CT Scan–Has Miss Piggy Returned?

Following on from my appointment with the surgeon 2 1/2 weeks ago, I had my CT scan today, at Mount Stuart Hospital in Torquay, to find out whether Miss Piggy, my hernia, has returned. This is a private hospital, but it takes NHS overflow for various procedures. Today the mobile CT scanning unit was in the car park and this is where we went.

The whole thing took a lot shorter time than the scans I’ve had at Torbay Hospital, where you are sitting around for ages, drinking and waiting your turn, and afterwards they like to keep you hanging around for a while longer before removing your cannula in case you exhibit any adverse symptoms from the X-ray dye. Today, though, we sat in the waiting room near the entrance to the hospital and were soon called, and they did the procedure straight away, inserting the cannula into my arm for the dye, and removing it immediately after the scan.

Mr. Pullan, my surgeon, had instructed me to perform the Valsalva manoeuvre in the scanner. Normally, you have to take in a breath and hold it while the scan takes place, but in order to make any hernia more obvious, I was instructed to exhale against my closed glottis in order to produce a strain on my abdomen.

I should have the result of the scan fairly soon – I was told that the report would be made pretty quickly, but there may be a delay in hearing from Mr. Pullan – I don’t know if they will phone, or whether they will call me in for another appointment.

I have been spending the past 2 1/2 weeks hoping the hernia has come back, so that they will go ahead and do the permanent repair in a controlled fashion, so that I am properly prepared and as fit as possible before the operation. The alternative is to wait for the sutured repair, done three months ago, to fail, and this could happen at any time, out of our control, and I am anxious to avoid the possibility of another obstruction, which would put me back in hospital requiring another emergency operation, again most likely performed by a general surgeon who is not qualified to insert the mesh around the stoma. He would again make a sutured repair, and we’d be back to square one again. There is a limited number of times the procedure can be done, and eventually the area would be so weakened that they’d have to relocate the stoma to the other side of my abdomen, which I am very anxious to avoid at all costs.

It’s a weird position to be in, hoping against hope for a hernia! Ah well, my life these days seems to consist of a series of weirdnesses, one way or another! We shall just have to wait and see what the scan reveals.

Appointment with my Surgeon

I saw my original surgeon today. I had been told by the surgeon who did my emergency surgery three months ago, to repair the parastomal hernia that was causing an obstruction, that he was only able to do a temporary repair, and that I would require a further operation to insert some mesh to provide more permanent protection against the hernia recurring.

At today’s appointment, I told him that I had recently been experiencing some pain in the area of Kermit, my stoma, and suspected that the hernia might already have returned. He examined me and the results were inconclusive; he said it did feel rather “loose” but he couldn’t confirm it one way or another. He is booking me in for a CT scan which will show more clearly what is going on.

He said that the surgeon who operated on me didn’t normally do these hernia repairs, and that it would be most unusual to do a pre-emptive repair when there was no actual hernia, because of the risks that all operations incur. I asked whether they just left them to recur before dealing with them, and he said that was the case. I said I certainly didn’t want to have a repeat of my recent experience, having emergency surgery because of a blockage, but he said that wouldn’t necessarily be the case, and that if it did recur, they could repair it.

So we are a bit in limbo now. I had psyched myself up for a definite operation and now this isn’t going to happen, but I am left with a temporary repair that is inevitably going to fail (statistically a sutured repair of a parastomal hernia has a 100 percent failure rate) and we don’t know when that will happen, which is very unsatisfactory. Perhaps we will know more when I have had the scan. I told him I didn’t like the idea of living in this risky situation and really didn’t want to go through another blockage and feeling so ill again.

I whether, if it did have to be done, it would be done by keyhole surgery, and he said no; having already had two major operations in that area (three, actually, if you consider my hysterectomy over 20 years ago) there would be adhesions and it would not be safe to do keyhole surgery. Also, he said that the mesh would need to go in the muscle to do any good, and open surgery would be required for this. He said an alternative would be to re-site the stoma on the other side of my abdomen and I said I really wouldn’t want this; I want minimal interference with Kermit, and anyway, it would be putting me at even more risk of herniation – at the new site, and also at the old site, which would still be weakened. I didn’t want to have a stoma on the left side as I was used to it on the right.

