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!

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!

Ostomy Open Day

Until a few months ago, I had no idea that such a thing as an ostomy open day could even exist! I picked up a flier at the hospital advertising this event, which took place at Newton Abbot Racecourse – strange venue, I thought, not realising that they have a conference centre there.

It was a very interesting and exciting event. I was delighted to see all the stoma nurses there from Torbay Hospital, and was pleased to be able to speak to the nurse I saw the other day, to clarify a point I forgot to ask her. She said they had organised the event, and all the companies represented there had dealings with the hospital, and I could choose whatever samples I liked, and give them a try.

Coffee was served, and there was someone doing manicures, and plenty of people attended, so it was a lively event. It was particularly nice to be able to see a lot of the products “in the flesh” that I had only seen before online, and to talk to the various representatives and discuss different options.

We came home laden with bags of samples and fun freebies, and I spent quite a long time sorting through them and photographing them. Eventually I shall be reviewing and comparing the various products and putting these on my Products Page (see tab above), once I have had a chance to try them all, but for now I will show photographs of groups of items from the various companies.

CD Medical

PeelEasy adhesive remover spray, which has a revolutionary propellant system with the liquid in a bag inside the tin, and no propellant gases, which means the whole tin can be filled with the liquid. Also, it will spray whatever way up the tin is held. Also, PeelEasy adhesive remover wipes. I find that using the spray to remove the stoma bag usually leaves a little adhesive residue on the skin, and spraying onto a tissue to remove this is not as effective as using a wipe.

Emollin emolient spray for dry or irritated skin – not for use in the peristomal area, but for elsewhere on the body; CliniFilm barrier spray and wipes.

Colostomy Association

A couple of issues of this organisation’s magazine. Glancing at these (I haven’t had a chance to read them yet) it looks as if many of the articles will apply to ileostomates too.

Convatec Mouldable Pouches

Unfortunately I wasn’t able to speak to the representative about this product. Leaflet and free post-it notes.

IA (Ileostomy and Internal Pouch Support Group)

They had a delightful colouring book for children, to help them through what must be a huge trauma for kids, having an ostomy. The book would also help a child deal with a parent or sibling undergoing surgery and learning to manage a bag.

IA Journal, and an invitation to an upcoming local meeting. Nice freebies: pen, lens cleaning cloth, notebook, post-it notes. Nice colour scheme for their product line!

Independence

Leaflets, and a nice sample pack which included their adhesive remover spray that had a clever top which you twist to open, so you don’t have to fiddle around with lids; lemon and lime fragranced odour eliminator spray which neutralises odours rather than masking them when you spray into the air; AcuBond strips (banana flanges); absorbent strips – when inserted into the bag, they convert liquid output into a gel; barrier wipes and adhesive remover wipes; leaflet about SilBond silicone glue. They also gave me a nice pen.

Miscellaneous Items

Gellymate absorption tablets from Peak Medical (another output thickening agent); Crohn’s and Colitis UK information and local event flier; Morform gelling agent from CliniMed (another output thickening agent); Charter Delivery Service leaflet from Coloplast and another nice pen; SecuriCare “Can’t Wait” card to use in a queue for the loo.

Opus Healthcare

Three different NaturCare odour eliminator sprays in Lightly Perfumed (a very pleasant scent reminiscent of 4711 eau de Cologne), Unscented, and Zest Vibrant Citrus fragrances; LiftPlus Citrus adhesive remover spray.

Two small “pouch bridges” – little cubes of foam rubber with a self adhesive surface on one side – these are placed inside the bag to keep it open and allow the output to flow throughout the bag, to prevent pancaking. LiftPlus Citrus adhesive remover wipes; LaVera barrier cream with the most gorgeous lavender and aloe vera fragrance; SkinSafe barrier wipes; NaturCare IPD (In-Pouch Deodorant); DeoGel deodorising lubricating gel to help output flow throughout the bag, to prevent pancaking.

OstoMart

A large selection of samples: OstoPeel adhesive remover spray (blackcurrent fragrance); a sample box containing Astoa products (barrier cream, adhesive flange extenders large and small, mouldable adhesive ring seals thin and standard, and a leaflet); brochures and leaflets; OstoSorb odour neutralising absorbent gel; OstoFix security tape, OstoFix 80 and 40 security frames (I have had these supplied by the hospital and didn’t like their over-stickiness and the fact that they made my skin itch because they didn’t breathe); OstoClear adhesive remover wipes; OstoZyme odour-neutralising lubricating gel; OstoPeel adhesive remover wipes in raspberry, mint and apple fragrance; OstoGuard barrier cream; OstoGuard barrier wipe with lavender fragrance; OstoClenz no-rinse skin cleansing gel (for hands); another “Can’t Wait” card.

Pelican

It only occurred to me the other day the significance of the name – pelicans have pouches! Duh. They don’t keep poo in them, though. Leaflet regarding their delivery service; Release adhesive remover spray – I had some of this from the hospital when I first started, and it has a lovely fragrance of mint, with added Vitamin E for skin health; Release wipes; peg to keep one’s clothes out of the way; supermarket trolley token on a keyring.

I spent some time on the Salts MediLink stand, and they had several bags on display. This one particularly caught my eye; my friend Shaz has a great roll-up bag and I really wanted one of these, and this is the closest I’d seen to that. The gentleman on the stand gave it to me! Here is the bag rolled up and clipped shut.

Opened up, it reveals a number of zipped pockets, and a loop at one end, from which you can hang the unrolled bag to give easy access to all your supplies.

