Early April and Beyond…
Improvement, Fun and Coming Home
I am writing this on Tuesday 14th April, a week after my discharge from hospital. It is taking me a long time to catch up with blog updates, replying to all the wonderful messages I’ve had, etc.
On about Tuesday 3rd April, my hubby was feeling rather despondent about what he considered the slowness of my progress. I told him again what I’d warned him of before I went into hospital, that with my M.E. I was starting from a lower baseline than “normal” people and that it was bound to take a little longer. However, a day or two later he said it was remarkable how in the previous 48 hours, I had definitely turned a corner, was looking better, and starting to make progress. Here is a picture of me, taken on Day 9 (5th April) after the attachments had all been removed:
You can see how much better I look than on my previous photo! I have got my new bear, Mr. Rupert Pullan (named after my surgeon) – Rupert for short. Most sensible people have rescue cats and dogs, but my hubby rescues teddies from charity shops! He discovered Rupert and bought him for me.
I felt an awful lot better as one by one the various attachments were removed from my body – the best being the ghastly NG tube! Once that was out I could concentrate on trying to clear the congestion in my nose which had been driving me nuts. I was still on the oxygen which had rather a drying effect, but with the saline spray I always have with me, gradually the congestion started to clear, even if it did involve a nosebleed one evening!
Progress was made a couple of days after the catheter and drip were removed, and I was told that I no longer had to have my fluid intake/output monitored as they were satisfied that everything was functioning OK in that area. At about this time, coinciding with an improvement in my mobility and the ability to make it to and from the loo under my own steam, my blood pressure began to climb back up and the oxygen was removed.
I had a bit of a setback and felt rather poorly in an undefined sort of way one day, and during the night, happened to meet a nurse on my way to the loo and remarked that it was a pain having to get up so often to go. She asked if this was normal for me, and I said no; she immediately gave me a pan to pee in and said she would test it. In the morning it was revealed that I had a mild UTI (urinary tract infection) and was immediately put on a three-day course of antibiotics which sorted it out pretty speedily. It just goes to show that it is important to tell them everything, even if it seems trivial. What I had put down to a change in my system, perhaps post-op swelling pressing on my bladder, turned out to be something they could quickly deal with. Not having developed more severe and recognisable symptoms, it never occurred to me that I might have an infection.
On the Tuesday, two new ladies arrived on the ward at the same time – Sue (opposite me) and Elizabeth (opposite and by the window). They had both had bowel cancer like me, but in the absence of inflammatory bowel disease, they had had their tumours removed by keyhole surgery and an anastomosis performed (joining the cut ends together) so they were able to make a more rapid post-op recovery.
We soon found that we all got on very well together, and we had a lot of fun, calling ourselves “The Allerton Three.” Towards the end we were all about the same mobility-wise, and would sit with each other and chat. One day Elizabeth was standing by her bed with one pink slipper on, and a white-stockinged little toe was pointing delicately like a ballet dancer under her bed and we said, “What on earth are you doing?” – unable to bend down, she was trying to retrieve her other slipper from under the bed. It looked so funny and we all started laughing until my tummy hurt! The nurse came in at this point and said, “What’s going on in here?” and joined in the fun. On another occasion I was out of bed while they made up my bed, and when I got back in, I discovered that I was sinking – Sue said, “You are disappearing!!” and I suddenly found myself sitting on something extremely hard – the base of the bed! One of the nurses had inadvertently switched off the pump on my airflow mattress and I was gently and gracefully disappearing from view as it deflated, with my feet rising higher and higher. Sue said I reminded her of a TV advert she’d seen for crisps, with the man eating crisps in his hospital bed, and some kids coming in and operating the bed controls so that the head and foot of the bed came up like a Venus fly trap, scattering crisps everywhere, which the kids ran off with! This caused more laughter.
After this, the nurses started coming up to our bay (the end one on the large ward) for a bit of light relief! We all had such fun. One of them, called Cat, told us about the Bristol Stool Chart. I thought this must be a joke, but she assured us it was real. Here it is:
The very idea of someone poking around in different sorts of poo and going to the trouble of grading it is quite beyond belief! We were all in fits of laughter over this. Cat told us that one of the nurses had a mug with it on, and later he showed us. She then showed us a picture of a cake someone had made, with the Bristol Stool Chart depicted on the top in chocolate icing!!!
We were told that there was a builder working on the ceiling in the sluice a while back, and one day he looked down from his ladder and said to the nurse who came in bearing a pan full of poo, “I think that’s about a Type 4, don’t you?” She said “What on earth do you know about that?” and he said that after a few days spent listening to the poo-obsessed nurses, he knew all about the Bristol Stool Chart!!!
It soon became clear that everybody on Allerton Ward (being the gut ward) was totally obsessed with poo. Sarah, our favourite HCA (Health Care Assistant – equivalent to the old State Enrolled Nurses) said that she lived and breathed poo, and that her hubby did indeed think she was really peculiar! She said, “I love poo…”
Whenever they came to do our obs, after taking our blood pressure, temperature and blood gases, they would always ask the same litany of questions, “Any nausea?… vomiting?… How’s your pain? Have you opened your bowels?” They kept asking me this and I said, “I would if I had any!” This caused momentary confusion and a quick cover-up when the question was rephrased, “How’s your stoma?” Lol! They wanted to grade my output according to the Bristol Stool Chart but being ileostomy output without the benefit of having passed through the colon, the scale really doesn’t apply – what they were looking for was a porridgy consistency!