I told him I was having problems getting support garments organised and that I felt really vulnerable. He said we’d get the scan done, and take it from there.

So that was that. No operation on the immediate horizon unless I’ve actually got a hernia, and so far, no support garments either.

After seeing him, I asked to see one of the stoma nurses, so that I could fill her in with the saga of the non-appearance of support garments that actually fit me. She was horrified that I had been waiting nearly 6 months for this to be sorted, and said she would be contacting the company, and phoning the lady who has been doing my home visits to discuss the matter. She was concerned that I had not been able to wear even the one pair of pants that were right, because they kept being sent back to the company to copy (and they keep getting them wrong so they don’t fit). I said that even when I did have them, and was waiting for yet another visit to collect them to copy again, I couldn’t wear them because they had to be clean to be sent off, and anyway, with only one pair, I had no spare to be “in the wash.” I told her I was seeing the lady this afternoon and will keep her informed of developments.

She came mid-afternoon and compared the original pair with the latest set of three which still don’t fit, and took them all away. I asked for this to be dealt with as a matter of urgency, and that a different seamstress be employed to do the work. I said the stoma nurse would be contacting her, and that she had said that they should be writing a letter to the company about this, because if this has happened to me, it is quite likely to be happening to others also. It is not like a normal purchase where a dissatisfied customer can go elsewhere, because it’s a small specialised market, and it would be hard to find another company that does a bespoke service and home visits. She said that the paying customer was the NHS and that shouldn’t make any difference to how individual patients were treated by the company. The stoma clinic has an arrangement with the company and so have regular contact with them, and will take up my cause. This is a relief, because I have felt trapped, frustrated and powerless to sort out the situation, and angered by the cavalier attitude of the seamstress who is responsible and who is not taking responsibility for her mistakes and trying to make out that it’s my fault, and I haven’t known who to contact about it. Someone needs to take responsibility for this because it is putting people’s health at risk. My hubby is convinced that the obstruction in my hernia that landed me in hospital could have been avoided if I had had the garments when I should have done, nearly six months ago, and he’s pretty upset about it. He suggested I inform the stoma nurse about it today, since we were in that department anyway seeing my surgeon, and it seemed a good idea, and I was glad to have the opportunity.

All I want is a satisfactory resolution of these various problems and to have some peace of mind that I am not going to have any further blockages caused by hernias. The last one was a major upheaval in my life and made me very poorly indeed, and took a long time to recover from.

Roll on the scan, and we’ll see what happens after that, and hopefully the correct support garments will be made for me in the very near future, so at least I’ll have some protection.

Kermit’s Second Birthday!

Today it is exactly two years since I had my bowel cancer surgery when my colon was removed and my permanent ileostomy (Kermit) was created. Really I don’t know where the time has gone. Two years!

Unfortunately, in view of my more recent surgery, I have not had the energy or time to hold a birthday party for him. I would like to have invited my two friends whom I met when we were all in hospital together two years ago, and I would like to have made Kermit a birthday cake like I did last year, but it wasn’t to be!

Here’s a picture of the cake I made last year to celebrate Kermit’s first birthday. Hope he enjoys the virtual version this year – I’ll try and do better next year!

What a journey this two years has been. 2015 was a year out of my life really, dealing with the cancer diagnosis and the emotional upheaval as I prepared for surgery (the operation was postponed twice and I was under severe emotional stress for family reasons – thank goodness for my wonderful hubby who saw me through it all!) and then came the physical recovery and adjusting to my new way of life with a stoma. Once I was sufficiently recovered from the operation, I had to undergo 6 months of intensive chemo which really took it out of me, and by the time that was finished, I had the autumn to begin recovering, with my cancer all-clear being given at the end of November. What a rollercoaster! You can read the whole journey on My Cancer Diary on my other blog.

2016 was a good year all round, with my taking up several activities which I had given up several years ago because of ill health, thinking they were part of my past. These include singing and playing the guitar, restarting a Bible study group, and baking! These have all brought me a lot of pleasure, especially the baking! I have been able to keep my art going throughout all this, with periods when my creative mojo disappeared, but it’s always there for me when I am feeling well.

This year I was looking forward to settling back into a normal life – if a different sort of normal from before! However, I had to face emergency surgery at the beginning of February for an intestinal obstruction caused by my parastomal hernia. This has now been temporarily repaired and I face further surgery to create a more permanent solution.

