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Roses are red,
Violets are blue,
In your bag you've got lipstick,
In mine I've got poo.

Row of Handbags

Row of Handbags

Tuesday, 28 April 2015

Kermit’s One Month Birthday

It is now a month since Kermit was born. Since then his name has been expanded to Kermit E.G. Robinson, because on the Inspire forum I was asked to post a photo of him, and someone said he looked like a Chicago gangster from an old movie! I replied that perhaps they had Edward G. Robinson in mind – he did have rather a squashed froggy face lol!! So, Kermit E.G. Robinson is born.

Unlike other babies, Kermit E.G. Robinson is not growing with time – he is shrinking! To begin with he was a nice perfect circle measuring 40 mm in diameter, but now he has gone rather egg-shaped, and measures between 25 and 30 mm – ish. Hopefully he will settle down to a nice round again, but apparently no stomas are perfect…

My hubby went out shopping this a.m. and came back with this:

Kermit Card Closed 28-4-15

I opened it, and out Kermit popped!

Kermit Card Open 28-4-15

Isn’t he making a big splash as he makes his entry into the world? Hopefully he won’t be creating too many (brown) splashes during our lifetime!

I think my hubby is very clever to have found him such an appropriate birthday card.

Monday, 27 April 2015

Scheduled Stoma Clinic Appointment

Today I had my second scheduled appointment at the stoma clinic – the first one was a fortnight ago today and all being well, I should not have been back again until today, but because of the leaking problems I had last week, I had to have two extra emergency appointments to get sorted out.

On Thursday when I saw the HCA, she said they only had one type of convex bag in stock so I’d have to go with that (the Oakmed Hydrocolloidal Soft Convex bag # SC45 4120KV) which I wasn’t too keen on, and over the ensuing days, I did not change my opinion of this bag.

The opening proved a real pain, and I never managed to empty the bag and clean the opening without getting output on my hands, and I really didn’t like the closure. I was hoping that today she would have some different ones in stock for me to try.

They don’t have much choice in convex bags at the clinic. She produced the only other one they have: the Salts Confidence Natural Convex bag #XNDL 1338.

Salts Confidence Natural Convex Bag

This bag has a shallower convexity than the Oakmed one, and it is slightly softer. As you can see from the photo, the flange is divided into sections so that it fits any skin contours better. It has a viewing window over the stoma but it is not quite so easy to see more of the inside of the bag as it was with the Oakmed one. I much prefer the closure on the Salts bag, though; being more like my original Coloplast bags, with the Velcro wings, and the Salts bag has a nice large Velcro patch to hold the closure when you want to tuck it up inside the lining, giving a nice smooth profile at the bottom so that it doesn’t dig into your leg – I hated this about the Oakmed one! The flange is impregnated with aloe vera for skin health, and the bag has a nice anatomical shape too. Finally, the closure has a stiff plastic strip on either side so that you can press the sides together to open the bag, like the Coloplast bag – this is going to be nice and easy to empty and clean.

As long as there are no leaks, this seems quite a nice bag and I should be happy enough with it, but being a convex bag, the flange is somewhat rigid. It has belt loops like the Oakmed bag and although the HCA suggested I use the belt, I don’t think I will as I didn’t find it that comfortable and felt much too trussed up.

I was a bit disappointed not to see a stoma care CNS for the second time running – in my experience they have been a bit more willing to listen to my opinions and wishes. Again, the HCA was quite dismissive of the Trio products and said they’d seen them at a product show last year and she “hadn’t been impressed.” She did not like the idea of them being non-absorbent – she said that with the absorbent hycrocholoidal adhesives, any effluent was absorbed into the product, away from the skin, but on the Trio website they emphasise the fact that if the effluent is absorbed by the product it is in contact with the skin for longer. Not sure what I think about this now! Anyway, I told her how very impressed I’d been with the Trio samples I had had, and how easy it was to fit the ring, which shrinks automatically to a perfect fit around the stoma. I said I liked the idea of using a ring because it made the fitting of the bag less critical, but she dismissed this saying that once my supplies were set up, the bags would be pre-cut anyway. In the meantime, she has cut the bags for me, to last until my next appointment on Friday week (8th May) and what I do if Kermit shrinks any further during that time, I am not sure.

When she changed the bag, I had to ask her again to use more adhesive remover spray because she really hurt me last time by using insufficient spray and pulling the bag off too quickly. It wasn’t quite so bad this time but I still winced a bit!!

She cleaned the area with water and wipes, and then simply dried it and put the new bag straight on. I asked if she wasn’t going to use a barrier wipe and she said no; if you use these every time, they build up and stop the bags adhering properly! This is certainly not what I have been told before (or read online), and she also did not use any adhesive remover wipes to remove any residual adhesive still on my skin. She said “less is more” and said that my skin was beautiful and shouldn’t be interfered with – to me, the irritation is a lot better than it was, but it is still there – it is still a bit red and there are a few little red spots. She said she likes to keep the whole process as simple as possible and use the minimum amount of different products, but I don’t mind how much stuff I use if the result is going to be better! The specialist nurses seemed to take a different approach.