Here it is after I transferred all my travel stuff from my original bag:

This bag is going to be a lot more practical than the one I got from the hospital, nice as that one is. It is a fraction of the size and still holds all my stuff – with the exception of my Vanish laundry stain remover pot which I carry around in case I need to empty my bag in an emergency away from a loo, for example in the car – I have decided to keep that original bag in the car with that pot in it, along with my change of clothes. My hubby agrees this is a good idea, and it’s going to make a lot more room in the sling underneath my wheelchair which is now always full to bursting with all this gear!!

They gave me lots of nice freebies and leaflets about their MediLink supply service: anti-bacterial hand-cleansing gel – my hubby bought me some of this from the pharmacy recently and it has an awful sweet fragrance that I can’t abide! This one, however, is unperfumed (apart from an alcohol smell as you apply it, which disappears once it is dry), and it closely resembles the stuff in the wall pumps in the hospital. This is definitely my go-to stuff! Also another nice pen, a nail file, another lens cleaning cloth and a cool drinking water pouch! They also arranged to send me a decent pair of scissors with curved-up blades for cutting my bags until I get them sent ready-cut. This stand had some lovely stuff, and very friendly staff. They have a local office in Exeter. I have to admit they would be a nice supply company to deal with.

StomaWise

StomaWise is a UK-based charity which supports stoma awareness and provides OstoBears for children undergoing stoma surgery – each bear has a paediatric bag attached with Velcro over a lifelike little red stoma! The bag can be removed and replaced, for teaching purposes. They come dressed in pyjamas, like the children when they are in hospital, and being 16-inch bears, they are too large for Bear Factory or Build-a-Bear clothes (these bears are 14-inch bears) but StomaWise has an arrangement with Build Your Bear’s Wardrobe which makes clothes to fit these larger bears, and the children can get a 10% discount on the clothes when they register their OstoBear. I think OstoBears are the cutest idea, and I am sure they help a lot of children get through what is a traumatic enough experience for an adult.

Until recently, StomaWise had a forum on their very comprehensive information website, but this forum had to be closed because it was inundated with spam posts and they didn’t have enough volunteers to moderate the forum 24 hours a day. What a shame.

They also do pouch covers in a variety of designs. I made a donation into their tin and was given an ostomy awareness wrist band and another nice pen!

Suportx

I picked up some leaflets from this stand; they produce beautiful support underwear for ostomates, with a pocket built in to support one’s bag. The nurse has prescribed a wrap and two pairs of pants for me, and it will be interesting to see whether they come from this company. The quality seemed excellent.

Torbay Hospital

Finally, we picked up some leaflets from the Torbay Hospital stand. My hubby picked some up in my absence earlier, not realising I had these already – also I no longer require the low fibre/low residue diet one because I was only on this for a relatively short time post-op.

There were quite a few more stands from which I didn’t pick up any samples, freebies or info – these were mostly of limited interest to me.

At the end they called the raffle, and my hubby won two items! (He always wins…) He allowed me first choice, and I couldn’t resist this wonderful Moroccan Oil hair pack:

This stuff is frightfully expensive, smells divine, and works wonders on one’s hair! With his second winning ticket he chose a meal for two in a nice eatery – not sure when we’ll go there!

Good News on the Coloplast SenSura Mio Range!

I was thrilled to be able to speak to the rep on the Coloplast stand when she returned from lunch. I told her how much I liked their bags – my original bag in hospital was a SenSura. I am currently using Coloplast SenSura soft convex bags, and was very sorry to have to give up using their new SenSura Mio bag because my body was changing shape and I was getting leaks and required a convex flange; unfortunately the convex bag is only available in their original SenSura range, which is nice enough, but lacks the beautiful new cover of the Mio, and the slim, soft feel of that gorgeous bag. I wanted to ask if they were intending to bring the Mio out in the convex, and the lady assured me that they were – the company will be getting the first ones in the next two weeks, and they anticipate them being on the drug tariff (i.e. available on prescription) in the autumn. I am super-excited about this! I told the stoma nurse and she was pleased, and said I’d certainly be able to have these. The Coloplast rep said that until they were available on prescription she would be able to supply them to me free of charge, since this is a bag I definitely want, and they do not believe in depriving their customers of a bag if it is available but not yet on the tariff. This is great news! I shall be sharing it with my Camp Crappy friends because there has been some discussion recently about this – loads of people seem to want these bags, and not surprisingly – they are gorgeous.

It was a very, very good day. I never would have thought I’d get excited about such things but these days it certainly floats my boat! I am glad I went in knowing quite a bit about the different products, thanks to several months on the Inspire Ostomy Care forum (Camp Crappy – see links above) and from my own personal experience. While we were there we met some very nice and interesting people, both reps and visitors alike; I met one lady about to undergo surgery for a colostomy and I was able to tell her about Camp Crappy, and not to be afraid – she wouldn’t be alone, and there is a lot of help, advice and friendship (not to mention fun) on there, and I gave her this blog address.

One of the reps (unfortunately I can’t remember which company she represented) was intrigued by my wheelchair decorations and we got chatting about my blogs, and she expressed great interest in the Gutless Bag Lady. She said they do road shows, and if they were doing one locally, would I be interested in taking part? I said I’d be delighted. She said it was very much about stoma awareness, and she said her supervisor would be very interested in my blog – every now and again they feature someone’s story on their website/Facebook page. Great to spread the word!

