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.

CliniMed Coffee Morning

I realised recently that it is a long time since I updated this blog. I am doing several posts today, to bring it up to date – each one will be dated as if I had done them at the time, to keep things in chronological order, but I am in fact writing them in early May.

On 3rd May my hubby and I attended a coffee morning at the Imperial Hotel in Torquay, hosted by CliniMed, one of the companies producing ostomy supplies.

The gentleman presenting the event was familiar to me – he recognised me as we came in, as I had spoken to him at the open day in Newton Abbot last year.

The main theme of the meeting was the presentation of the new Aura flushable colostomy bag. He gave us the horrifying statistic that in the UK alone, 35 million stoma bags end up in landfill annually!! This is one reason they have developed the flushable bag; it is also more convenient for users because if they are out and about and need to change their bag, they do not have the worry of disposal.

http://www.clinimed.co.uk/Stoma-Care/Products/Closed-Stoma-Bags/Aura-Flushable/Product-Design.aspx

Each table in the room was supplied with several of the new bags, and also some of the new flushable adhesive remover wipes and barrier wipes, and plastic cups of water. We were invited to pull the bags apart – there is a tab that you pull and the outer cover comes away, revealing the soluble inner lining which can be safely flushed away; the outer covering is biodegradable and can go in the recycling bin. We put the wipes into the cups of water and watched them dissolve away before our eyes!

Because the inner linings of these flushable bags are soluble, they are only suitable for colostomy bags which are changed each time they are full. For us ileostomates we do not change our bags every time because they are drainable. Obviously the lining would start to dissolve long before we were ready to change the bag, leading to disaster! However, it’s a wonderful innovation and will certainly reduce the need to dispose of so many bags in landfill.

He said how convenient the flushable bags were for people going on holiday. He asked, “Is anyone planning a holiday in the Med this year?” and then added, pointing out of the window at the truly magnificent sea view from the hotel, “I don’t suppose you are… Who needs the Med when you’ve got this?!!” Torquay is not known as the English Riviera for nothing!

We had a good Q&A session and open discussion about different aspects of living with a stoma. The presenter explained how the supply arm of their company, SecuriCare, operates – they have a team of account managers and you are assigned one who deals with your region, so that whenever you need anything you always end up speaking to the same person, ensuring continuity, and a good and friendly relationship is built up over time. He asked which supply companies we all used, and one or two did use SecuriCare – he was certainly not in the business of poaching custom from other companies. I told him I was with Patient Choice, and he nodded in approval and said they were good. I explained that this was a small company with only about a dozen employees at most, some of whom work in the warehouse and do not deal direct with customers, which meant that there was no need to be assigned a special member to deal with each individual account – over the months I have been with them, I have got to know them individually, and they know my situation and my requirements. I would certainly not wish to change as I am more than happy with the service that I have received from the beginning.

He also explained that the manufacturing arm of their company is known as Welland, which is the name stamped on their bags. He said this does cause a bit of confusion, but Welland and SecuriCare both come under the umbrella of CliniMed.

I came away with some samples of the flushable wipes which were very good – and also a couple of pens – all my biros these days seem to have stuff about stomas on them as I always pick up freebies at the various meetings! It’s becoming a bit of a standing joke!

After the meeting ended, my hubby and I had a wander around the ground floor of the hotel. It is one of Torquay’s oldest hotels and one of the most elegant and beautiful. Having spent hours recently, choosing chandeliers for our house, I am noticing them everywhere, and was amazed at the beauty of the ones in the hotel – one of the staff members pointed out two that were antique French ones – very large, stunningly beautiful, elegant, and worth a fortune!! (I immediately thought of the chandelier episode in “Only Fools and Horses”!!)

The rooms were so elegant, with high ceilings, beautiful plaster mouldings, tall windows with heavy drapes, and stunning sea views everywhere. They have added sun terraces and other modern facilities out of doors and it must occupy the prime location on our coastline!

Devon IA Outing to the Met Office

I realised recently that it is a long time since I updated this blog. I am doing several posts today, to bring it up to date – each one will be dated as if I had done them at the time, to keep things in chronological order, but I am in fact writing them in early May.

The Devon branch of the Ileostomy and Internal Pouch Support Group (formerly known as the Ileostomy Association), Devon IA, had an outing to the Met Office on 9th March.

You can read about this on my main blog here. A most interesting afternoon out!

