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!

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!

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!

My First Prescription Parcel

Last time I attended the stoma clinic, the nurse set up my supply line to get the stuff I need for Kermit (my stoma) – bags and accessories. All these things are available on prescription on our wonderful NHS. The nurse ordered the things I would need for the immediate future and the parcel arrived in due course.

After this, it was up to me to place an order when I needed anything, and last week I did just that. After the stoma open day we attended in June, where we picked up loads of samples from different companies, I had the opportunity to try lots of different products, and decide which ones suited me best, so I knew what to order.

When the stoma nurse put in the first order, she sent a template for them to cut the bags to size, but when I used the bag that she cut for me that day, the hole was too large and almost immediately I was getting itching and skin irritation, so I removed the bag and cut a new one myself, and phoned her to let her know. I contacted the company and asked them to send the first batch of bags uncut, and I would cut them myself, which is what I have been doing.

I spoke to the gentleman at the company and said I would post him a template in due course, and that I would like my bags cut to this size thereafter.

The parcel arrived today, and all the bags are perfectly cut! Not only are they to my exact template, but they seem to have cut them with some sort of hot tool or laser or something because the cut line is extremely smooth and regular – far more so than I was able to do with scissors. I shall phone them in due course to tell them how pleased I am.

They have sent me 3 boxes of my regular Coloplast SenSura soft convex bags, and enough accessories to last the same time as the bags will last: adhesive remover wipes and barrier wipes by Independence; deodorising spray: NaturCare pouch deodoriser/air freshener spray in zest vibrant citrus by Opus Healthcare – I decided on second thoughts that this was preferable to my original first choice of the OstoMart mint drops, as the smell is gorgeous, and it doubles as an air freshener spray as well; and Silex silicone flange extenders by Trio Ostomy Care. I did not order any adhesive remover spray as I have plenty in the form of samples from the open day, and what the hospital supplied.

All the companies supply complimentary disposal bags and dry wipes, but I asked them not to send me any this time as I still have plenty supplied to me by the hospital.

The supplier I am dealing with is Patient Choice. They are a non-profit company which also supports ostomy charities. They have a service for collecting unwanted supplies and redistributing them free of charge to those in need. When I phoned through with my order, I asked about this, and they said they would send me a pre-paid bag to put things in and post back to them. I have got quite a few redundant bags from the days when I used flat-backed ones, and quite a lot of samples which I don’t want, and various banana flanges which the hospital supplied, which didn’t suit me. I also had a lot of stoma rings which I’ve never been able to get on with. All this stuff was taking up quite a lot of space in my storage tower and I am glad to be shot of them! I have packed them all up and they will go off tomorrow. It’s very nice to know that the stuff I do not want, but which is perfectly OK, does not have to be thrown away and wasted, but can be of use to others. I think this is an excellent idea.

So far I am very pleased with the company. They have been consistently friendly and helpful on the phone. They have been revamping their website, but this evening I was able to register online, and once I hear back from them I shall set up an online account and order my supplies from the website rather than by phone.

How the system works is that after a supplier receives the order, they contact the GP who issues a prescription, and then they fill it and post to you what you ordered. Easy peasy. The only thing to remember is to order in good time, just in case there is a problem with the post or something – one doesn’t want to run out of things, so it’s a good idea to order while you’ve still got plenty in reserve, especially if you are going on holiday, or around Christmas when the post can become unreliable.

Like many of the other supply companies, Patient Choice are not tied to any particular manufacturer. Whatever products are on the prescription tariff, they can supply. Everybody’s needs are different, and one’s list of supplies consists of products recommended by your stoma nurse as being appropriate for you, and your own personal choice.

An example of team work: between the patient, their stoma nurse, their supply company, and their GP. It’s a tried and tested system with the least amount of hassle involved for the patient, who after all has enough to deal with, managing a stoma, without having to stress about getting the stuff they need!