Several of the representatives whose companies also run supply services confirmed that it is up to the patient to choose which company they go with, and they do not have to be tied to any one company. This is what I had been led to believe. Obviously they would all like one to go with their company but ultimately it is up to us, the patients, to go where it suits us best. The Salts MediLink rep said that they actually support and sponsor two of the stoma nurses at the hospital, and the nurses should not be dictating to patients where they must go – the thinking is that if you choose the storage bag you like, you have to go with the company that supplied that bag. I shall continue with the company “assigned” to me by the hospital for a while, but I do not feel obliged to stay with them if I feel I would like the freedom to choose elsewhere. I know one person who has tried several different companies and given them all a decent amount of business before finally settling with the one of his choice. Everyone I have spoken to about this has said that they have never heard of stoma nurses limiting their patients to only one company. The stoma nurse said to me today that all the companies represented at the open day were ones that the hospital had dealings with, and I was free to choose samples and products from any one of them – and surely this extends to using their delivery services as well. It’s no skin off the hospital’s nose, anyhow; all the companies supply all the products that are listed on the tariff so it really shouldn’t matter.

I am so glad I was well enough to go today. The past couple of days I have been feeling a lot better as the side effects from my first chemo treatment begin to diminish, and I want to take advantage of these “good” days.

A Good Stoma Clinic Appointment

The second of two posts for today.

This afternoon I had another scheduled appointment at the stoma clinic. I had spoken briefly on the phone last Tuesday with one of the specialist colo-rectal nurses about my problems with one of the HCAs and asked that I didn’t see her again, so I was a bit alarmed that she appeared to be on duty at the clinic today. I asked the receptionist who I was due to see, and he told me it was one of the CNS’s (Clinical Nurse Specialists) so I was relieved. The receptionist knew me by name, which was nice – but it does indicate just how much time I am spending in that place!!

While I was waiting, Dr. Johnston, the gastro-enterologist came through, and I had a nice chat with him, and while we were talking, my surgeon, Mr. Pullan, also turned up, wearing his scrubs! We all had a nice chat, and he said how well I was looking after my operation. I told them both about the six months of chemotherapy that I am facing and they both wished me well, and agreed that I have to look on it as a positive thing, making sure that all the cancer is gone for good. Nice to see my two favourite consultants!

My hubby was still parking the car when I was called in for my appointment. I was able to have a more detailed conversation with the nurse about the problems I had experienced with the HCA and she said she was sorry this had happened. I told her that I did not like to complain, but I felt it was important to let her know how things were, in case someone else was also affected, and I also had the opportunity to give her some specific examples. I repeated my request that I did not see that HCA again. I was glad my hubby was not there because this sort of thing makes him very uncomfortable (not that I enjoy it much either!) and he would much rather I left things alone and put up with it, but as I said to him, this is too important, and I need to have confidence in those who are caring for me, and sometimes things need dealing with, however unpleasant it might be at the time; in the long run, the benefits outweigh the temporary discomfiture. I feel very much better for having done it now, anyway, and the nurse was very understanding.

I then told her about the problems I’d had over the past few days. She took the bag off and said I still needed a convex bag. I told her how much I would like to go back to a flat one, because I so much liked the Coloplast SenSura Mio which is not yet available in the convex version, and she said that some people are able to use a flat bag again eventually, because after a period of time using the convex bag, the stoma gets pushed forward more, but it doesn’t happen with everybody. I said I didn’t mind, as long as I could have a decent convex bag, and I would certainly want to use the SenSura Mio convex if and when it was available.

She had another HCA helping her, who was also lovely and not at all like the other one! She made several trips to the cupboard for supplies for me, and the first convex bag they produced (can’t remember the name) I rejected almost at once, because the tail was horrible and it was a fiddle to undo, and like the OakMed one, it only had one rigid plastic strip so I could see myself getting output all over my hands again. The nurse suggested the Coloplast SenSura Convex Light bag – this is the convex version of my original bag, and I jumped at that one.

The tail is identical, and I really like this. It has the two rigid plastic strips, and when you press their edges together, the bag springs open beautifully, and I like the Velcro fastening wings too. This bag has a good viewing window, with the outer cover being divided so that you can lift it, and the top half of the bag under the cover is transparent. This is better than the Salts bag which was only transparent over the stoma itself. Another thing I like about the SenSura bags (flat and convex) is the fact that the edge of the flange is transparent, so you can see if a leak is advancing towards the edge, and deal with it in time.

The convexity is softer, and less pronounced than on my previous bags, and this is a good compromise between the rather hard and rigid deeper convex flanges and the flat bag.

One slight disadvantage is the paucity of measuring rings on the flange, which makes cutting it to size a bit more difficult, but the nurse gave me the backing sheet from the bag she put on me, to use as a template. She cut the hole circular, not worrying about the slight bulge on one side of Kermit, and said that it shouldn’t be too tight a fit, or the stoma might develop granulomas (small nodules which form as a result of friction from the bag) and these can bleed a lot. She cut the bag to around 28 mm.

I told her I was running out of some of my supplies, so in addition to supplying me with plenty of the new bags, she gave me a new pack of Conti wipes (these are the dry wipes that you can use either dry, or with water, and they are larger than a lot of the wipes supplied by the manufacturers of stoma care products, and you can cut them in half and get double the amount!), and plenty of barrier wipes (which the previous HCA had considered unnecessary!!).

I haven’t tried these Pelican barrier wipes, but my first adhesive remover spray was by Pelican and I liked that very much.

Finally, she gave me some more banana flanges to replace the few OstoMart ones I had left. I said I didn’t like those much because they made my skin itch (there are some small red spots where they had been) and she said she didn’t like them much either – a lot of patients had experienced skin irritation from them because they are far too sticky (even with adhesive remover spray they are very hard to remove) and do not allow the skin to breathe. She produced some by Salts instead.