I am very, very happy to have Kermit. Before he came, I was struggling with ulcerative colitis which, although horrible, was probably never going to be bad enough to necessitate a stoma, so I’d have had to put up with it for the rest of my life, with medication. However, when the cancer happened, it turned out to be a blessing in disguise as the whole inflamed colon was removed and for the first time for years, I found myself in control, and once I’d learnt to manage Kermit and his bag, realised that even if it were possible, I’d never go back to how I was before! Kermit has changed my life, no doubt about it.

Anyone facing what I went through, I would say, be encouraged – it’s not nearly as bad as you think. Yes, you have to get through it all – the surgery, the treatment, adjusting to a new way of doing things, but once you are through that process, life is good!

Support for Miss Piggy

When I saw the stoma nurse last week she confirmed my GP’s opinion that I have developed a hernia, which, appearing next to Kermit (my stoma) has been christened Miss Piggy. She agreed that repair is not really an option, and that the way forward is support, and this afternoon a young lady from CUI, a company specialising in support garments for ostomates, came to the house to fit me with something suitable – she was absolutely delightful and we parted with a hug – she is originally from an African country and is petite and quite beautiful, and rejoices in the name of Moreblessing!! I certainly felt blessed by her presence. She was smartly and elegantly dressed, and with her beautiful smile, she was charming and friendly.

The fabric of which CUI’s garments are made is called Fulcionel, which consists of two stretch layers bonded together, forming a strong but flexible material which stretches in all directions. This provides adequate support for a hernia, while at the same time allowing the stoma bag to function properly without the danger of pancaking.

She began by showing me some of their support belts. They have an innovative system for putting them on which consists of a “glove” on the outside of one end – this is like a mitt into which you insert your hand – to get it the right way round, you insert the hand on the same side as your stoma, which in my case would be the right side. You then grasp the other end behind your back and place it over your hip on the opposite side from the stoma, and with your hand in the glove, you pull outwards to stretch the fabric, and then around in front, and place the end over the loops of Velcro of the other end. This system allows you to adjust the amount of support (you can loosen it after a big meal!) and makes putting the belt on, and removing it, very easy indeed. The glove also means that you are not screwing up the belt as you pull it, and it goes around you in an even and unrestricted way.

However, for me, despite the fact that these belts have a slightly tacky anti-roll band at top and bottom, as soon as I sat down, the belt rolled up from my bottom. When I was trying support garments from another company in the past to help prevent a hernia, I found the same problem, and was given some pants, which unfortunately I didn’t get on with, so I stopped wearing them. At that time I wasn’t given such a thorough fitting, and was just given a medium-sized pair, which really weren’t that comfortable Moreblessing (or Moby for short) said that it is worth investing the time and effort into a thorough consultation in order for them to provide a garment that really works for patients, giving them both support and comfort – there is no point in providing something that doesn’t work for an individual, and which just ends up in the drawer not being worn.

She could see that my shape wasn’t right for the belt, so she got out some samples of pants for me to try.

Trying on a medium-sized pair, she could tell by looking at me, and I could feel myself, that the support was good over my abdomen, and it felt firm and comfortable. However, the band at the waist was somewhat slack, and the legs were definitely too tight, cutting in when I sat down. She pinned a small dart at the waist with safety pins and measured how much reduction she had made, which she noted down. However, even trying on a pair which didn’t fit properly, I could immediately feel the benefit of the support over my abdomen.

She said that what I needed was a medium pair with a slightly smaller waist – the waist of a small pair was too tight – and the legs of a large pair. We looked at the option of an opening at the crotch – this is closed with a strip of velcro and there are two tabs at the sides for ease of opening – this means that you can go to the loo easily without having to pull down the pants each time. They are quite tight and a bit of an effort to get on and off, which proves they are doing their job – and the bottom opening certainly seems a good idea, and would make life a lot easier for me. She said that if they add a wider band of velcro loops, there will be room for some adjustment in the leg size, as well as cutting them slightly larger, and this will give me a bit more room for adjustment.