Devon IA AGM at Kennford

I realised recently that it is a long time since I updated this blog. I am doing several posts today, to bring it up to date – each one will be dated as if I had done them at the time, to keep things in chronological order, but I am in fact writing them in early May.

The Ileostomy and Internal Pouch Support Group (IA), formerly known as the Ileostomy Association, of which I am a member, had its local AGM at Kennford in Devon on 5th March. These meetings are always good to attend because you get to meet up with others in the same situation, meet old friends and make new ones. There is always a good exchange of ideas and experiences, both informally, chatting over coffee and lunch, and through discussion in the more formal part of the meeting. They have a table where you can put unwanted supplies, and take whatever you need, and they have the usual raffle and sometimes a quiz. There is usually a visiting speaker.

On this occasion we had a colorectal surgeon from the Royal Devon and Exeter Hospital in Exeter, speaking about hernias. A parastomal hernia is a very common problem indeed with ostomates, particularly people with a colostomy, and especially if they are older, and overweight, and being a smoker puts one at greater risk – the incidence of parastomal hernias is quite high, because the abdominal muscle wall is compromised by cutting a hole through which the intestine is brought out to form the stoma. He spoke about the problems of repairing them and how the risk of recurrence is high, and other measures that can be taken to prevent them developing. Some surgeons are now inserting a mesh around the stoma when the stoma is first created, and while this does strengthen the weak point, if further surgery is required (for instance if the stoma is reversed, or there are further abdominal problems requiring surgery) the presence of the mesh makes it a lot more difficult to operate. He spoke about synthetic meshes and also the use of pigskin!

A hernia can develop even through a simple activity like coughing or sneezing! In order to prevent hernias developing one should avoid heavy lifting, and if one has a severe cough, support one’s abdomen when coughing. There are various support garments that can be worn as well, but he said that these are more useful after one has developed a hernia than in prevention, although my stoma nurse did refer me to a fitter of support garments as a preventative measure.

He spoke about the anatomy of the abdomen and the different muscles involved. He said that in recent years, surgeons have tended to site stomas more towards the midline than before, and this could help in hernia prevention over time; being sited more towards the side of the abdomen, the musculature is weaker and more likely to herniate.

He asked for a show of hands and quite a few people indicated that they had developed hernias.

In the morning we had the business part of the meeting – the AGM, with appointment of new officers, financial report, etc. etc. and details of future meetings, outings, presentations by manufacturers, etc. Lunch was provided, and tea and coffee.

IA Meeting at Ottery St. Mary

Recently, a problem has arisen between Windows LiveWriter, my preferred blogging software, and Google Blogger, and I have been unable to publish any new blog posts since then. Now, thanks to the valiant efforts of a team of volunteers, Windows LiveWriter (which Microsoft is no longer supporting) has been launched in an open source format as Open LiveWriter. The team has been working hard to iron out the various glitches over the past week or so. This is my first post using the new software, and is also by way of a test to make sure everything is functioning as it should. So far, there is no facility for adding categories, but we are hoping for this to be available soon, after which I shall edit this and subsequent posts to include these.

On 5th December, my hubby and I went to an IA meeting. I think IA used to stand for the Ileostomy Association but its full name is now “The Ileostomy & Internal Pouch Support Group” which is a bit of a mouthful but I suppose they felt they had to include the J-pouch folks who are also sans-colon and might feel left out!

A little while ago we went to a small open meeting and there was an IA stand there, and I thought for the moderate consideration of £10 or annual membership, I might as well join. They have a local newsletter as well as the national journal, and regular meetings throughout our area, although some of them do involve quite a distance for us to travel, so we won’t be attending them all. The chairman in a charming man whom I had met several times at various meetings.

The meeting on Saturday was interesting for us both because in the afternoon there was a fascinating talk given by a visiting speaker, on the major renovation works being carried out at Castle Drogo, one of our local National Trust properties – a real, solid granite castle designed by Lutyens in the early part of the 20th century, said to be the last castle built in England. What the speaker thought of the rest of the meeting, I have no idea, but I did speak to someone not long ago who’d been a visiting speaker at a similar meeting and they said their eyes had been opened – they had no idea what the world of stomas was like, and it was an education for them! I am all for stoma awareness, and who knows what these speakers will tell others, spreading awareness.