These are thinner and more flexible, and although they look rather opaque when you first apply them, with the warmth of your body they become more transparent and adhere better than initially. They contain aloe vera and are a lot more skin-friendly than the OstoMart ones. Eventually I would like to get the Trio silicone ones through my supplier because these are a dream to use, but the nurse said they don’t deal much with Trio, because they only do accessories and the GPs are apparently pressing them to cut down on prescribing too many accessories. (The other HCA was just dismissive of Trio products and said, “We can’t stock everything…” and “I saw them at a trade fair and wasn’t impressed…”)

These banana flanges have backing papers on both sides. You remove the first one and apply the banana flange as normal, and then remove the top backing sheet, exposing a wafer-thin transparent strip which flexes with your skin and is breathable. I love these!

When the nurse removed my bag, she used plenty of adhesive remover spray without my having to ask her, and she peeled it off slowly and gradually, and I felt quite relaxed about it. She had no problem using barrier wipes either, but said the powder should only be used if the skin irritation was so bad that the surface of the skin was broken and moist, because otherwise the powder would not stick.

She said that we should now be thinking about getting a prescription set up for me, so that I can start receiving supplies via a home delivery service. I quite agreed, but said that things were still constantly changing, which was getting pretty boring! She said there was no point in setting up a prescription if the next week it had to be changed again! She has made another appointment to come in three weeks’ time, which will be on the same day as my follow-up appointment with Mr. Pullan, my surgeon, and hopefully by then, things will finally have settled down.

She warned me that the chemotherapy might affect the stoma – not necessarily its size or shape, but quite likely the output, which can increase in quantity and become much more liquid. She said I may need loperamide (Immodium) to help with this, but I said if I could correct the problem with jelly babies, that was preferable! (How I wish jelly babies were available on prescription!!) For the moment, the output is quite thick, which she was pleased to hear – although I did say I thought my blow-out this morning was partly due to pancaking because it was so thick!

As we left, both the nurse and the HCA were very sweet, and the HCA said, “Nice to see you again.” I said to my hubby on the way down, “What a great appointment! That’s how it is supposed to be!” I certainly didn’t feel like that on the previous two occasions! Coming out this time, I felt I had had a very positive experience, my questions and observations had been listened to carefully and responded to in a considered way; the atmosphere was friendly, and there was decent dialogue. Should be expect anything less?

My First Blow-Out!

The first of two posts for today.

Shoshi has ARRIVED! She has had her first blow-out!

I had major problems this morning. I woke to find my first blow-out!!! It was very thick, fortunately, and hadn't penetrated beyond my nightie, but it was on my right hand, and one very strange thing – I wear 2 silver rings, one on my thumb and one on the 2nd finger, and both these had gone a dark copper colour as a result of the reaction with Kermit's output, but I've polished it off with silver cleaner and all is well again. When I was in Iceland all my silver jewellery went black from the sulphur fumes constantly in the air there from the volcanic activity, but this was a coppery brown with a few patches of blue-black which looked like blued steel. Interesting reaction between digestive enzymes and silver!

The top right of the bag as I look down had blown out and there was a great splodge of poo sticking out! When I got up and cleaned myself up, I noticed that the moat around Kermit had returned somewhat – it’s worse at the top when I'm standing, where my tummy is sagging a bit forward. So I've gone back with a Salts convex bag again. Thank goodness I'm seeing the stoma nurse this afternoon, so I'll be able to discuss the problem with her. I'm also very glad that each time I've changed the type of bag I'm using, I have kept the remaining ones and not returned them to the clinic.
It's a real pain in these early days when everything is still shifting about and one's shape keeps changing!! Sometimes I wish I was Tin Man and had a nice rigid stomach to stick the bag to.

I think part of the problem was that last evening my skin was itching, not immediately around Kermit (although of course the skin is quite irritated again this morning) but I'd put a banana flange on (Ostofix large frame from OstoMart) and I really don't like them – they are hard to get off even with adhesive spray remover, and they do seem more itchy than the bag, and I had peeled it back a tad so I could have a good scratch, and the edge of the bag came up too – I pressed it all back firmly but the seal in that place may have been a bit compromised. Also, yesterday at lunch time my hubby made us a huuuuge cheese omelette (I keep on to him about portion sizes but he keeps giving me too much food, and I can't get over the childhood injunction to "eat up everything on your plate" lol!) and I think the eggs may have bound me up a bit. The poo was quite thick (good thing, actually, or it would have spread much further) and it had pancaked a bit, and a lot of it was at the top of the bag, and the pressure probably caused the blow-out. So I'm not 100% convinced that the SenSura flat bag was the problem. I was lying down, of course, so it had no reason to flow to the bottom of the bag and keep Kermit clear.

One amazing thing – as I woke up I was vaguely aware of a slight poo smell and thought it was drifting along the landing from my hubby's bathroom. There was barely any smell at all. I am now using a combination of a short spray of 3% hydrogen peroxide and a fresh mint tic-tac in the bag each time I empty, and it really does eliminate the odour!

I am hoping eventually to be able to have the Trio silicone banana flanges from my supplier – these are so fantastic. They have backing paper on both sides, and after you've applied the banana flange, you remove the top backing paper to reveal an ultra-thin, highly flexible and transparent flange which is practically invisible and which moves with your skin. Their silicone products are amazing.