This makes my appointments somewhat confusing. I know I am still very much a beginner and should bow to their expert advice, but when it is conflicting, and when it conflicts with the advice of seasoned ostomates (who after all are living with a stoma every day, unlike any of the professionals, and know what works from experience), it is often quite hard to know what to do. I do know that I should be free to try different things and discover for myself what works best for me.

I have my own views and opinions, albeit based on fairly limited experience so far, but I do know what I like, and what I feel confident about, and over my past two appointments I didn’t really feel that these views and opinions were sufficiently acknowledged, but were simply dismissed.

My preferred option is still to have a mouldable ring (if necessary, a convex one) topped with my original flat-flanged Coloplast bag (the updated one: new Sensura Mio One-Piece Drainable). A ring will allow a better seal and make the fitting of the bag less critical, whether or not it is pre-cut. I would feel more confident with that extra layer of security; I have had enough problems with leaks and skin irritation and do NOT want to go down that route again!!!

When the sample convex ring I have ordered from Trio arrives, I shall try this combination and see how it goes.

I am now getting to the stage when I can’t wait for my body to settle down to its permanent state post-surgery, and to be able to exercise more of my own personal choice as to what products I use, and get a home delivery system set up which suits my needs and desires.

When we got back, there was a message from CliniMed, whom I had contacted yesterday for samples, and we had a long chat about different products, and she is sending me a pack of things to try. I also contacted Salts for some of their samples (including a sample of the bag the HCA gave me today), and I have ordered a sample of the Trio convex flange. All of these samples should arrive in the next few days, and I shall be very interested to try them in different combinations. More news on this later.

Thursday, 23 April 2015

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).

OakMed 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.

OakMed Convex Bag Showing Convexity

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).

OakMed Convex Bag Front Showing Closure

This is what it looks like closed.

OakMed Convex Bag Front 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.

Tuesday, 21 April 2015

An Exciting New Product Range

Last week my hubby went to the dentist, and told him all about what I had been going through recently. The dentist told him that he has a friend who owns a medical manufacturing company and they have recently broken into the ostomy market with a remarkable new product which is taking the ostomy world by storm. At a recent symposium in Sweden, the new product wowed all the delegates (and probably got them seriously worried!). They are building a new factory with robots and sterile packing areas, and they have won the Queen’s Award for Industry with this innovation.

The company is called Trio Ostomy Care, and the product they have developed is a new breathable silicone. Up until now, surgical silicone has not been breathable, which is quite a drawback as long-term contact with the skin can cause problems. The adhesives used in nearly all available ostomy products is a hydrocolloid substance which, while breathable, is also absorbent, and can soak up any leakage from the stoma, causing skin irritation. To have developed a compound which is both breathable and non-absorbent is a breakthrough indeed.

On their website they give details of the four products in their line: two stoma rings (one flat, one convex) in different sizes; their silicone gel for filling creases and uneven skin, and their banana flanges  (flange extenders).

My hubby phoned them and told them about our dentist knowing their MD, and later on a lady phoned, and I was able to speak to her. You can order samples from the website, but I asked her on the phone, and she enquired what size my stoma was, and we spoke a bit about my various needs etc. I asked if she could send enough samples for me to take in to show the stoma nurse next week, and she said she could do better than that – if I gave her the name, and the address of the hospital, she would send them a nice box of supplies, and some information, so that they could be equipped, and have samples to offer to their patients. She said she would put the samples in the post that night.

She told me that all their products were available free on prescription, and the stoma nurse said that there should be no problem with my supplier (Patient Choice) getting hold of supplies for me.

My pack arrived today, which I think is pretty efficient! I am very impressed by the attractive packaging.

Trio Sample Pack

Inside the pack:

Trio Sample Pack Open

They have sent me three silicone rings, a small tube of the gel, and four banana flanges.

Trio Siltac Rings

On the website, there are Youtube videos about each product. When you open the blister pack for the ring, the ring is stuck inside. You roll the edge till you’ve got enough to get hold of, and then pull it out. It stretches quite alarmingly! However, as you hold it, it gradually shrinks back into shape again. When you place this over the stoma, making sure there are no air bubbles, it will slide into place, making a perfect seal around the stoma, adjusting itself to any irregularities, and it is then less critical to cut the hole in the bag to be such an accurate fit.

I am really looking forward to trying this when I do a bag change tomorrow, and also the new bags the stoma nurse gave me yesterday.

Trio Silken Gel Sample

Trio Banana Strips

My hubby told the stoma nurse all about these products at my appointment yesterday, and she was very, very interested – he had printed out some pages from their website about the products which he left with her.

I have another appointment next Monday with her, and I am looking forward to being able to report how well I am doing with the new products, and also hearing what they think about them, too. Hopefully by then the skin irritation will have cleared up, too.