When we arrived, there was coffee, and then we had a marvellous cold buffet that was all laid out, and the opportunity to chat and meet new people. During the course of the day I spoke to one or two people who were very negative about their ileostomies and not at all well adjusted to bag life, and I hope I was able to help a bit by giving pointers towards having a more positive attitude to something that after all isn’t going to change, no matter how you feel about it, so you might as well develop a good one! This makes the whole business so much easier to live with, and turns what you once thought was a disaster into an adventure. One needs to emphasise the positive benefits of being an ostomate as opposed to a butt crapper!

After lunch, we had the talk, and then the meeting led by the chairman. He was soon to be going to the national meeting of the association, and wanted our opinion on certain things so that he could put our local group’s views forward.

The first thing was about hernias. People with stomas are far more at risk of developing a hernia than “normal” people because the strength of the abdominal muscle wall has been compromised by the creation of an opening. The NHS does seem to be waking up to the fact that prevention is better than cure, and from my own experience I know that the machinery is in place to provide us with support garments free on prescription. However, the suggestion is now being made that surgeons should put preventative measures in place during the initial surgery when the stoma is created, in the form of a circle of mesh to strengthen the muscle wall at that point, and our chairman wanted to know our views on this, and whether we thought this was a good idea. The response was pretty well unanimously in support of this idea, although one person did say they had this mesh, and it was rather uncomfortable.

A discussion then ensued about the length of ileostomies, and someone suggested that the “fashion” has changed over the years, from creating longer stomas to shorter ones, and even ones that were pretty well flush with the skin. This is not a good idea because it causes more leaks. A longer “spout” tends to cause the output to flow into the bag with less risk of it seeping under the flange of the bag and causing skin irritation. Kermit does not protrude very much and looks like a little rosebud, rather than the red willie that I was so terrified my surgeon would create – before my surgery I didn’t know why this would actually be better in the long run! Anyway, people were saying that it was now the norm to have a much shorter ileostomy, and more people were having to use convex bags to counteract the problem it creates.

After discussing future meetings, including an outing to the Met Office in the near future, he passed round a questionnaire about pouch deodorisers. He said that with the financial shortages in the NHS, the provision of these might be one of the first things to go from the prescription tariff, and he wanted to know our views so that he could pass them on to the national meeting.

The questionnaire asked whether we used these, and/or room sprays, and how often we used them (at each bag change, or at every bag emptying), whether family members complained about smell, and so on. We were asked whether these products affected our confidence and how well we dealt with life with a bag.

I think the NHS needs to remember that managing a stoma isn’t just about having the right bag to collect the output, but it is also about adjusting to a very different way of life that can really knock the confidence of many people. Going to the loo is a private, intimate thing and if we are more conscious of producing more smell than normal people, this can be a real worry, and even prevent some people from leaving the house, let alone living a normal life. It is about quality of life for the whole person, to enable them to return to as normal a life as possible. My personal view is that it would be a big mistake to remove these products from the tariff because they make a huge difference to people’s lives and how they feel about themselves.

Since getting around to posting about this meeting, I have been adjusting to my new cancer-free status after my all-clear scan result, and dealing with a lot of conflicting emotions (more on the Cancer Diary page of my main blog) and also suffering from more exhaustion than normal, which is probably a reaction to everything that has happened. Both blogs have therefore been rather neglected of late, coinciding with the LiveWriter/Blogger problems detailed above. Hopefully from now on, this situation will be rectified.

More About Convex Bags and Support Garments

This morning I saw the support garments lady at the hospital. I took in with me the wrap and pants I’d got from SupportX online some time ago, and she shook her head at them and said that neither was giving any real support at all, which I was pretty much aware of. I told her that the wrap kept rolling up at the back and was not wide enough top to bottom.

She suggested a proper belt with a Velcro fixing, and got several out for me to try, but again the back rolled up, and she said they were not really suitable for me, and that I’d be better with support briefs. These garments are all specifically designed for people with stomas.

We tried a pair of these and they were much better. They are made of very nice firm smooth stretch fabric and she said they would offer sufficient support to help prevent a hernia developing. Hernias are very difficult to treat and the operation is not always successful, and prevention is very much better than cure, and even though the support garments are expensive, they are a lot less of a drain on the NHS budget than a hernia operation.

She has ordered one pair for me to start with, and after a week or two, if they prove satisfactory, I can phone the number she has given me and they will order 2 more pairs. I am allowed 3 during one year, and she doesn’t want to waste my prescriptions by giving me 3 all at once, in case they aren’t right for me, but I think they will be fine.