More Bag Problems and Changing Body Shape

Over the past couple of days I started to get some itching again, and last night when we were out, it got so bad that I couldn’t wait to get home and take the bag off and see what was going on.

The skin was quite irritated again so obviously there had been some contact with output from Kermit E.G. Robinson. I cleaned the area thoroughly and applied some Head & Shoulders shampoo which I left in contact for a few minutes (zinc content very good for skin problems) while I measured Kermit again – he now about 28 mm in diameter with a slight bulge – and cut a new bag to size. Once the H&S was rinsed off I prepped the area well with stoma powder and barrier wipe, and applied the new bag.

Within a short time – after I had put all the stuff away, of course! – I realised that there was a problem with this bag too, and pressing on the flange, realised that it did not seem to be sticking down properly, so I got everything out again and took it off.

This time I examined Kermit closely, and the surrounding area, and noticed that the “moat” which had developed recently and which had caused so many problems with leaks, had virtually disappeared. The stoma nurse had given me some Salts convex bags to help with this problem, and they were no longer working properly.

I decided to go back to one of my original Coloplast bags, with a Hollister ring, and also added a banana flange on the side nearest my tummy button, where there is still a crease in my abdomen where the first leaks occurred, and was pleased that for the rest of the evening everything seemed to be OK.

It is now mid-afternoon the following day, and so far so good! The itching has disappeared, and there don’t appear to be any leaks.

I shall be delighted if this situation lasts, because of the several bags I have tried, it is the Coloplast that I like the best. Fortunately I had several left when I was transferred to the convex ones, and when I see the stoma nurse tomorrow I shall discuss this with her.

The Hollister ring is rather thick, and I was a bit concerned that together with the bag flange, it came all the way up to the top of Kermit and I thought he might leak underneath again rather than outputting straight into the bag. Ideally what I would like is to use one of the new Trio silicone rings with the Coloplast bag – these are much thinner and automatically shrink to the size of the stoma, providing a good seal. I shall see what the nurse says tomorrow.

I am particularly pleased because the original Coloplast bags I was using are now available in the updated model which I like even better, with their very nice new covers, and I do hope I shall end up being able to use these permanently, and eventually get my home delivery set up, with these, the Trio rings, and also the Trio banana flanges which are brilliant – really thin, and transparent too.

I want to get this all sorted out before I start my radical chemotherapy which is due to begin perhaps next week. (See the Cancer Diary page on my other blog for full details of that.) Once the side effects of the chemo kick in, I am sure the last thing I shall feel like doing is messing about with bag problems.

This is quite a rollercoaster ride, getting the right bag and accessories and a good fit – one minute I’m “up” and feeling we’ve finally got it right, and the next I am in the pit of despair and wondering if I’ll ever get this sorted! Eventually I know I will, and a year from now I shall probably be doing it in my sleep and looking back on this time with amazement. It’s just getting there that’s the problem!

The changes are due to my body settling down after surgery. The swelling from the operation is going down, Kermit is shrinking, and also my weight has been changing a bit. I lost about a stone (14 lb) in hospital, and then, when I came home, because my dear hubby will keep giving me delicious and tempting little pots of desperately fattening puddings, and the fact he needs continuous lessons in portion control lol – I gained about 7 lb! I also battle with the habit of “finishing everything on my plate” with which I was indoctrinated as a child – I hate waste! – if it’s on my plate, I will eat it!! Anyway, I am working on this, and so far have managed to lose a couple of pounds. I am not dieting as such; before the operation the surgeon had told me to hold off my diet until everything has settled down and I am better, because my body needs the nutrients for energy and healing; but I do want to eat as sensibly as possible and not undo all the good I did before. After he told me to stop the diet, and with the postponements in my surgery, I managed to gain 7 lb before going into hospital!

With all these changes to my body, the shape of my stomach is bound to be in a bit of a state of flux. The operation wound now forms quite a valley vertically down my belly, and I have noticed that I have developed a couple of “love handles” running diagonally downwards from my hip bones since the swelling has reduced – some internal bulk has been removed with the colectomy, and together with the weight loss, there is some sagging of my belly. Gravity, gravity, all is gravity… Maybe the NHS would be good enough to give me a tummy tuck if I tell them it’s for the benefit of Kermit E.G. Robinson? Hmm.. I don’t suppose they will! I thought it was jolly mean of the surgeon merely to laugh when I asked if he’d scrape out all my tummy fat while he was in there – all he said was, “No… I’m afraid everybody asks us to do that!” Shame.

Scheduled Stoma Clinic Appointment

Today I had my second scheduled appointment at the stoma clinic – the first one was a fortnight ago today and all being well, I should not have been back again until today, but because of the leaking problems I had last week, I had to have two extra emergency appointments to get sorted out.

On Thursday when I saw the HCA, she said they only had one type of convex bag in stock so I’d have to go with that (the Oakmed Hydrocolloidal Soft Convex bag # SC45 4120KV) which I wasn’t too keen on, and over the ensuing days, I did not change my opinion of this bag.

The opening proved a real pain, and I never managed to empty the bag and clean the opening without getting output on my hands, and I really didn’t like the closure. I was hoping that today she would have some different ones in stock for me to try.

They don’t have much choice in convex bags at the clinic. She produced the only other one they have: the Salts Confidence Natural Convex bag #XNDL 1338.

