More About Convex Bags and Support Garments

This morning I saw the support garments lady at the hospital. I took in with me the wrap and pants I’d got from SupportX online some time ago, and she shook her head at them and said that neither was giving any real support at all, which I was pretty much aware of. I told her that the wrap kept rolling up at the back and was not wide enough top to bottom.

She suggested a proper belt with a Velcro fixing, and got several out for me to try, but again the back rolled up, and she said they were not really suitable for me, and that I’d be better with support briefs. These garments are all specifically designed for people with stomas.

We tried a pair of these and they were much better. They are made of very nice firm smooth stretch fabric and she said they would offer sufficient support to help prevent a hernia developing. Hernias are very difficult to treat and the operation is not always successful, and prevention is very much better than cure, and even though the support garments are expensive, they are a lot less of a drain on the NHS budget than a hernia operation.

She has ordered one pair for me to start with, and after a week or two, if they prove satisfactory, I can phone the number she has given me and they will order 2 more pairs. I am allowed 3 during one year, and she doesn’t want to waste my prescriptions by giving me 3 all at once, in case they aren’t right for me, but I think they will be fine.

On the subject of convex bags, after I spoke to the Coloplast rep at the open day back in June, I was told that I would be contacted once the new Sensura Mio convex bags were launched, and I would be sent some samples to try. I was told this would happen in the autumn. Not having heard anything, I phoned in October and was told they would be launched in November. I then heard that earlier this month someone on the stoma forum on Inspire had already got her samples, so I phoned again, and was told they would phone me, which they didn’t.

I phoned again last Friday and was told that someone would definitely phone me on Monday (yesterday) – they need to speak to you so they can fill in a form, getting information from you about the size of your stoma etc. so that they can send the correct samples out.

At 4 p.m. yesterday they still hadn’t phoned, so I rang them again and I was told that no way would I have been phoned yesterday because each request took 24-48 hours to process! She wanted to know who I’d spoken to, and of course I couldn’t remember his name… She could find no evidence that I had phoned at all! Honestly, I do get fed up with these firms that pass you from pillar to post and nobody will take any responsibility, and all they can say is, “They shouldn’t have told you that…” as if it is my fault!! I said I’d been waiting a long time, and had contacted them repeatedly, and I was anxious to get my samples asap as I wanted to be able to order them with my next order from my supplier if they were suitable, and I’d been deliberately running down my supplies. I told her yet again which days I’d be in and when I wouldn’t be available this week (I have 3 hospital appointments 3 days running) and she said she’d try and push for a phone call this morning (Tuesday) before we left for the hospital for my support garments appointment. Of course, there was no phone call.

She told me I might not hear before Friday! I told her that was a whole week on from when I’d first phoned them asking for samples. I really do think this is pretty shabby and I told her so.

I wouldn’t be a bit surprised if they phoned tomorrow when we are out. I wouldn’t put it past them…

I know they are inundated with requests for samples of these new bags, but I have been on the list to receive them since June, so surely I can hardly be considered to be at the end of the queue. I am wondering if I’m ever going to get them!!

Tomorrow I am going in to the day surgery unit so that my surgeon can examine my rectal stump under general anaesthetic. When I saw his registrar at the end of October he couldn’t see much because it was full of muck and pus, and it was rather uncomfortable having the proctoscope in for any length of time, so he said he would discuss it with Mr. Pullan who would probably want me in for a fuller investigation. I have to be there for 8 a.m. having had no breakfast. I should be home by lunch time, depending on how things go, and how soon I am over the anaesthetic and able to leave.

On Thursday I have my CT scan, and on 27th, bloods to be taken at the Ricky Grant (chemo) unit. On 30th November I am seeing the oncologist after she’s received the results of the scan and bloods, and I am hoping for the cancer all-clear! I counted up all my appointments this year since my diagnosis in mid-January, and up to and including the oncology appointment at the end of this month, the total is 49!!

