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!

Naughty Kermit

Last week Kermit (my stoma) decided he was fed up with his goodie-two-shoes image that I’ve been putting about, saying what a good little stoma he was, and how well behaved he was. While I was still in bed I realised that a leak was imminent – I could see it creeping under the banana flange – these are flange extenders that give you a bit more security as they increase the area of protection around the bag, and can give you a bit more time to deal with a leak.

I got up to deal with it immediately, and as I started moving, the other side of the bag (with no banana flange) failed and started to leak – I staunched the flow with loo paper while I emptied the bag and prepared to change it for a new one.

The reason I’ve been having leaks (and much less since using convex bags) is that my body is continuing to change shape, and I’ve developed a crease on the right hand side of the stoma as I look down, and this is the danger area, so I always use banana flanges on that side. I am looking forward to the new Coloplast SenSura Mio convex bags to come out – the Mio bags have a very soft flange that moulds itself well to your body, and I think this will help me a lot in leak prevention.

Next time I order from my supplier I am also going to order some of their Silex silicone flange extenders which are extremely thin and flexible and the best banana flanges I have sampled so far.

I much prefer to choose my bag changing times when Kermit is not active – doing it to deal with an emergency usually means I have to deal with a leaky stoma while trying to clean up and get the new bag on.

When I took the bag off, Kermit did behave himself very well and I thought I was going to get away with it, but suddenly he erupted like Mt. Vesuvius and sprayed brown liquid down my leg and onto my slipper, onto the storage tower where I keep all his equipment, and down the bathroom wall! This is what is known on the Inspire forum as a “Code Brown”! This is the first time it has happened to me, and I am just glad that it happened at home, in my own bathroom, and not while I was out and about! I have read horror stories on the forum of people having to deal with major eruptions in the middle of business meetings! I always go out with an emergency bag changing kit, and a change of clothing for my bottom half but so far so good!

The only other problem I have with Kermit is wind – the bag can blow up like an airship at times! These bags have a carbon filter which is supposed to allow gas to escape without odour, but I don’t find they work at all. One bag I tried did seem to release a smell (the bag deodoriser I was using) but the bag still blew up. People on the forum generally say they are not happy with filters and often enquire about bags without filters, which seem to be few and far between.

When ostomates get gas, just like with butt crappers, the gas makes a noise when it escapes! While I can no longer fart like a butt crapper, Kermit does make some very interesting noises at times – nearly always when we have company! He knows. Stomas are like children and animals. They always let you down at the wrong moment! The other day I had a visitor and Kermit made a prolonged, high pitch whistle! At other times he makes little froggy croaky noises (hence his name). When I’m on my own he’s usually as quiet as a mouse.

The joys of life with an ostomy. You have to see the funny side and just deal with it. I always tell people, and make a joke of it if he makes a noise. Everybody who knows me knows what has happened to me this year and it’s no secret, and everyone is very understanding. If I’m in a public place with strangers, I just say, “Don’t mind me – it’s just my stoma making his presence felt!”

Pelican Select Convex Drainable Pouch–Product Review

After attending the recent stoma open day, I received a sample pack from Pelican, of three of these bags. Their representative phoned me the other day to see how I got on with them, but at that stage I hadn’t yet tried them, but promised to do so and let them know how I got on with them.

I told her that I was already using the Coloplast SenSura Convex Light bags and once they bring out the SenSura Mio in the convex, that will be my bag of choice, and I felt I should tell her that up front. She said that was fine, and they appreciate any reviews of their products because such feedback always helps with improvements in the future.

I put on this bag on Thursday so I have now been wearing it for two days, and I must say I am generally very impressed.

The convex flange on this bag is very soft indeed, and the backing sheet on it protecting the sticky surface is thin and flexible, with good measuring guides for cutting the hole to size. It is the easiest bag I have ever cut – really soft and effortless.

The sticky surface, called “Skin Protector,” is quite thick compared with other bags I have tried, and it has a foam back, which is extremely flexible. What impresses me most, apart from ease of application and comfort during wear, is that I have experienced no itching at all. On day 2, wearing the Colopolast bags, I do experience some itching under the glue; it’s not a major problem and isn’t caused by any reaction, and there isn’t any evidence of redness or the skin breaking down when I change the bag, but it is an indication that I will soon need to change the bag. With the Pelican bag, however, it has remained very comfortable and so far there is no itching at all.