This bag has a shallower convexity than the Oakmed one, and it is slightly softer. As you can see from the photo, the flange is divided into sections so that it fits any skin contours better. It has a viewing window over the stoma but it is not quite so easy to see more of the inside of the bag as it was with the Oakmed one. I much prefer the closure on the Salts bag, though; being more like my original Coloplast bags, with the Velcro wings, and the Salts bag has a nice large Velcro patch to hold the closure when you want to tuck it up inside the lining, giving a nice smooth profile at the bottom so that it doesn’t dig into your leg – I hated this about the Oakmed one! The flange is impregnated with aloe vera for skin health, and the bag has a nice anatomical shape too. Finally, the closure has a stiff plastic strip on either side so that you can press the sides together to open the bag, like the Coloplast bag – this is going to be nice and easy to empty and clean.

As long as there are no leaks, this seems quite a nice bag and I should be happy enough with it, but being a convex bag, the flange is somewhat rigid. It has belt loops like the Oakmed bag and although the HCA suggested I use the belt, I don’t think I will as I didn’t find it that comfortable and felt much too trussed up.

I was a bit disappointed not to see a stoma care CNS for the second time running – in my experience they have been a bit more willing to listen to my opinions and wishes. Again, the HCA was quite dismissive of the Trio products and said they’d seen them at a product show last year and she “hadn’t been impressed.” She did not like the idea of them being non-absorbent – she said that with the absorbent hycrocholoidal adhesives, any effluent was absorbed into the product, away from the skin, but on the Trio website they emphasise the fact that if the effluent is absorbed by the product it is in contact with the skin for longer. Not sure what I think about this now! Anyway, I told her how very impressed I’d been with the Trio samples I had had, and how easy it was to fit the ring, which shrinks automatically to a perfect fit around the stoma. I said I liked the idea of using a ring because it made the fitting of the bag less critical, but she dismissed this saying that once my supplies were set up, the bags would be pre-cut anyway. In the meantime, she has cut the bags for me, to last until my next appointment on Friday week (8th May) and what I do if Kermit shrinks any further during that time, I am not sure.

When she changed the bag, I had to ask her again to use more adhesive remover spray because she really hurt me last time by using insufficient spray and pulling the bag off too quickly. It wasn’t quite so bad this time but I still winced a bit!!

She cleaned the area with water and wipes, and then simply dried it and put the new bag straight on. I asked if she wasn’t going to use a barrier wipe and she said no; if you use these every time, they build up and stop the bags adhering properly! This is certainly not what I have been told before (or read online), and she also did not use any adhesive remover wipes to remove any residual adhesive still on my skin. She said “less is more” and said that my skin was beautiful and shouldn’t be interfered with – to me, the irritation is a lot better than it was, but it is still there – it is still a bit red and there are a few little red spots. She said she likes to keep the whole process as simple as possible and use the minimum amount of different products, but I don’t mind how much stuff I use if the result is going to be better! The specialist nurses seemed to take a different approach.

This makes my appointments somewhat confusing. I know I am still very much a beginner and should bow to their expert advice, but when it is conflicting, and when it conflicts with the advice of seasoned ostomates (who after all are living with a stoma every day, unlike any of the professionals, and know what works from experience), it is often quite hard to know what to do. I do know that I should be free to try different things and discover for myself what works best for me.

I have my own views and opinions, albeit based on fairly limited experience so far, but I do know what I like, and what I feel confident about, and over my past two appointments I didn’t really feel that these views and opinions were sufficiently acknowledged, but were simply dismissed.

My preferred option is still to have a mouldable ring (if necessary, a convex one) topped with my original flat-flanged Coloplast bag (the updated one: new Sensura Mio One-Piece Drainable). A ring will allow a better seal and make the fitting of the bag less critical, whether or not it is pre-cut. I would feel more confident with that extra layer of security; I have had enough problems with leaks and skin irritation and do NOT want to go down that route again!!!

When the sample convex ring I have ordered from Trio arrives, I shall try this combination and see how it goes.

I am now getting to the stage when I can’t wait for my body to settle down to its permanent state post-surgery, and to be able to exercise more of my own personal choice as to what products I use, and get a home delivery system set up which suits my needs and desires.

When we got back, there was a message from CliniMed, whom I had contacted yesterday for samples, and we had a long chat about different products, and she is sending me a pack of things to try. I also contacted Salts for some of their samples (including a sample of the bag the HCA gave me today), and I have ordered a sample of the Trio convex flange. All of these samples should arrive in the next few days, and I shall be very interested to try them in different combinations. More news on this later.

Leeking Like the Welsh

Sorry about that…

Over the past couple of days I have been having a horrendous time with Kermit. My stomach has changed shape, Kermit has shrunk, and there is a definite depression around him as if he is being drawn into my abdomen. Starting yesterday at tea time I started getting acute itching in that region, and before supper I went up to change the bag and found it leaking along the crease from Kermit to my tummy button. I had put one of the new Trio silicone rings on in the morning when I changed the bag, and thought that perhaps it wasn’t forming as good a seal as it should. I had also applied one of their banana flanges, the the leak had penetrated up to the edge of this.

I immediately changed the bag, and the itching stopped for a while, but then it began again, and when I emptied the bag before bed, I noticed it had leaked again in the same place. I changed it again, this time putting on one of the new Hollister rings the stoma nurse had given me on Monday, and went to bed.

In the morning I got up to empty the bag and found it leaking badly on the other side, and this time (where there was no banana flange) it was leaking right out, all over my nice clean nightie!

I went into the bathroom and took it all off and it was a terrible mess. I thought I was really getting on top of the skin irritation problem but it was as bad as before with lots of little red spots. At this point I lost the plot and burst into tears, and could hardly see what I was doing… I called out to my hubby and he came running upstairs to find me sobbing with frustration and saying I couldn’t keep doing this… I couldn’t cope, and what on earth was going wrong?

