Our local branch of the Ileostomy Association (or Ileostomy and Internal Pouch Support Group, as it is now officially known, but what a mouthful! – so I usually just call it the Ileostomy Association) celebrated the 60th anniversary of the Association today, in the village hall at Creech St. Michael, near Taunton. This is further afield than I usually travel for meetings because it’s a bit hard on my hubby who has to drive me there, but he agreed to take me as it was an important meeting, and also, as part of the anniversary celebrations, they were having a cake baking competition and as those who know me will understand, I can never miss out on any opportunity where CAKE is involved!
He took himself off for the day and found some interesting things to do.
Around the hall were set up various tables, such as the display of raffle prizes, and the exchange table shown here.
On the exchange table, people could leave supplies that they no longer needed, and we could take what we wanted – they always have this table at meetings, and it’s a useful way of getting hold of extra supplies or trying out something new – a lot of what is left are samples from various companies. I picked up a nice little bag to keep supplies in, and some wet wipes and a few other bits and pieces, and left a few support garments that I had which did not suit my needs and were just taking up space – far better for someone else to have them and make use of them.
There were various companies represented, too, setting up their samples and supplies on the other tables around the room – for me this is always a good opportunity for stocking up on free biros, note pads and other stuff! Today, one lady was getting advice from the Coloplast representative about the Sensura Mio bags that I use, and I was able to tell her how great they are. Also, for the first time for me at any of these sorts of meetings, I was delighted to find a rep from Patient Choice, the supply company I use, and I had a lovely chat with this gentleman, and I told him how pleased I was with their service, and mentioned several staff members by name, whom he knew. They are a small concern but it does mean you get to know everyone, and they know you too, and when I phone through with my orders, we always have a friendly chat. This gentleman today, called Neil, asked if he could take a photo of me to show them in the office, because they like to put a face to the names of their customers! I thought this was very nice.
The committee siting at the top table. Kate, our chairman, is third from the left. She is brilliant and does an excellent job – very efficient, but also very friendly, cheerful and fun.
We had an early buffet lunch, followed by the committee meeting, after which our guest speaker was introduced. She was Caroline Bramwell, ironman triathlete and ileostomate. Her story is truly inspirational! You can see it here: http://www.ironostomy.co.uk/
She runs a business making concentrated nutrition bars known as Gutsy Bars (http://gutsybars.co.uk/index.html). She brought along some samples for us to try. Full of natural ingredients, in a formulation suitable for ostomates and non-ostomates alike, the ideal fuel for athletes!
In this slide, she is receiving the NatWest Venus Inspirational Woman award in 2014.
The next slide shows what the Ironman Triathlon entails. Beyond the capability of many 100% fit and healthy individuals, let alone someone who suffered from ulcerative colitis and ended up with a permanent ileostomy!
She developed ulcerative colitis when she was pregnant. She could not have a colonoscopy until she passed the six-month mark of her pregnancy because of possible damage to the baby; being pregnant, she could not take steroids for the colitis, until after her daughter was born, a breech baby, necessitating a caesarean section.
Before her surgery she described herself as a couch potato, blown up by medication and depressed; she looks back on her photo taken immediately before as a gauge of just how far she has come today.
Seven years ago, she underwent a revolutionary keyhole surgery technique, through a single site – she was the first patient to undergo this operation. The hole was used to form the stoma, resulting in no other abdominal scarring.
After her surgery, she determined to get fit, and began with cycling, and soon became hooked, and took part in some major cycling events. She then learnt to swim in 2013, in order to keep up with her children, and became as good at it as she was with her cycling, and decided to take up running as well, in order to fulfil her dream of becoming a triathlete.
In her first triathlon event, the North Devon Triathletes’ Club triathlon in March 2014, she came in twenty minutes after the second-to-last competitor, and this was only a 5 kilometre event! She has since improved considerably. North Devon is a hard place to do it, too, because it is very hilly.
The ironman triathlon is the toughest of all – Wikipedia describes it thus: “An Ironman Triathlon is one of a series of long-distance triathlon races organized by the World Triathlon Corporation (WTC), consisting of a 2.4-mile (3.86 km) swim, a 112-mile (180.25 km) bicycle ride and a marathon 26.22-mile (42.20 km) run, raced in that order and without a break. It is widely considered one of the most difficult one-day sporting events in the world.” It takes 17 hours.
Caroline showed us her kit, beginning with her tri suit, a skin-tight one-piece lycra suit.