On the subject of convex bags, after I spoke to the Coloplast rep at the open day back in June, I was told that I would be contacted once the new Sensura Mio convex bags were launched, and I would be sent some samples to try. I was told this would happen in the autumn. Not having heard anything, I phoned in October and was told they would be launched in November. I then heard that earlier this month someone on the stoma forum on Inspire had already got her samples, so I phoned again, and was told they would phone me, which they didn’t.

I phoned again last Friday and was told that someone would definitely phone me on Monday (yesterday) – they need to speak to you so they can fill in a form, getting information from you about the size of your stoma etc. so that they can send the correct samples out.

At 4 p.m. yesterday they still hadn’t phoned, so I rang them again and I was told that no way would I have been phoned yesterday because each request took 24-48 hours to process! She wanted to know who I’d spoken to, and of course I couldn’t remember his name… She could find no evidence that I had phoned at all! Honestly, I do get fed up with these firms that pass you from pillar to post and nobody will take any responsibility, and all they can say is, “They shouldn’t have told you that…” as if it is my fault!! I said I’d been waiting a long time, and had contacted them repeatedly, and I was anxious to get my samples asap as I wanted to be able to order them with my next order from my supplier if they were suitable, and I’d been deliberately running down my supplies. I told her yet again which days I’d be in and when I wouldn’t be available this week (I have 3 hospital appointments 3 days running) and she said she’d try and push for a phone call this morning (Tuesday) before we left for the hospital for my support garments appointment. Of course, there was no phone call.

She told me I might not hear before Friday! I told her that was a whole week on from when I’d first phoned them asking for samples. I really do think this is pretty shabby and I told her so.

I wouldn’t be a bit surprised if they phoned tomorrow when we are out. I wouldn’t put it past them…

I know they are inundated with requests for samples of these new bags, but I have been on the list to receive them since June, so surely I can hardly be considered to be at the end of the queue. I am wondering if I’m ever going to get them!!

Tomorrow I am going in to the day surgery unit so that my surgeon can examine my rectal stump under general anaesthetic. When I saw his registrar at the end of October he couldn’t see much because it was full of muck and pus, and it was rather uncomfortable having the proctoscope in for any length of time, so he said he would discuss it with Mr. Pullan who would probably want me in for a fuller investigation. I have to be there for 8 a.m. having had no breakfast. I should be home by lunch time, depending on how things go, and how soon I am over the anaesthetic and able to leave.

On Thursday I have my CT scan, and on 27th, bloods to be taken at the Ricky Grant (chemo) unit. On 30th November I am seeing the oncologist after she’s received the results of the scan and bloods, and I am hoping for the cancer all-clear! I counted up all my appointments this year since my diagnosis in mid-January, and up to and including the oncology appointment at the end of this month, the total is 49!!

Stoma Clinic Appoinment–Bag Advice and Support Garments

Recently I noticed that where the convex flange of my Coloplast bags sticks to my abdomen, it has been making the skin a bit red, and now that the moat has disappeared from around Kermit, I wondered whether perhaps I still needed to use convex bags, or whether I could return to the flat ones, so I contacted the stoma clinic and they arranged for me to come in and see someone after I had seen the surgeon at the hospital this morning about my rectal mucous discharge (see my Cancer Diary entry today for details of that appointment), as it was in the same department.

I saw Nita this morning, and she had a look, and said that my skin continued to look very clean and healthy, and that all was well. She said that Kermit does not protrude very much – we laughed when we reminisced how freaked out I’d been before my surgery, by the stoma clinic’s DVD with the young lady with the red willy on her tummy and how I’d asked Mr. Pullan NOT to give me one of those!! – but sometimes a bit of protrusion is no bad thing! She said that I should continue with the convex bags for now, but there may come a time when I could return to the flat ones. I do not mind either way, as I am happy with the Coloplast soft convex bags, and am awaiting the arrival of the new Mio convex bags – I just wanted to be sure they were still happy with how things were, so I was reassured. The main thing is to avoid the possibility of leaks, and if the stoma doesn’t have a very long spout, the convex bag does make it protrude more, so that the output is sure to go into the bag, and not seep out under the flange and start irritating the skin.

She said I had done the right thing, coming in to ask. If the skin redness gets worse, then it might be time to look again, but probably there wouldn’t be likely to be any change during the next two or three months.

