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?

Leeking Like the Welsh

Sorry about that…

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

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

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

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

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

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

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

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

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

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

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

This is what the convexity looks like from the side.

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

This is what it looks like closed.

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

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

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

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

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

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

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

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

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

Stoma Clinic Appointment

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

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

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

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

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

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

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

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

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

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

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

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

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

My First Leak, and Progress on Skin Problem

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

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

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

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

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

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

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

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