I’ll let you know how I get on.

Onwards and upwards! I am sure I will conquer these problems eventually, and I am prepared to try anything that works!

Monday, 20 April 2015

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.

OstoMart Banana Flanges

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

OstoMart Banana Flange Instructions

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!

Hollister Adapt Ring

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.

New Coloplast Bags

New Coloplast Bag Detail

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.

Patient Choice Supplies 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.

Patient Choice Supplies Bag Open

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.

Sunday, 19 April 2015

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.

Banana Flanges

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.

Tuesday, 14 April 2015

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.

Convatec Orahesive Powder

She then applied a mouldable ring around the stoma.

Coloplast Brava Moldable Ring

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.

Early Days

For full details of my hospital stay, please see my main blog (Cancer Diary page). I have now been home exactly a week, and my convalescence is going well, albeit slowly. I keep being reminded by everybody (professional and lay) that I have undergone major surgery – a very serious operation – and that recovery is not going to take place overnight; it will be baby steps, and a long and slow process involving lots of rest.

In the early days after surgery, the nurses took care of my stoma bag for me, emptying and changing it. At this stage I wasn’t too aware of what was going on, and the output was fairly minimal, and very liquid. Once I had been on the ward for a few days, the stoma nurse started visiting on a daily basis, coinciding her visits with those of my hubby, so we could learn together.

My initial thoughts were that I would come round from the operation and at the first sight of this aberration on my abdomen, would freak out and say “Get that thing off me!!!” but contrary to expectations, it has been far less freaky than I’d expected. I think a lot of this is due to the fact that during the delay in my admission caused by so many postponements, I had plenty of time for online research, and I gained a huge amount of support and information from the Ostomy Support Group on Inspire, and I so steeped myself in the weird and wonderful world of those who crap out of the front instead of out of the back, that it gradually became more normal for me, and very familiar.

The stoma management training was excellent. The first time, the stoma nurse simply did the whole thing in front of us, explaining each step. She gave us a printed sheet with instructions, and a list of supplies needed for each bag change. She said it was a good idea to get everything out ready before one starts, and I have followed this advice ever since.

The next day she encouraged me to do it myself, under her direction, and my hubby helped, passing me things as I needed them. The next day he and I did it together, and then he did a change all on his own – it is very good that he has wanted to be involved right from the outset, and we know that if I am having a bad day M.E.-wise and don’t feel up to dealing with it, he will be able to do it for me.

I was soon able to get myself to the loo and empty the bag myself. To start with, I sat myself on a chair in front of the loo and then emptied the bag, and continued with this, sitting on my shower stool, when I came home, but then I got to thinking that if I am out and about, I cannot depend on there being anything in the loo to sit on, unless I’m using my wheelchair, and I started sitting on the loo itself, with the seat up, to allow more room, sitting well back, and emptying. This has proved very satisfactory and is now my preferred method.

To start with, the smell really freaked me out. I am a naturally fastidious person who hates nasty niffs and bodily mess – I would have been hopeless with babies lol!! One of the nurses helping me in the early days suggested doing what they all do – they have to deal with horrible smells coming from patients all the time, and she said they just breathe through their mouths! I started doing this and it wasn’t so bad. However, the smell can linger in the bathroom.

Before I went into hospital I researched this aspect on the forum, and learnt about a wonderful product called “Deja Poo” – it is a spray which comes in a beautifully labelled bottle and you spray the surface of the water in the loo “before pooing” and this deals with the smell! The fragrance I chose is called “Poo Pourri” (lol!) and has a delightful light, lemony smell; they are fragranced with natural essential oils.

Deja Poo - Poo Pourri

You can see from the picture how beautifully packaged this product is. I bought both sizes – the small one will go in my travel kit. Each comes with a dear little metal charm and I am saving these to go in my art supplies. Different fragrances have different charms.

There are various products available to spray or drop into the bag after each emptying to deodorise the output, but someone else on the forum suggested popping in a single fresh mint Tic Tac and I have been doing this, and this tactic, alongside the Deja Poo, is really working, and I no longer have to breathe through my mouth!

Fresh Mint Tic Tacs

When emptying the bag, it is necessary to clean around the opening with toilet paper. It occurred to me that since this was not coming into contact with my skin, it would be unnecessary to use the posh expensive luxury soft paper I regularly use, so I have bought in a supply of Tesco’s el cheapo soft loo paper and have a second free-standing holder beside the loo for stoma use. You do get through quite a bit and this is a real money saver!

Since coming home, my stoma is settling down nicely. I have been on a low fibre, low residue diet to allow the operation wounds to heal and for the internal swelling to subside, but the stoma nurse has advised adding small amounts of fibre to my diet now, to see how I get on. The output is a healthy porridgy consistency and apart from a couple of nights with excessive wind, when I thought I should either float up to the ceiling, or explode like the Hindenberg! – I have learnt how to “burp” the bag without emptying it – things have been going well in that direction.