When she removed the bag, she remarked on the banana flanges I was using and asked if they were the Trio ones, which I confirmed was the case, and how much I liked them. They are their Silex Flange Extenders.

I was also able to report that I was getting on very well with Patient Choice, my supplier, and how businesslike they were, emailing me as to when to expect my parcel to be delivered, etc. She was pleased to hear that, because she said that not all companies were that businesslike.

We also spoke about support underwear. I mentioned to Nita that I had been experiencing a bit of pain around the stoma and in my abdomen lower down, but that the surgeon had reassured me that there was no evidence of a hernia. People with stomas are much more at risk of developing hernias because their abdominal wall muscles have been compromised by the cutting of an opening, and support garments are a good idea to prevent hernias developing. The surgeon said the pain I had been experiencing could just be the development of some scar tissue – there may be some adhesions, especially as I have also had a hysterectomy (20 years ago) and there’s been a lot going on in that area, but it was nothing to worry about. Nita could see that the rather large SupportX pants I had on were doing very little in the way of support; even if they were smaller, the fabric was not particularly firm or stretchy.

A few weeks after I received the two pairs I’d ordered from SupportX, they sent me another two, which have remained in the drawer still in their original wrapping, so I took them in today and gave them to Nita to put in her cupboard in case anyone else wanted to try them.

She said we could do better than this, and suggested I came in to see the lady who does the girdle fitting, so I have an appointment on Tuesday 17th November in the afternoon.

Nita said that they were getting very good reports of the support underwear now available in regular clothing shops such as Marks and Spencer’s, Matalan and PriMark, and they were not expensive. She said in the meantime I could try those, so after my appointments at the hospital we went off and I got a couple of pairs of pants (they only had two in my size, but they will keep me going for now).

You can see that there is a lace panel on the front. The fabric the pants are made of feels very firm and stretchy, and I think they will offer a lot more support than the SupportX ones.

I told her that the SupportX wraps I’d been wearing at night were a perfect pain because they are not deep enough and keep rolling up at the back.

In SupportX’s picture it looks nice and deep but on me it seems about 2/3 the depth!

She said the girdle fitting lady should be able to provide me with something better, and in the meantime I told her I’d ordered some cheap pregnancy body bands from Ebay which I thought I would try.

These look a lot more generous! They were very cheap, so I hope they will be stretchy and supportive enough. They are supposed to support one’s back as well as one’s abdominal muscles, but we shall see.

Another advantage of these garments (and my main motivation for waning them originally) is that they hold the stoma bag in place so that it doesn’t flop about – this was something that used to bother me quite a lot at night. During the day, they help maintain a smoother profile so that the bag doesn’t show so much through one’s clothes.

Obviously I have had to pay for the belly bands and the Matalan pants myself (the were not too expensive either - £6 per pair), and I bought two pairs, intending to wear them over my regular underwear as I have done with the SupportX pants), but anything recommended by the girdle-fitting lady or the stoma nurse, manufactured specifically for stoma care, should be available on prescription. The products designed specifically for stoma care use often have a separate pocket to contain the stoma bag, keeping it out of direct contact with the skin, which obviously normal support garments available in regular shops do not.

This whole thing continues to be a learning curve! An interesting one, though. I have found the whole process both fascinating and educational!

Part of the problem is having to shop online for certain products, and not being able to handle them to see how stretchy and firm they are, and not being able to try them on. The advice of the stoma nurses is extremely helpful, though, and I am sure the appointment with the girdle lady will be informative and useful.

I offered my services as a volunteer to help anyone wanting to speak to someone who has a stoma, and she was happy to put me on their list. We had a chat about what it is like for people in the early days – I reminisced about my tears on the phone and in the clinic, when I felt totally unable to cope, and wanting to phone the hospital lab and ask for my colon back (minus the cancer!) so that it could be sewn back in and I could resume my life as a butt crapper!

There are times when one thinks one will never get to grips with the bag, as one’s body changes shape and the stoma shrinks, and you get leaks and skin irritation. All being well, and in the absence of other complications such as prolapses or hernias, suddenly things slot into place and one starts managing like a pro, and it just becomes part of one’s daily routine. I said how very comforting and reassuring it had been during those difficult times, to phone up (usually in a bit of a state!) to be told to come in and they’d fit me in, and they always managed to sort me out, calmly and efficiently, putting my fears to rest. She said that this was the bulk of their work, helping people out in the early days and teaching them how to manage, so it’s all in a day’s work to them! They are the unsung heroes of the colo-rectal world!