Stoma Clinic Appoinment–Bag Advice and Support Garments

Recently I noticed that where the convex flange of my Coloplast bags sticks to my abdomen, it has been making the skin a bit red, and now that the moat has disappeared from around Kermit, I wondered whether perhaps I still needed to use convex bags, or whether I could return to the flat ones, so I contacted the stoma clinic and they arranged for me to come in and see someone after I had seen the surgeon at the hospital this morning about my rectal mucous discharge (see my Cancer Diary entry today for details of that appointment), as it was in the same department.

I saw Nita this morning, and she had a look, and said that my skin continued to look very clean and healthy, and that all was well. She said that Kermit does not protrude very much – we laughed when we reminisced how freaked out I’d been before my surgery, by the stoma clinic’s DVD with the young lady with the red willy on her tummy and how I’d asked Mr. Pullan NOT to give me one of those!! – but sometimes a bit of protrusion is no bad thing! She said that I should continue with the convex bags for now, but there may come a time when I could return to the flat ones. I do not mind either way, as I am happy with the Coloplast soft convex bags, and am awaiting the arrival of the new Mio convex bags – I just wanted to be sure they were still happy with how things were, so I was reassured. The main thing is to avoid the possibility of leaks, and if the stoma doesn’t have a very long spout, the convex bag does make it protrude more, so that the output is sure to go into the bag, and not seep out under the flange and start irritating the skin.

She said I had done the right thing, coming in to ask. If the skin redness gets worse, then it might be time to look again, but probably there wouldn’t be likely to be any change during the next two or three months.

When she removed the bag, she remarked on the banana flanges I was using and asked if they were the Trio ones, which I confirmed was the case, and how much I liked them. They are their Silex Flange Extenders.

I was also able to report that I was getting on very well with Patient Choice, my supplier, and how businesslike they were, emailing me as to when to expect my parcel to be delivered, etc. She was pleased to hear that, because she said that not all companies were that businesslike.

We also spoke about support underwear. I mentioned to Nita that I had been experiencing a bit of pain around the stoma and in my abdomen lower down, but that the surgeon had reassured me that there was no evidence of a hernia. People with stomas are much more at risk of developing hernias because their abdominal wall muscles have been compromised by the cutting of an opening, and support garments are a good idea to prevent hernias developing. The surgeon said the pain I had been experiencing could just be the development of some scar tissue – there may be some adhesions, especially as I have also had a hysterectomy (20 years ago) and there’s been a lot going on in that area, but it was nothing to worry about. Nita could see that the rather large SupportX pants I had on were doing very little in the way of support; even if they were smaller, the fabric was not particularly firm or stretchy.

A few weeks after I received the two pairs I’d ordered from SupportX, they sent me another two, which have remained in the drawer still in their original wrapping, so I took them in today and gave them to Nita to put in her cupboard in case anyone else wanted to try them.

She said we could do better than this, and suggested I came in to see the lady who does the girdle fitting, so I have an appointment on Tuesday 17th November in the afternoon.

Nita said that they were getting very good reports of the support underwear now available in regular clothing shops such as Marks and Spencer’s, Matalan and PriMark, and they were not expensive. She said in the meantime I could try those, so after my appointments at the hospital we went off and I got a couple of pairs of pants (they only had two in my size, but they will keep me going for now).

You can see that there is a lace panel on the front. The fabric the pants are made of feels very firm and stretchy, and I think they will offer a lot more support than the SupportX ones.

I told her that the SupportX wraps I’d been wearing at night were a perfect pain because they are not deep enough and keep rolling up at the back.

In SupportX’s picture it looks nice and deep but on me it seems about 2/3 the depth!

She said the girdle fitting lady should be able to provide me with something better, and in the meantime I told her I’d ordered some cheap pregnancy body bands from Ebay which I thought I would try.

These look a lot more generous! They were very cheap, so I hope they will be stretchy and supportive enough. They are supposed to support one’s back as well as one’s abdominal muscles, but we shall see.

