Devon IA AGM at Kennford

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.

The Ileostomy and Internal Pouch Support Group (IA), formerly known as the Ileostomy Association, of which I am a member, had its local AGM at Kennford in Devon on 5th March. These meetings are always good to attend because you get to meet up with others in the same situation, meet old friends and make new ones. There is always a good exchange of ideas and experiences, both informally, chatting over coffee and lunch, and through discussion in the more formal part of the meeting. They have a table where you can put unwanted supplies, and take whatever you need, and they have the usual raffle and sometimes a quiz. There is usually a visiting speaker.

On this occasion we had a colorectal surgeon from the Royal Devon and Exeter Hospital in Exeter, speaking about hernias. A parastomal hernia is a very common problem indeed with ostomates, particularly people with a colostomy, and especially if they are older, and overweight, and being a smoker puts one at greater risk – the incidence of parastomal hernias is quite high, because the abdominal muscle wall is compromised by cutting a hole through which the intestine is brought out to form the stoma. He spoke about the problems of repairing them and how the risk of recurrence is high, and other measures that can be taken to prevent them developing. Some surgeons are now inserting a mesh around the stoma when the stoma is first created, and while this does strengthen the weak point, if further surgery is required (for instance if the stoma is reversed, or there are further abdominal problems requiring surgery) the presence of the mesh makes it a lot more difficult to operate. He spoke about synthetic meshes and also the use of pigskin!

A hernia can develop even through a simple activity like coughing or sneezing! In order to prevent hernias developing one should avoid heavy lifting, and if one has a severe cough, support one’s abdomen when coughing. There are various support garments that can be worn as well, but he said that these are more useful after one has developed a hernia than in prevention, although my stoma nurse did refer me to a fitter of support garments as a preventative measure.

He spoke about the anatomy of the abdomen and the different muscles involved. He said that in recent years, surgeons have tended to site stomas more towards the midline than before, and this could help in hernia prevention over time; being sited more towards the side of the abdomen, the musculature is weaker and more likely to herniate.

He asked for a show of hands and quite a few people indicated that they had developed hernias.

In the morning we had the business part of the meeting – the AGM, with appointment of new officers, financial report, etc. etc. and details of future meetings, outings, presentations by manufacturers, etc. Lunch was provided, and tea and coffee.

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 Final Scheduled Stoma Clinic Appointment

I had a stoma nurse appointment this a.m. and she expressed herself as extremely pleased at how things are. She was very impressed with how well the operation wound and Kermit have healed up, and how clean and healthy the peristomal skin looked. I have been using Coloplast SenSura soft convex bags for a while now, and have recently started using Trio Silex Flange Extenders which are a total dream – very thin, flexible, almost invisible soft silicone which peels off really easily without leaving any residue, and breathable.

Because I am doing so well, she hasn’t scheduled another appointment unless I want to come back, say after the chemo has finished in the autumn, or if I have any problems.

Since my surgery, I’ve had problems with mucous discharge from my rectal stump – a feeling of needing to “go” and not being able to bear down. Quite a lot of discharge coming when I’m on the loo, with sometimes a definite “plop” as the plug comes out. Sometimes it’s a bit pink with blood. The chemo makes it worse. I have tried a technique called “anal stimulation” which spinal injury patients use to help them evacuate their bowels. You push in a finger a short way and twirl it round and round to open the anus, allowing the content to escape. I use a piece of toilet paper, to do this, and it allows quite a bit of mucus to escape.

My surgeon said a lot of people have this problem post-surgery and that it may eventually clear up.

I have read that mucus is a natural discharge from the large bowel and rectum, which helps lubricate the stool on its way out, being absorbed by the stool in the normal functioning system. Once there is no stool to come out, the mucus is still there and has to come out. I have a short rectal stump and am amazed how much it can produce! While for some people this can stop eventually, it seems more logical, given the above, that it would go on forever because it’s a normal body process to produce it.

I spoke to the oncologist about it last month and she said I might mention it to my stoma nurse, and then she said, “I’ll phone her straight away and see what she suggests.” (They are so marvellous – everything I tell them gets dealt with straight away and they always seem to have an answer up my sleeve to help me through my various difficulties, but the secret is to tell them everything so that they know, and can help.) She came back to say that the nurse recommended something called “Micralax” which is a small plastic capsule with a plastic tube on it which you insert into the rectum and squeeze the liquid in – it is a mini-enema. You keep it in for 5-10 mins or however long it takes to soften the mucus and then this comes away when you go to the loo.