I hope anyone reading this, who is struggling through the early days, will be encouraged and reassured. It really is not that bad once you get used to it, and always remember that the stoma nurse is your best friend!

Do I Need to Change to a Different Bag?

On Friday I phoned the stoma clinic to see if they could fit me in on Thursday morning when I am due to see Mr. Pullan about my rectal discharge. They promised to phone me back but were very overstretched and understaffed, and I didn't hear anything until today. They say they can fit me in, and all I need to do is tell reception when I arrive, and they will be available once I come out from seeing Mr. Pullan. None of it should take too long.

The reason I want to see the stoma nurse is that recently I have noticed that my body has changed shape again and the moat around Kermit seems to have disappeared. Where the convex flange of the bag sticks onto my abdomen it is now leaving a reddish mark - not sore or anything, but it may be indicative that the bag is now putting undue pressure on my skin, and it may be that I no longer require a convex flange. I need to see the stoma nurse so she can have a look at it, and she will know whether I can return to flat-backed bags. It is now 7 months since my operation and I thought my body had stopped changing shape, but apparently not!

I have also noticed with the last two bag changes that there had been a bit of seepage of output underneath the flange. I am surprised there was no skin irritation, but it has been fairly thick output recently, and that may be something to do with it. I shall tell the nurse about this and see what she has to say.

When I spoke to the nurse on the phone today, I mentioned that I would like to go on their register of volunteers who are willing to meet with newbies and encourage them through their initial stages, pre- or post-operatively. I am managing so well now, and although I'm only seven months into my stoma journey, I know that I can encourage others on this path, and reassure them that it will get easier, and help them to come to terms with having a stoma. It is a huge change, and can be very frightening and daunting, but once one gets through the initial teething problems, there is no reason why one cannot live as full and normal a life as one did before.

Pelican Meeting

Today my hubby took me out which was lovely. I tend to get a bit stir crazy stuck in the house all the time, although I do love being at home, and I get a lot of contact with the outside world via the internet.

We had had a letter in the post a while back from Pelican Healthcare (who supply stoma products) saying they would be visiting our area and a small open afternoon had been arranged in a local hotel suite. This hotel, the Passage House, just outside Newton Abbot, is just next to the Passage House Inn where we have often eaten out, so I suggested we went out for a nice meal first, and then went to the meeting, and this we did. They have a carvery every day and we both opted for that - quite delicious!

Not very many people attended the meeting unfortunately, but the lady from Pelican remembered me from the open day in Newton Abbot a few months ago and was interested to hear how I was getting on. I had a long chat with the couple who run the local branch of the IA (used to be Ileostomy Assoiation but now the Ileostomy and Internal Pouch Support Group) which I decided to join today - I'd thought about it before and didn't see much point as I was getting a lot of help and support from the Inspire forum and from the stoma team at the hospital, but they have meetings several times a year with different speakers, and it's an opportunity to meet up with other ostomates and their spouses.

Light refreshments were laid on, and I had some good conversations with several people there, as well as being able to pick the brains of the Pelican representative about one or two things. I came away with a few samples and other bits and pieces, including the inevitable free pens and notebooks! Always useful!

I was keen to try their barrier wipes because I’ve been experiencing some problems with the Independence ones I’ve been using – sometimes the bag doesn’t want to stick on quite as well as it might, but the Pelican rep agreed with me that it might be that it wasn’t quite dry before applying the bag. I couldn’t remember if I’d picked up any Pelican barrier wipes at the open day a few months ago, and if I did, I didn’t put them on my comparison charts which was a nuisance. Anyway I shall give them a try, and if I like them, I may order them instead, next time I’m putting an order in with Patient Choice, my supplier.

I was also quite interested in their wraps, which the rep said were not as supportive as the SupportX ones I have got, but they did seem a bit longer in the body, which might prevent them rolling up over my bum at night! I think I need to do a bit more research into this before I order any more. I am entitled to six pairs of paints (ooops! I mean PANTS – that’s the artist in me speaking lol!) and four wraps per year on NHS prescription. I have four pairs of the pants which I think are really a size too big, and they are not very supportive, although they do keep the bag a bit flatter than without.

The IA is holding a local meeting in Ottery St. Mary at the beginning of December, with a visiting speaker from the National Trust, speaking about the renovation work at Castle Drogo which I know both my hubby and I will be interested in, so we shall be going to that. Lunch is laid on, and there will be the opportunity for conversation with fellow ostomates. The meetings are apparently quite well attended.

