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!!