She told me the company has a team of twelve sewing ladies who make up these garments. Examining all the samples she’d brought along, I could see that they were beautifully made and very well finished, and I complimented her on that. The garments are all machine washable at 40 degrees but must be dried naturally without tumble drying, and since this is what I do with our laundry anyway, caring for the garments will be no problem.

The pants come in three colours: white, beige and black, and you can have them with or without lace. Without the lace, they look much more like a medical appliance, and reminded me of my original pair, which I didn’t like. The lace is a large panel across the front, attached along the band at the waist, and down the side seams, but loose across the bottom, with a slight gather to allow for the stretch across the abdomen. The lace extends across the back, attached along the curving seam at the top of the gusset, which has no support. They are therefore very pretty and feminine despite being high-waisted – they need to come up right over the top of the bag to prevent constriction.

I have chosen a beige pair with lace – they look really pretty and not like medical equipment! To start with they will just make up one pair for me, and if I am happy with them after wearing them for a few days, I can order more. I am allowed three pairs in one year on prescription, and I don’t want to waste the prescription by ordering three all at once and then finding that they are no good. They could take up to four weeks to arrive but it should be quicker than that.

Moby took down the details of Patient Choice, my stoma supplies company, and said that the provision of the garments would be through them, as they already have an electronic prescription system in place with my GP, who has told me she is happy to prescribe hernia support garments.

Following my visit to the stoma nurse when she told me I had “textbook skin” and her request for a photo for a training booklet for the staff, someone on the Camp Crappy forum on Inspire said that Kermit would want to make celebrity appearances from now on, in shows like “Dancing with the Stomas,” and “Stoma’s Got Talent” haha!! She added that if Kermit wanted to autograph the book, then things could get a bit messy…

So after this afternoon’s consultation, Kermit and Miss Piggy, and of course Shoshi, will soon be very happy and comfortable! It was a great appointment with a very charming young lady who told me she loves her job, which showed – she was enthusiastic and thorough, and a pleasure to deal with. I am very impressed with CUI and their thoroughness and efficiency and care, which will result in a bespoke garment which will make life a lot more comfortable for me, and prevent further problems with the hernia which is unfortunately here to stay. I cannot thank them enough.

Stoma Nurse Appointment

This morning I had an appointment at the hospital with the stoma nurse. This time I saw Nita, one of the senior nurses, who had helped us so much in the early days before and after my surgery. She is so kind, helpful, friendly and efficient!

She said it was a good idea to keep an eye on me periodically, although I am doing so well and no longer need regular scheduled appointments. I told her the GP had diagnosed a hernia, and as soon as she looked at me on the examination couch, she confirmed this and said it was clearly visible.

We took Kermit’s bag off, and her first reaction was, “You’ve got textbook skin! Whatever you are doing, keep on doing it!” This was very encouraging!

She asked what I was using, and we got Kermit’s handbag out and spread out the stuff – adhesive removers, barrier wipes, etc. She was interested that I was using Trio flange extenders – she asked how I liked them, and I told her they were the best – so thin and flexible, and almost invisible once in place. She said that in the clinic they hadn’t been terribly impressed with Trio but I had to disagree and said I absolutely loved their stuff. She could see that my whole kit was clearly working well for me.

She asked if I’d be prepared to come in again if she called me, because they were preparing some kind of booklet about stoma care (for training purposes, I think) and they were hoping to have a series of photographs showing how bad/good skin could be, and my skin around Kermit was so good that we’d be used for the example of the best skin! So Kermit is going to be famous. When I told them on Camp Crappy (the stoma forum on Inspire) I had some very amusing replies about this, saying that if Kermit was asked to autograph the book, things might get a bit messy! Someone suggested that he could seek fame in other directions, for example “Maybe future gigs at stoma conventions, or guest appearances on Stomas Got Talent and Dancing With The Stomas?” Ha ha! I just hope all this fame doesn’t go to Kermit’s head.

We spoke a bit about Miss Piggy, and when I told her the hernia was Kermit’s new friend and was called Miss Piggy, she said, “That’s hilarious!” I said that the GP had agreed with me that the problem may have been caused by, or at least exacerbated by, the fact that I have to strain every time I pee, because of the nerve damage to my bladder from the chemo – I told her I was still retaining up to 20 percent which has to be forced out. She agreed with the GP’s assessment that there was less risk to my health in managing Miss Piggy with support, rather than going down the route of self-catheterisation with its high risk of infection. These things are a balancing act, and choosing the path of least risk. She said that Miss Piggy shouldn’t present me with too much of a problem and that adequate support was the way to go.