Being so close-fitting, she said that of course, her stoma bag could hardly remain invisible – but she didn’t worry about that, and anyway people didn’t seem to notice. She described how once, after a swim in open seawater, there was a ring of salt over the flange of her bag! Nobody seemed bothered. Everyone in her club knows she has a stoma anyway.
She also showed her wetsuit used for the swimming, and explained that you need some lubrication on the legs to enable you to pull this off in double quick time to be ready to jump on your bike for the next stage! You are not allowed any outside help for the transitions.
She explained that after swimming, cycling and running, the fourth discipline in the triathlon is the two transitions – there are strict rules about when you are allowed to change etc., and you have to be extremely quick about it in order not to lose precious time.
Next she showed us her racing bike. I was fascinated by all this, having recently watched the Olympics and Paralympics avidly, and the cycling is one of my favourite sports to watch, especially in the velodrome, but I was so impressed with the triathletes, that they could excel at not just one, but three different sports. I had never seen a racing cycle close up, and after her talk was finished, we were able to examine it at close quarters, and feel its weight – very light, as many of the elements are made of ultra-light carbon fibre.
She explained some of the additional problems she has, being an ostomate – for example when bent over, using the aero bars – see below:
this puts a lot of pressure on one’s core, and one is a lot more aware of the presence of the ostomy bag. She has to drink half as much fluid again as “normal” athletes and adds electrolytes to her water bottles. She also carries extra stoma supplies in case of emergencies.
She explained a little about the sort of training she does, including exercises for strengthening her core, and the ones she needs to avoid with a stoma, because of the risk of injury and hernia.
Next came the cycling shoes, with their rigid carbon soles, and special clips to attach them to the pedals.
All this equipment is very expensive. One of her sponsors is Trio Healthcare – I use several of their products. On her table today, where she was sharing samples of her energy bars, she also had a small display of her sponsor’s products, and we agreed how good they are.
When running, she carries a bum bag with spare stoma supplies. She said that the hardest part of the triathlon was beginning to run after finishing the cycling – this involved the use of different leg muscles, and for the first mile or two of the run, her legs are painful and feel like jelly.
Look at what motivates Caroline:
How inspirational is that?!
She showed us some maps of some of the events in which she has participated:
What a truly exceptional person. She is also warm and friendly and fun, a mother and full-time businesswoman, and somehow manages to put in all the necessary training for this incredibly gruelling sport, and also fits in public speaking engagements! Phew.
In the question time after her talk, I asked if we could expect to see her in Tokyo 2020 and she replied that she was too old!!
Then came a presentation, of a giant cheque for £400 which the Devon and Somerset IA had raised for RD&E (Royal Devon and Exeter Hospital), being accepted by one of their stoma nurses.
This money was to pay for a training torso, which she proceeded to demonstrate for us.
It has three small holes in its “abdomen” into which can be plugged various types of stoma. This is for training purposes, for both professionals (stoma nurses etc.) and patients and their family members.
When I was preparing for my surgery I was given a small kit consisting of an information booklet and DVD, some sample bags, and a red plastic stick-on stoma to practise with! The stomas that plug into this torso are not rigid plastic, but made of some sort of gel – it felt quite disgusting and not a bit like a real stoma but she said that it was the most realistic when it came to training purposes, not being rigid like the plastic ones, and it gave a more realistic feel when applying the bags.
We all had a bit of a giggle over this hermaphrodite torso, and were trying to think of a suitable name for it!
After the draw, the final event of the day was the judging of the cake competition.
I had hoped that there would be more entries than there were. Not very many cakes really! The one in the centre was not entered in the competition but was a commercially baked fruitcake onto which someone had piped the IA logo.
You can see my stoma cakes on the right hand side of the picture!
Here they are after I had baked them this week.
As anticipated, I didn’t win the competition, but they did cause some amusement! (Apart from one woman who said, “Oh. I don’t think I could eat one of those…” lol!) For me, though, if I could do something that would make people laugh, and see the funny side of having a stoma, that was better than a prize! Although my cakes didn’t win, they got an honourable mention, and a lot of people thought they were great fun!
Here’s the anniversary cake.
I thought this one was pretty good, with the stencilled logo on top, done in icing sugar. Beyond is a Norwegian apple cake which was gluten-free and quite delicious!
Finally we went through the answers to the quiz. They always do a quiz, leaving the typed questions on the tables for us to complete at our leisure during the day. I did very well on the Olympics/Paralympics section but woefully badly on the rest – I’m hopeless at the normal general-knowledge-type questions!
We ended with tea and competition-entry cakes!
Altogether a totally brilliant day, full of interest, and lots of opportunity for chat, and meeting people old and new. I’d really been looking forward to it, and I wasn’t disappointed.