He helped me as I put on another Hollister ring, and of the original bags I’d been given, thinking that perhaps it was the new version that I’d been given on Monday, and I patched it up well with the original banana flanges, and came down to phone the stoma clinic.

The tears were still very near the surface and appeared again as I spoke to the nurse. She said they’d ring me back, which they did a little while later, and asked me to come in any time before 4 p.m. and somebody would see me.

We had to stay in until 1 p.m. when the district nurse comes to do my Fragmin injections (only one left after today!!!) and we left immediately after she’d been.

We saw one of the HCAs on the stoma team and she had a good look at it. She removed the bag and looked at me lying, sitting and standing – lying down, the stoma looked fine, but as soon as I sat or stood, it seemed to retract into my belly fat.

She went to get a different sort of bag, and said she thought I needed a convex flange – this is a device which presses the peristomal area down, allowing the stoma to protrude more, so that it drains into the bag, and not under the flange.

Unfortunately, the new version of the bags I’d been using is a new design and the manufacturers have not yet produced a convex version, so she gave me another brand, this time from OakMed – their Hydrocolloid Soft Convex bag (SC45 4120KV).

This doesn’t have quite such a  nice closure, and it also has a double layer of plastic, making it rather difficult to get my mint tic-tac in the right section, and also to open the end when emptying, to put the loo paper inside to clean the opening.

This is what the convexity looks like from the side.

This is the opening seen from the other side. The piece stuck on is a flap with Velcro on it, which engages with the opening once it is rolled up (you roll it 5 times).

This is what it looks like closed.

Unlike the bags I’ve been using so far, this one has a soft cover on the front as well as the back, but there is an overlapping opening on the front so you can pull it apart to look through the plastic to see the stoma.

She cut it to size and put it on for me, and I put a tic-tac in, but of course put it in the wrong section, between the two plastic layers, so it did no good at all, and I couldn’t get it out later, because the bag had started to fill, and when I emptied it, it came away. I took more care about putting in the new one, to make sure it went into the right section.

The nurse said until things settled down, I was to stop using the Head & Shoulders shampoo, and the stomahesive powder, and the rings, and the banana flanges (unless I wanted the added security) – she said just to use a barrier wipe around the stoma after cleaning and drying it. So I am now back on a much simpler regimen for bag changing, and we shall see how we go.

She also gave me a belt to attach to it – it has little plastic loops to attach this to. You can see one of these on the second photo above. This belt is the most uncool thing out, and I feel a bit trussed up, but if it does the trick, I suppose I can put up with it.

I asked her about the Trio products and she said the box had arrived. She said they would not be able to supply them from the hospital because there were “so many suppliers and we can only use what’s in our cupboard.” I thought that was a shame, because if the product was better, they ought to be using it! She said I was free to get it myself, and I said I had been told by Trio that it was available free on prescription, and she said I was free to organise that through my GP. This is not the response I’d been hoping for – I thought they would have been a lot more enthusiastic about it! Certainly the stoma nurse I saw on Monday seemed very keen. It is such a new product and maybe more people need to be trying it and enthusing about it before the hospital starts to recognise that it would be a good thing.

I have now been wearing the new bag for several hours, and have emptied it once, and so far there are no leaks, so perhaps this is the solution. I am disappointed because I liked the other bags and I am not keen on the belt, but this may not be a permanent solution; she said that in the first weeks and months after surgery, things have to settle down and the body undergoes a lot of changes, and maybe one day I will be able to go back to a flat flange again. I suppose I’m just not that keen on all this chopping and changing!

When I started on this road, I thought I was doing so well, and it all worked like clockwork and I had no problems. Then the skin irritation started, and then the horrendous leaks, and I began to despair and feel really, really frustrated, and very scared that I might never get a handle on this. I have been to the stoma clinic three times in ten days and it’s awful for my hubby too – he’s worried when I don’t cope well, and he’s got to take me to the hospital all the time, and we’ve got enough hospital appointments scheduled as it is, without all these extra visits.

This morning I had changed the bag four times in 24 hours, and was so desperate that I wanted to phone the hospital lab and ask them to find my bowel, cut out the cancer, and sew it back in again so that I could go back to being the happy butt crapper I was before! Still, no good wishing such things, is it.

Onwards and upwards… Somehow we’ll conquer this, or I’m a Welshman.

Stoma Clinic Appointment

I phoned the stoma nurse this morning because over the weekend, I noticed that my stomach was changing shape as the post-op swelling was going down, and a crease had developed between my tummy button and the stoma. This was causing the flange of the bag to crease, and I had a slight leak.

The stoma nurse told me they’d had a cancellation, and I could go in in the afternoon to see her. She had a look, and agreed that there was now a crease, and gave me some banana strips (or flanges) (also known as smilies) to stick around the edge of the bag flange to ensure against leaks. These strips are very thin and flexible.

She gave me two sizes, but fitted me with the larger one while I was there.

The banana flanges have more than one piece of backing paper, and you remove them one at a time, to make the flanges easier to handle and place accurately.

She also gave me some new rings to try. These are made by Hollister and she thought they might fill the gap a bit better. So far, so good, with this, and the banana flange!