We moved on to talk about support in more detail. I told her the GP was happy to prescribe whatever support garments I needed, and she agreed – she also agreed with what one of her colleagues had said some time ago, that I could go online and approach the company myself – I said this would save them time and work. I said that I had already contacted CUI and that they would be phoning me with an appointment for someone to call at our home to measure and fit me properly. She said that at present the local rep was off sick, and that someone was having to come down from London, which meant that she needed to collect enough appointments to make the trip worthwhile, and she’d find somewhere to stay for a few days while she got round to everyone, so I may have to wait a bit longer than usual.

She said that they now had an arrangement with this company, CUI, and had regular clinics with their rep there at the hospital. My hubby said wouldn’t it be easier for me to come in to be seen, but Nita said it was fine for them to do it at home. I think this is better – it saves us the hassle of going out, and it also frees up their appointment slots for others, who may need additional support from the staff on hand in the clinic. Nita agreed.

As we left, Nita said it was so nice to see us guys again, and wished us well. I came away feeling very well cared for and affirmed.

Only occasional pain from Miss Piggy, and I am trying to be careful when coughing, lifting, etc.

Hernia

Today I saw my GP because I’ve been suffering all week with gastro-enteritis, and I was also concerned about the level of pain in the area around Kermit. The GP also wanted to discuss with us the blood clots they’d found on my lungs on my recent CT scan, and I’ve now been put on anticoagulants for that. She examined me, and said that there was a slight hernia to one side of Kermit.

This is a major bore. I really had hoped I’d avoid developing a parastomal hernia, but given how common they are with ostomates – after all, the adominal wall is compromised by cutting a hole in it to form the stoma – it isn’t really very surprising, I suppose. However, my surgery was only 18 months ago and I had hoped to escape for a little longer than that!

I am hoping to see the stoma nurse again next week and no doubt she will confirm what the doctor said.

The doctor said it wasn’t large, and not too serious, and nothing needed to be done. I am aware than surgical repair of parastomal hernias is notoriously unsuccessful and the hernia almost inevitably comes back; there is always a risk with surgery, too, and every time they open you up, you are likely to form more adhesions which can lead to trouble, so it’s best left well alone if possible!

I am hoping to explore further the whole subject of support garments. The pants that the Suportex lady provided for me through the stoma clinic were not very nice and I’ve stopped wearing them. There are other companies, and many of them are prepared to come out to you at home and give you an individual consultation and measure you etc. Meanwhile, I am wearing so-called “support” underwear from regular retail shops but they offer very little real support. They do keep Kermit’s bag in place, and smooth things out nicely so that you don’t get so many obvious lumps and bumps showing on the outside!

I have been wearing these in the hope of preventing a hernia, but now that it has happened, I think it is worth looking into proper support garments for ostomates again, and seeing what they can come up with. You can do it all on line, and you can get a certain number each year free of prescription.

Poor Kermit. He hasn’t been feeling well all week! His output has been very runny (equivalent of diarrhoea) with the gastro-enteritis, but over the past couple of days there hasn’t been much, simply because I’ve hardly been eating anything. I probably haven’t been drinking enough, and really didn’t feel like it anyway, but the GP reminded me how important it is, especially for ileostomates, to keep their levels of hydration and electrolytes topped up – a bout of gastro-enteritis could lead to severe dehydration in an alarmingly short space of time. This morning I made up a litre of St. Mark’s solution – a DIY rehydration drink – and have been getting this down me throughout the day.

It consists of:

20g/six level 5ml tsp glucose.

3.5g/one level 5ml tsp salt.

2.5g/one heaped 2.5ml 1/2 tsp sodium bicarbonate.

Dissolve in 1 litre of water.

Keep chilled in the fridge.

Flavour with a small amount of squash or cordial.

It tastes slightly weird but is definitely improved with a bit of flavouring – I’ve been using my favourite cordial, elderflower and rose, made by Belvoir, which is delicious.

The doctor said this was good, as was Diarolyte, which I’ve been taking too.

60th Anniversary Meeting of Devon and Somerset IA

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.