She gave me a prescription straight away, and I tried it that night, but was amazed how painful it was – not the insertion of the tube, but the stuff itself. I couldn’t bear to keep it in even for 5 mins. and after I’d expelled it down the loo (before it had really had a chance to work) my bum was sore for quite a long time afterwards. I’d been told to do this twice a week, and it was just as bad the next time, after which I phoned the stoma nurse.

She said that this stuff does tend to cause a bit of pain, but in my case it sounded more extreme. She said there might be some inflammation in the rectal stump, and to try using it once a week. It was still painful a week later when I used it but not quite so bad. She said if it wasn’t any good, we could try glycerin suppositories which are more gentle, and to leave it until my appointment today, when she gave me some suppositories to try.

The discharge doesn’t seem to be so bad at the moment. I do find that the discharge comes in waves – for a couple of weeks or so it’s a real problem, then it seems to disappear for a bit, only to return. It’s very unpredictable, but the chemo does make it worse. I shall be trying the suppositories when it returns again.

She said that if they work, I can get them on prescription via my GP, so no need to return to the stoma clinic for them.

I also enquired again about support pants and wraps, which I’d asked for some time ago and nothing had been forthcoming, and she showed me some samples from their store cupboard and gave me some leaflets to take home. She suggested I search the Internet and find something I like, and they will arrange a prescription from my GP. I have been resting (and sleeping) this afternoon as I am feeling very wiped out again after my chemo on Friday. I have not yet therefore had time to explore and find what wraps/pants I want yet. Eventually, once I’ve decided, and started with a couple of each from the manufacturer(s), my regular supplier will be able to provide me with them with my normal orders from them for bags etc.

The stoma nurse was impressed with how well I am, despite the chemo, and how well I am coping. We chatted about attitude, and how being positive, upbeat, keeping a sense of humour, and thinking of others, all help one enormously. I have every expectation that I am going to beat the cancer completely and make a good recovery from all the illness and trauma of this year. I said to her that it has changed me, and hopefully made me a better person, and I have learnt so much, and made so many new friends around the world, and unpleasant as much of the procedure has been, given my time again, I would not change a thing. I never, never thought I could ever say such a thing but it is really true. My life has been incredibly enriched through this experience.

While we were waiting for my appointment, and then afterwards when we came out, we met up with 2 lovely ladies (it turned out my hubby knew the daughter from where we used to live) – the elderly mother is a new ileostomate (since May) and is struggling a bit. My hubby and I were able to tell her quite a bit and he’s given them our number so if she wants to come over and have a session in what my hubby calls my “girlie bathroom” (lol!) she is most welcome, and I am sure I can help her. I told her several good suggestions I’d learnt on the Camp Crappy forum on Inspire, which were news to them both, and said I’d be happy to help with any questions she might have. I feel so great, being quite a newbie at this myself (just under 5 months post-surgery) but doing so well and now being able to help others get through the rocky first months of their own journey. I am so grateful to Camp Crappy which has helped me so much and helped me to be informed, and much more able to cope. This poor lady has very poor appetite so we are going to try and help with some nice tempting food ideas too – my hubby has been “feeding” me throughout and we know what’s good for stomas, and what is enjoyable and appetising when one is on chemo and not feeling like eating.

The stoma nurse loved my hair! I told her I’ve started telling people it’s a side effect of the chemo lol! I’m waiting for someone to say, “What are you on? Can I have some?” Hahaha!!

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.

Ostomy Open Day

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

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

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

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

CD Medical

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

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

Colostomy Association

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

Convatec Mouldable Pouches

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

IA (Ileostomy and Internal Pouch Support Group)

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

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

Independence

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

Miscellaneous Items

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

Opus Healthcare

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

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

OstoMart

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

Pelican

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

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

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

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

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

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

StomaWise

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

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

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

Suportx

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

Torbay Hospital

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

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

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

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

Good News on the Coloplast SenSura Mio Range!

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

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

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

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

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

A Good Stoma Clinic Appointment

The second of two posts for today.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

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.