitis, supporting those who have been diagnosed, or on their way to a diagnosis, stand up for the rights of sufferers as well as funding important research.

After I was diagnosed, I didn’t know where to turn. Crohn’s and Colitis UK provided key information on what ulcerative colitis was and how it affected me. They pointed me in the direction of good advice regarding nutrition and diet to improve my symptoms. Clearly explained the medication I was taking and possible side affects, as well as laying out alternative options.

So I now am asking for help to raise as much money as possible for this amazing charity. I have set up a just giving page to raise funds for my team: Titanium Legs and we are aiming to raise over £2000. Please support us by donating to this great charity.

http://www.justgiving.com/titanium-legs?utm_id=121

When I started writing this blog it was Stuart’s birthday (yes, I’ve named my stoma Stuart), 12 months to the day since I had surgery to remove roughly 2kg of a badly functioning organ. It is now 13 months as October was an extremely busy month – and so is November at the moment.

So the fact that it is one year on, has got me reflecting pretty much constantly (this hasn’t helped my sleeping patterns, which are erratic at best). I think back to May 2016 and just remember pain. It was full on!

To tell you what I’ve been through, it started on Good Friday, 2016: blood in the toliet; confusion; more blood in the toilet; worry; misdiagnosis of piles, wrong medication; more and more blood; feeling weak; camera up my bottom; correct diagnosis; oral steroids; pain; weakness; rushing to the toilet 10+ times a day; hospital admission; IV steroids; more cameras; mood swings from steroids; Humeria injections; less blood in stools; return to work; blood tests; hospital readmission; more IV steroids; blood tests; prepped for surgery; surgery cancelled; different surgeon assigned; surgery completed – Stuart is created; home; Stuart not working; dehydration, unbearable cramp in legs, arms & hands; hospital readmission; IV drips; Stuart starts working (hooray); weight at 57kg (for someone 6ft that’s not great); home again; putting weight on; eating lots; eating some more; cycle rides (very gently and slowly); phased return to work; full time teaching; cycling to work; residential trip; lose voice; summer holidays; voice partly comes back; races pedalcars; term starts again…

If you are still reading then you have just read my life in the last year and a half. It has been quite some year. I like to think that I look after my body quite well, whilst pushing it to get stronger at the same time. Sometimes that goes hand in hand, sometimes it doesn’t. One thing which is completely destroyed by having surgery is core strength.

Balance is something I’ve always taken for granted. Since I can remember I’ve either been on a bike, skateboard, scooter or inline skates. One event from when I was young, which I can remember clearly, is being pushed on my bike by my dad along the pavement when I was about 3 or 4. He would start at walking pace before going into slight jog, finally a sprint would happen with a strong final push. My little legs would be spinning round and round, but I loved the rush that came with speed. Looking back on it now, maybe that was one of the moments which led to me becoming the keen cyclist I am today. Even after my car accident in 2012 (I broke my left leg, hip and was placed into an induced coma for 10 days. I now have titanium in my right leg, hence ‘A Titanium Stoma’) the first thing I aimed for was to get back on my bike. My first ride with my good friend Chris was slow and steady, but my balance was there from the off.

“Titanium Strong” something I have in common with Bloodhound SSC.

When the IBD nurses – who are amazing btw – told me I was going to have surgery I was mentally broken. Sat on my own in A&E my first thought was that I would never cycle again. Well thank goodness for the internet and world of blogging. I’d soon found 3 blogs which explained that cycling with a bag can be done and 2 blogs were of competitive roadies! On reflection they did mention the issue of core.

I dismissed it at the time, I was a fit young man, getting core strength wouldn’t be a problem. Yet that is what I’m struggling with. Not ill-fitting bags, not leakages (touch wood!), not runny output or blockages, but core strength.

I now feel I (partly) understand how a lady’s body is affected after having a C-SECTION. I mean I didn’t have a person come out of me that I had carried around for 9 months, but the feeling of core muscles being cut must be similar. I think I can say not being able to sit up independently in bed was a definite low point. I felt so helpless, so even though I looked ok (as the unfamiliar night shift nurse thought as she forced me to get up to go to the toilet on my own – that was the one and only moan I can have at Treliske btw. In every other moment of care they were amazing – even when they were repeatedly sticking a camera up my bottom!). After getting home, improvements started happening, but it was so slow and frustrating.

I’m so scared of getting a hernia it’s unreal. This prevents me from doing true strength workouts, however luckily my best man Simon is a trained personal trainer and has developed a rough plan to help me. As the weeks and months go by, hopefully my core strength will return. I’ll let you know how I get on.

My current torso with a support band and without.