The bag itself has an “anatomical” asymmetrical shape which is comfortable to wear, being curved on the outer edge so that it sweeps away free of one’s leg. The capacity of the bag is, I think, somewhat larger than the Coloplast bag. The cover is beautiful – it has firm feel to it which I knew would be unlikely to go fluffy with contact with one’s clothing after a day or two, as I have experienced with one or two sample bags I’ve tried, and this has proved to be the case. I am also very impressed with its opacity. The Coloplast bag, while it does have a flesh-coloured opaque cover on it (which again does not go fluffy), you can see the stoma output through it because it is rather thin, but with the Pelican bag, the cover is thicker, and nothing is visible.

It has a split in the middle, underneath which is the clear bag, and you can view the whole of the bag through this, and not just a “port hole” around the stoma, as with another bag I tried. It is very easy to see exactly where to place the bag over the stoma. (On this photo, you can see the thickness of the flange.)

The opening on the tail more closely resembles the Coloplast bag than any other I have tried, with the triple fold-up, and the winged tabs which are pressed down over the folded tail and held in place with Velcro.

I still like the Coloplast one the best, with its two rigid strips – the one on the underside of the bag is located below the one on the top, which means that when you empty it, there is a “step” that the output goes onto before draining away, and I find this easier to wipe with some folded toilet paper wrapped around the end of the bag, without getting any output on my hands. The Coloplast bag tail opens a lot more easily too, because the rigid strips are slightly stiffer, and you just press the sides together and it pops open. With the Pelican bag, the rigid strips are one directly above the other, and you squeeze the sides together to make a “U” shape:

and then pull on the little tab to open the upper layer towards you, which is a two-step process, and I find it doesn’t always work very well, especially when it is wet, because it tends to stick shut.

I couldn’t show a full demo of opening the bag because it required two hands and I needed one to hold the camera!

There is a very effective “fold up” system after you have closed the tail. As with the Coloplast bag, there is a Velcro dot under the opaque cover.

Once you have closed the tail, you fold it up, and stick the exposed Velcro strip between the two tabs, to the Velcro dot, and this holds the tail in place under the cover.

It folds up higher under the cover than on the Coloplast bag.

This is a good thing, because with the weight of the output, I do find that the Coloplast bag tends to sag at the bottom, and while it is still attached to the Velcro dot, it falls down below the cover and flops outwards.

The Velcro dot on the Pelican bag is also slightly larger, and has much tougher Velcro hooks on it, so is more effective. However, yesterday (1st full day of use) I noticed that the dot had come unstuck from its adhesive and was stuck on the tail, leaving the adhesive behind under the cover, and the cover has stuck firmly to it and is quite immovable, rendering the fold-up system useless; I don’t know if this is a one-off, and that it won’t happen with another bag, which I will have to try and see. Ed. 16th June after trying another bag: It is clear that body warmth softens the adhesive on the Velcro dot, which makes the Velcro dot slide off, exposing the sticky surface on the inside of the cover, which then adheres firmly onto the clear plastic lining of the bag. The two cannot be pulled apart without risking tearing a hole in the plastic bag. This renders the tucking up of the tail impossible because the cover remains stuck to the bag in the centre. This is a design fault which needs to be rectified – they need a different adhesive for the Velcro dot.

I am not convinced that the filter on the Pelican bag works very well; it is obviously letting some gas out (and I do produce quite a lot of gas!) because I am getting some smell from the bag. Fortunately it is merely the smell of the excellent OstoMart mint deodorising drops sample that I got at the open day – but I have never smelt anything from any of the other bags I have used. The gas is not dispersing fully, either; I still have to burp this bag to get rid of it. Ed. 16th June: To prevent any smell getting out, I have now covered the filter with one of the circular stickers they provided with the samples.

To be fair, I’ve never been convinced by filters on any of the bags I’ve tried; there is no evidence that any gas has escaped at all – odour or otherwise!

In summary, I must say I am very impressed indeed with this bag; the only drawbacks are the filter and the closure, and the failure of the system to tuck the tail under the cover, but these are minor gripes. The quality of the bag is excellent and once it’s on, you can forget it. I would definitely seriously consider choosing this bag above the Coloplast, but I am anxious to try the new Coloplast convex SenSura Mio as soon as it becomes available, and if it works as well as I am expecting, that will be my No. 1 bag of choice.