I am rather tired now after a quite busy day, but it was worth it. Always nice to get out of the house, and while the weather looked distinctly unpromising first thing (raining) and we decided to leave the buggy at home, it did clear up and was quite sunny but rather windy, so we didn't get wet.

I enjoy these meetings attended by fellow ostomates, and as time goes on, I am hoping to get to know them all a bit better, and make some new friends. A local support group is always a good thing, I think, and who knows – in time, I may be able to offer support and help to others!

Stoma Pants and Wraps

Today, at long last, my prescription underwear arrived. I think it says something about my life at the moment that I got really excited – I know, I know, I should get out more…

They are made by SupportX and I got them on prescription, free of charge. I ordered two of each to start with. Your yearly allowance is six pairs of pants and three wraps, but I’ve got enough to be going on with for now, because the pants will not be worn against my skin but over my normal pants, so I can have “one on, one in the wash,” as they say.

I have to tell you, these are NOT the most glamorous underwear you’ve ever seen by a long shot. The pants are enormous! I couldn’t stop laughing, especially when my hubby said they were sweet! lol lol!!

Are you ready for this?

The pants are deliberately made really high waisted so that the top doesn’t interfere with the stoma, and everything is adequately covered up.

Turned inside out, there is a separate pouch affair that runs across the front, attached at the sides, and you wear this closest to yourself, and slip the bag into the pouch, so that it is sandwiched between the pouch and the outer layer of the pants, keeping it away from your skin. It supports it and stops that dragging feeling when the bag is filling, and distributes the contents a bit so that bulges are less likely to show on the outside.

You an see that there are two holes at the bottom. These are for drainable ostomy bags so that you can, in theory, empty the bag without removing the pants. However, I am not doing this because I am afraid of making a mess!

I got the wraps to wear at night. They are similar to the pants, but more stretchy and tight. Again, they support the bag and keep it flat against you. I find that in bed, the bag does tend to flop about a bit and it sometimes wakes me up, and with the wrap, this should no longer happen.

Inside out, the wraps also have an inner layer so that the bag is sandwiched between two layers of fabric and held away from your skin. The hole is there to push the bag through – it doesn’t look very big but the opening is very stretchy, and there’s no problem getting the bag through it.

What did I tell you? Not the sort of thing you see in Vogue lol! I think I am getting old… Before I went into hospital I got some new bras and was horrified that they had THREE hooks at the back – I told my hubby they reminded me of the “ladies’ foundation garments” that my mum used to wear in the 1950s and he said that sounded like concrete blocks! He wasn’t far wrong.

I think it’s rather funny that I have multi-coloured hair and wear quite funky clothes, and nobody (except you lot of course) will know what horrors lie beneath!

Hope this has given you a good laugh. It has me. But at least I know that my “medical appliance” (doesn’t THAT sound awful – but it seems to go with the pants lol!) will be held secure and will be more comfortable, and it should help with the prevention of leaks, too.

Oh, the joys of being a Gutless Bag Lady… Whoever would have thought Shoshi would come to THIS…

My Final Scheduled Stoma Clinic Appointment

I had a stoma nurse appointment this a.m. and she expressed herself as extremely pleased at how things are. She was very impressed with how well the operation wound and Kermit have healed up, and how clean and healthy the peristomal skin looked. I have been using Coloplast SenSura soft convex bags for a while now, and have recently started using Trio Silex Flange Extenders which are a total dream – very thin, flexible, almost invisible soft silicone which peels off really easily without leaving any residue, and breathable.

Because I am doing so well, she hasn’t scheduled another appointment unless I want to come back, say after the chemo has finished in the autumn, or if I have any problems.

Since my surgery, I’ve had problems with mucous discharge from my rectal stump – a feeling of needing to “go” and not being able to bear down. Quite a lot of discharge coming when I’m on the loo, with sometimes a definite “plop” as the plug comes out. Sometimes it’s a bit pink with blood. The chemo makes it worse. I have tried a technique called “anal stimulation” which spinal injury patients use to help them evacuate their bowels. You push in a finger a short way and twirl it round and round to open the anus, allowing the content to escape. I use a piece of toilet paper, to do this, and it allows quite a bit of mucus to escape.

My surgeon said a lot of people have this problem post-surgery and that it may eventually clear up.

