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!

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!!

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!