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.

Early Days

For full details of my hospital stay, please see my main blog (Cancer Diary page). I have now been home exactly a week, and my convalescence is going well, albeit slowly. I keep being reminded by everybody (professional and lay) that I have undergone major surgery – a very serious operation – and that recovery is not going to take place overnight; it will be baby steps, and a long and slow process involving lots of rest.

In the early days after surgery, the nurses took care of my stoma bag for me, emptying and changing it. At this stage I wasn’t too aware of what was going on, and the output was fairly minimal, and very liquid. Once I had been on the ward for a few days, the stoma nurse started visiting on a daily basis, coinciding her visits with those of my hubby, so we could learn together.

My initial thoughts were that I would come round from the operation and at the first sight of this aberration on my abdomen, would freak out and say “Get that thing off me!!!” but contrary to expectations, it has been far less freaky than I’d expected. I think a lot of this is due to the fact that during the delay in my admission caused by so many postponements, I had plenty of time for online research, and I gained a huge amount of support and information from the Ostomy Support Group on Inspire, and I so steeped myself in the weird and wonderful world of those who crap out of the front instead of out of the back, that it gradually became more normal for me, and very familiar.

The stoma management training was excellent. The first time, the stoma nurse simply did the whole thing in front of us, explaining each step. She gave us a printed sheet with instructions, and a list of supplies needed for each bag change. She said it was a good idea to get everything out ready before one starts, and I have followed this advice ever since.

The next day she encouraged me to do it myself, under her direction, and my hubby helped, passing me things as I needed them. The next day he and I did it together, and then he did a change all on his own – it is very good that he has wanted to be involved right from the outset, and we know that if I am having a bad day M.E.-wise and don’t feel up to dealing with it, he will be able to do it for me.

I was soon able to get myself to the loo and empty the bag myself. To start with, I sat myself on a chair in front of the loo and then emptied the bag, and continued with this, sitting on my shower stool, when I came home, but then I got to thinking that if I am out and about, I cannot depend on there being anything in the loo to sit on, unless I’m using my wheelchair, and I started sitting on the loo itself, with the seat up, to allow more room, sitting well back, and emptying. This has proved very satisfactory and is now my preferred method.

To start with, the smell really freaked me out. I am a naturally fastidious person who hates nasty niffs and bodily mess – I would have been hopeless with babies lol!! One of the nurses helping me in the early days suggested doing what they all do – they have to deal with horrible smells coming from patients all the time, and she said they just breathe through their mouths! I started doing this and it wasn’t so bad. However, the smell can linger in the bathroom.

Before I went into hospital I researched this aspect on the forum, and learnt about a wonderful product called “Deja Poo” – it is a spray which comes in a beautifully labelled bottle and you spray the surface of the water in the loo “before pooing” and this deals with the smell! The fragrance I chose is called “Poo Pourri” (lol!) and has a delightful light, lemony smell; they are fragranced with natural essential oils.

You can see from the picture how beautifully packaged this product is. I bought both sizes – the small one will go in my travel kit. Each comes with a dear little metal charm and I am saving these to go in my art supplies. Different fragrances have different charms.

There are various products available to spray or drop into the bag after each emptying to deodorise the output, but someone else on the forum suggested popping in a single fresh mint Tic Tac and I have been doing this, and this tactic, alongside the Deja Poo, is really working, and I no longer have to breathe through my mouth!

When emptying the bag, it is necessary to clean around the opening with toilet paper. It occurred to me that since this was not coming into contact with my skin, it would be unnecessary to use the posh expensive luxury soft paper I regularly use, so I have bought in a supply of Tesco’s el cheapo soft loo paper and have a second free-standing holder beside the loo for stoma use. You do get through quite a bit and this is a real money saver!

Since coming home, my stoma is settling down nicely. I have been on a low fibre, low residue diet to allow the operation wounds to heal and for the internal swelling to subside, but the stoma nurse has advised adding small amounts of fibre to my diet now, to see how I get on. The output is a healthy porridgy consistency and apart from a couple of nights with excessive wind, when I thought I should either float up to the ceiling, or explode like the Hindenberg! – I have learnt how to “burp” the bag without emptying it – things have been going well in that direction.