I have read that mucus is a natural discharge from the large bowel and rectum, which helps lubricate the stool on its way out, being absorbed by the stool in the normal functioning system. Once there is no stool to come out, the mucus is still there and has to come out. I have a short rectal stump and am amazed how much it can produce! While for some people this can stop eventually, it seems more logical, given the above, that it would go on forever because it’s a normal body process to produce it.

I spoke to the oncologist about it last month and she said I might mention it to my stoma nurse, and then she said, “I’ll phone her straight away and see what she suggests.” (They are so marvellous – everything I tell them gets dealt with straight away and they always seem to have an answer up my sleeve to help me through my various difficulties, but the secret is to tell them everything so that they know, and can help.) She came back to say that the nurse recommended something called “Micralax” which is a small plastic capsule with a plastic tube on it which you insert into the rectum and squeeze the liquid in – it is a mini-enema. You keep it in for 5-10 mins or however long it takes to soften the mucus and then this comes away when you go to the loo.

She gave me a prescription straight away, and I tried it that night, but was amazed how painful it was – not the insertion of the tube, but the stuff itself. I couldn’t bear to keep it in even for 5 mins. and after I’d expelled it down the loo (before it had really had a chance to work) my bum was sore for quite a long time afterwards. I’d been told to do this twice a week, and it was just as bad the next time, after which I phoned the stoma nurse.

She said that this stuff does tend to cause a bit of pain, but in my case it sounded more extreme. She said there might be some inflammation in the rectal stump, and to try using it once a week. It was still painful a week later when I used it but not quite so bad. She said if it wasn’t any good, we could try glycerin suppositories which are more gentle, and to leave it until my appointment today, when she gave me some suppositories to try.

The discharge doesn’t seem to be so bad at the moment. I do find that the discharge comes in waves – for a couple of weeks or so it’s a real problem, then it seems to disappear for a bit, only to return. It’s very unpredictable, but the chemo does make it worse. I shall be trying the suppositories when it returns again.

She said that if they work, I can get them on prescription via my GP, so no need to return to the stoma clinic for them.

I also enquired again about support pants and wraps, which I’d asked for some time ago and nothing had been forthcoming, and she showed me some samples from their store cupboard and gave me some leaflets to take home. She suggested I search the Internet and find something I like, and they will arrange a prescription from my GP. I have been resting (and sleeping) this afternoon as I am feeling very wiped out again after my chemo on Friday. I have not yet therefore had time to explore and find what wraps/pants I want yet. Eventually, once I’ve decided, and started with a couple of each from the manufacturer(s), my regular supplier will be able to provide me with them with my normal orders from them for bags etc.

The stoma nurse was impressed with how well I am, despite the chemo, and how well I am coping. We chatted about attitude, and how being positive, upbeat, keeping a sense of humour, and thinking of others, all help one enormously. I have every expectation that I am going to beat the cancer completely and make a good recovery from all the illness and trauma of this year. I said to her that it has changed me, and hopefully made me a better person, and I have learnt so much, and made so many new friends around the world, and unpleasant as much of the procedure has been, given my time again, I would not change a thing. I never, never thought I could ever say such a thing but it is really true. My life has been incredibly enriched through this experience.

While we were waiting for my appointment, and then afterwards when we came out, we met up with 2 lovely ladies (it turned out my hubby knew the daughter from where we used to live) – the elderly mother is a new ileostomate (since May) and is struggling a bit. My hubby and I were able to tell her quite a bit and he’s given them our number so if she wants to come over and have a session in what my hubby calls my “girlie bathroom” (lol!) she is most welcome, and I am sure I can help her. I told her several good suggestions I’d learnt on the Camp Crappy forum on Inspire, which were news to them both, and said I’d be happy to help with any questions she might have. I feel so great, being quite a newbie at this myself (just under 5 months post-surgery) but doing so well and now being able to help others get through the rocky first months of their own journey. I am so grateful to Camp Crappy which has helped me so much and helped me to be informed, and much more able to cope. This poor lady has very poor appetite so we are going to try and help with some nice tempting food ideas too – my hubby has been “feeding” me throughout and we know what’s good for stomas, and what is enjoyable and appetising when one is on chemo and not feeling like eating.

The stoma nurse loved my hair! I told her I’ve started telling people it’s a side effect of the chemo lol! I’m waiting for someone to say, “What are you on? Can I have some?” Hahaha!!