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.