I must say I do find these mouldable rings very difficult to manipulate. It’s difficult enough getting them to the right size and shape to fit your stoma, but when you press them down, they stick to your fingers and distort when you try to let go! In the end I used the backing sheet to press with, but I still ended up with rather a lumpy result. Another problem I am experiencing is that now the stoma is shrinking, it is not doing so evenly, and is now oval in shape, with a small projection at one side. I am hoping this will all settle down eventually, and become nice and round again, but in the meantime (made worse because I’m still very much a learner driver!) I am struggling to get a good fit with the bag and ring.

The nurse said that there was a bit of bleeding from the small projection – you often get small spots of blood when cleaning the stoma, and this is quite normal, but she said this little projection was a bit more vulnerable, so she cauterised it for me with a small drop of some chemical – I didn’t feel a thing.

She asked me how I was getting on with the bags I’ve been using, and I said I really liked them, particularly the way the bottom folds up and is secured with velcro, and you can tuck the fold up into the cover. She said that Coloplast had brought out a newer model of this bag, which I might like to try – the fabric is even better and more comfortable against the skin, and once I have the ones with the opaque cover on the front (instead of the transparent ones the hospital supplies), this cover does not snag on your clothes. The flange is very thin and flexible at the edge (much more so than the older model) and the whole thing feels a lot softer. She gave me several to try. I certainly like the look of them, and will try one at my next bag change tomorrow.

When I saw her last week, she brought in three carrying bags so that I could choose one. These bags are for taking your ostomy supplies in when you are out and about, and are provided by the various supply companies who do home deliveries of everything you need, all free on prescription – the bag you choose determines which company you will be dealing with long-term. I chose this bag.

It has lots of zipped compartments, and a large main compartment, with pockets for small items like adhesive remover, small air freshener spray etc. etc. Here it is opened up.

You can see my Vanish stain remover pot on the left – it has some ziplock bags inside, for emptying my bag if I’m caught short away from a loo! Also a pack of dry wipes. You can just see the pocket at the back, and there’s another one inside the front, as well as one on the outside at the front. The larger pocket on the right has a small towel in it for spreading over myself when changing the bag. On the flap there is a mirror – handy for lining up the bag correctly over the stoma, and you can just see above that, a metal hook, and a cord with a clip on it – this gives you a choice for hanging the bag if you haven’t got anywhere to put it down within reach. They seem to have thought of everything. The bag is very well made, and ideal for the purpose.

It is supplied by a company called Patient Choice. I am very glad that I chose the bag provided by them, because they are the only supply company that runs on a non-profit basis. They plough all their profits into stoma care and inflammatory bowel disease charities, and even run a service for collecting unwanted ostomy supplies for redistribution in the third world. I am very happy to be part of that!

The nurse said she would like me to keep the appointment we had made for a week today, so we can discuss how I’m getting on, and check that the skin inflammation is improved – I think it is getting better now, with the Head & Shoulders treatment, and also the application of the stomahesive powder and the barrier wipes. We also discussed an interesting new product (the subject of my next post) and by next week I will have had a chance to try it.

My First Leak, and Progress on Skin Problem

My tummy seems to be changing shape. It’s probably the operation swelling going down. There seems to be a crease developing between the stoma and my tummy button, and this morning I sprang a leak along this line. I had just emptied the bag in preparation for changing it, and was walking across the bathroom to get my towel and I felt something wet – and it had gone on my nightdress and onto my foot. Fortunately the bag was empty so it wasn’t a serious leak.

Removing the bag, the skin irritation seems to be somewhat reduced, although still far from cleared up. The stoma itself has shrunk a little, and now has a rather irregular shape which is a pain. Having the mouldable rings the stoma nurse gave me helps but it’s quite difficult to get a perfect fit. I am hoping that when the stoma eventually settles down to its final size, it will also settle down to a perfect circle!

This morning I tried to shape the mouldable ring to the stoma, and put on a new bag. There is definitely a crease and some wrinkling around the flange on the left, and I am going to phone the stoma nurse tomorrow morning (why do problems ALWAYS arise at weekends??!!) and see if she can supply me with some banana flanges (also known as smilies!) – these adhesive strips give added security around the perimeter of the flange.

Just when you think you’re getting there, another problem crops up! However, it’s early days, and things are still changing and settling down, so I must expect some interesting days ahead!

Dealing with the skin problem – I was quite confused about the order in which one should apply the different treatments, so last night I went on the Ostomy forum on Inspire and asked for clarification.

I was told that the first step after cleaning around the stoma, is to apply some basic Head and Shoulders shampoo (without conditioner) in a thin layer with my fingertip, and allow it to sit for a few minutes. Then rinse off thoroughly with wipes and warm water, until every trace is gone. Next step to dry the area thoroughly. Then apply the stomahesive powder, brushing away the excess so that the only powder remaining is that attached to the inflamed areas of skin. I was confused about when to use the barrier wipes, thinking that if you wipe the area, it would wipe away the powder, but I was told not to wipe, but to dab with the wipe – when you hear “wipe” you think “wipe” not “dab” lol!! Anyway, gently dabbing at the area applies the film on top of the powder, allowing the crust to form, which acts as an artificial scab which protects the skin and allows it to heal.

I tried this this morning and it seemed to work well. After ensuring that the area was completely dry, I applied the mouldable ring and eased it into shape around the irregular stoma, trying not to leave any gaps. Then I applied the new bag.

When the district nurse called today to give me my Fragmin injection I told her about the problem, and she had a look and could see the definite crease in my stomach, and how the bag flange was folding along it. She said it might be a good idea to go back to changing the bag daily to prevent a leak developing – with the aid of the adhesive remover, there is very little pulling on the skin, and even if there were, it would probably do less damage than further skin contact with stoma output. It’s all a question of balance.