Another advantage of these garments (and my main motivation for waning them originally) is that they hold the stoma bag in place so that it doesn’t flop about – this was something that used to bother me quite a lot at night. During the day, they help maintain a smoother profile so that the bag doesn’t show so much through one’s clothes.

Obviously I have had to pay for the belly bands and the Matalan pants myself (the were not too expensive either - £6 per pair), and I bought two pairs, intending to wear them over my regular underwear as I have done with the SupportX pants), but anything recommended by the girdle-fitting lady or the stoma nurse, manufactured specifically for stoma care, should be available on prescription. The products designed specifically for stoma care use often have a separate pocket to contain the stoma bag, keeping it out of direct contact with the skin, which obviously normal support garments available in regular shops do not.

This whole thing continues to be a learning curve! An interesting one, though. I have found the whole process both fascinating and educational!

Part of the problem is having to shop online for certain products, and not being able to handle them to see how stretchy and firm they are, and not being able to try them on. The advice of the stoma nurses is extremely helpful, though, and I am sure the appointment with the girdle lady will be informative and useful.

I offered my services as a volunteer to help anyone wanting to speak to someone who has a stoma, and she was happy to put me on their list. We had a chat about what it is like for people in the early days – I reminisced about my tears on the phone and in the clinic, when I felt totally unable to cope, and wanting to phone the hospital lab and ask for my colon back (minus the cancer!) so that it could be sewn back in and I could resume my life as a butt crapper!

There are times when one thinks one will never get to grips with the bag, as one’s body changes shape and the stoma shrinks, and you get leaks and skin irritation. All being well, and in the absence of other complications such as prolapses or hernias, suddenly things slot into place and one starts managing like a pro, and it just becomes part of one’s daily routine. I said how very comforting and reassuring it had been during those difficult times, to phone up (usually in a bit of a state!) to be told to come in and they’d fit me in, and they always managed to sort me out, calmly and efficiently, putting my fears to rest. She said that this was the bulk of their work, helping people out in the early days and teaching them how to manage, so it’s all in a day’s work to them! They are the unsung heroes of the colo-rectal world!

I hope anyone reading this, who is struggling through the early days, will be encouraged and reassured. It really is not that bad once you get used to it, and always remember that the stoma nurse is your best friend!

Do I Need to Change to a Different Bag?

On Friday I phoned the stoma clinic to see if they could fit me in on Thursday morning when I am due to see Mr. Pullan about my rectal discharge. They promised to phone me back but were very overstretched and understaffed, and I didn't hear anything until today. They say they can fit me in, and all I need to do is tell reception when I arrive, and they will be available once I come out from seeing Mr. Pullan. None of it should take too long.

The reason I want to see the stoma nurse is that recently I have noticed that my body has changed shape again and the moat around Kermit seems to have disappeared. Where the convex flange of the bag sticks onto my abdomen it is now leaving a reddish mark - not sore or anything, but it may be indicative that the bag is now putting undue pressure on my skin, and it may be that I no longer require a convex flange. I need to see the stoma nurse so she can have a look at it, and she will know whether I can return to flat-backed bags. It is now 7 months since my operation and I thought my body had stopped changing shape, but apparently not!

I have also noticed with the last two bag changes that there had been a bit of seepage of output underneath the flange. I am surprised there was no skin irritation, but it has been fairly thick output recently, and that may be something to do with it. I shall tell the nurse about this and see what she has to say.

When I spoke to the nurse on the phone today, I mentioned that I would like to go on their register of volunteers who are willing to meet with newbies and encourage them through their initial stages, pre- or post-operatively. I am managing so well now, and although I'm only seven months into my stoma journey, I know that I can encourage others on this path, and reassure them that it will get easier, and help them to come to terms with having a stoma. It is a huge change, and can be very frightening and daunting, but once one gets through the initial teething problems, there is no reason why one cannot live as full and normal a life as one did before.

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!

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.

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.