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.

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.

Skin Problems

Since coming out of hospital, I have developed some dermatitis in the immediate peristomal area. I think this is due to the fact that I cut the hole in one of the bags slightly too large, exposing a small ring of normal skin to stoma output. This is not like normal poo; it has not had the benefit of passing through the colon where water is absorbed, forming normal stool; it is still very acidic, and while the small intestine lining is designed to withstand this (as is the stoma, formed by bringing the end of the small intestine to the surface and turning it back on itself and sewing it to the surface), normal skin is not; it can cause severe excoriation and can be very painful and uncomfortable.

I noticed that the area was becoming itchy and sore, and when I changed the bag the next day I could see some patches of red. Immediately after surgery, the stoma is quite large, and this shrinks gradually as the swelling goes down, until it eventually reaches its permanent size. The bags come with concentric circles marked around the hole, and you measure the diameter of the stoma and cut the hole to the correct size. Immediately post-op, my stoma measured 40 mm, and after a few days this was reduced to 35 mm. I cut several bags to this size in readiness, and the last one I used was slightly too large, because the stoma had shrunk a little more.

When I realised what had happened, I cut the next one to 30 mm (the next circle in), but this was slightly too small, and I think this caused the edge of the cut circle not to sit flush with my skin, allowing further leakage underneath.

The problem got worse until the area was swollen and red all round, and very uncomfortable. Last Friday we phoned the stoma clinic but they couldn’t fit me in on that day, and as I had an appointment on the Monday anyway (yesterday) they said it should be fine until then, and the itchiness did subside somewhat.

When I saw Helen, the stoma nurse, yesterday, she examined it, and after cleaning it thoroughly, she applied some special powder which stuck to the affected area and brushed away from the normal skin.

She then applied a mouldable ring around the stoma.

These rings are soft and pliable and can be pulled into shape to fit your stoma. She said this one was impregnated with manuka honey which has healing properties. The ring provides a leak-proof seal between one’s body and the bag. She gave me a supply of these.

She also told me not to change the bag daily, as I had originally been instructed to do, but to change it every two to three days; this is the normal frequency most people use, and it allows the skin to settle down and not be interfered with by pulling the bag away.

The bags are easy to remove, though, using a small aerosol spray adhesive remover, spraying as you go, as you peel the bag away from top to bottom.

People on the Ostomy Support forum on Inspire also recommend using a very small quantity of the basic Head and Shoulders anti-dandruff shampoo (not the one with added conditioner) applied to the affected area and then rinsed off well, and then dried and wiped well with a barrier wipe. To start with, I am following the advice of the stoma nurse but if this doesn’t work, I shall try the H&S remedy – it is the zinc content in the shampoo that is the magic ingredient.