Stoma training
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 the Inspire forum, 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.
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!
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.)
Transfer to a different ward
On the Sunday, Sue was sent home and Elizabeth and I agreed that we were really going to miss her. Almost immediately after she’d gone, it was announced that the two of us were going to be transferred to the gynae ward because we were no longer acute and they needed the beds. We were told that the gynae ward was a lovely ward, all ladies (of course) and very quiet, and we’d get better nights down there. When we arrived, we found we’d been separated which was a bit of a blow. We agreed that we’d probably been sent down for bad behaviour, and our separation was part of the punishment, to keep us out of trouble!
That night I had a rotten night. I was put in a bed without an air mattress and the mattress was really hard and uncomfortable; it was much hotter down there and they insisted on drawing all the curtains around each cubicle overnight, although I did request that the curtains at the end of my bed be left open – I felt so closed in. I was amused in the morning that the breakfast toast was served in a toast rack! Obviously a much more select and posh level of accommodation than roughing it on Allerton, and I wondered who on earth I was going to talk to about poo, down there. It soon transpired that the nurses (and the patients!) were equally poo-obsessed so I felt right at home.
The two ladies next to me in the bay were both taking up bed space like me because of lack of availability of suitable beds elsewhere – both had seriously broken ankles and one was awaiting surgery as soon as the swelling had reduced sufficiently. They were both delightful, as were all the other ladies on the ward, and I soon felt more at home, but it lacked the fun atmosphere of Allerton ward, even though it was a lot quieter and with much less bustling activity by the staff. My special light diet meals also took longer to come, being away from a ward where special diets were de rigeur.
I was really ready to come home on the Sunday (Easter Sunday) but it appeared that over the weekend and bank holidays, the only people who appeared to be doing any work or showed their faces were the nurses! There was therefore nobody to discharge me. On the Tuesday I was able to see a junior doctor who declared me fit for discharge, and the physio who organised the provision of two Zimmer frames for me to take home (one for downstairs, one for upstairs). I also saw the stoma nurse who was all for bringing down a bag to keep my supplies in, but I dissuaded her, saying that I had been promised a choice, and was prepared to wait till my outpatient appointment. They filled the white box they give you in hospital so I had sufficient supplies to last till the outpatient appointment, and then began the long wait for my drugs to be sent up from the pharmacy. From the moment I was told I could go, to the moment my hubby and I left, it took six whole hours!! The wheels of the NHS certainly do grind exceedingly slow and small.
On previous occasions when I have been discharged from hospital I have felt very vulnerable and weepy. You quickly get institutionalised and very accustomed to having lovely caring nurses appearing when you press your call button, and you feel safe and secure, with lots of company and no decisions to make, and the thought of leaving the bubble and re-entering the Big Wide World is pretty alarming. However, this time, I was more than ready to go, and shed not a single tear. I also had something lovely to look forward to: the arrival that evening of one of my two best friends from school. She is a retired nurse (how many people are discharged home into the waiting arms of a private nurse lol!) and this year we have been friends for 50 years. We met at boarding school, aged 12 and have been firm friends ever since, and my hubby and I are Godparents to her younger daughter.
Alison was amazed over the coming days, how little actual physical/nursing help I needed; I pointed out that they don’t send you home till they are confident that you are as independent as possible. She was interested to witness a bag change; it is some time since she nursed stoma patients and remarked how things have moved on since those days. She was such a help to us both, cooking our meals and even doing some baking, and doing odd jobs around the house, generally giving my poor hubby a break, and allowing him to see that looking after me on his own during my convalescence was not going to be as arduous as he had feared, which gave him more confidence. I was able to rest (she encouraged me to rest in bed after lunch and to go up to bed early even if I didn’t want to sleep immediately) to give my body the chance to recover. As it happens, I do not have the strength to do much else! We had plenty of time to chat and laugh, and to reminisce and share all the things we always talk about. She had to go home on Sunday and despite all her hard work, said it had been like a holiday for her – she is very busy at home sharing duties with her sisters, caring for their elderly parents as well as having a busy life generally, with her hubby and one of her sons who is at present at home. I miss her! I said she must come and stay for a proper holiday as soon as I am well, and we can take her out and about and show her around the beautiful area in which we live.
Since my discharge, I have had the district nurse calling daily for my Fragmin injections (only 10 more to go…) and I have been enjoying my low fat diet and eating well, and dealing well with the stoma and bag.
Tuesday 14th April 2015
Convalescence, Stoma Clinic and Histology Results
Yesterday I had my first outpatient appointment in the stoma clinic, and saw Helen, one of the specialist stoma nurses. I told her that I had been having problems with some skin irritation in the immediate peristomal region. Stoma output is not like normal poo; it has not had the benefit of passing through the colon where water is absorbed, forming normal stool; it still contains digestive enzymes, 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; contact with the output can cause severe excoriation which 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. I believe this was due to the fact that I had cut the opening in one of the bags slightly too large. As the stoma shrinks during the healing period, it has reduced in size from 40 mm immediately post-operatively to about 32 mm, the current 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. I had cut several at 35 mm and the last one I used at this size was a little too large, exposing a small ring of skin to output. When I realised what was happening, I applied a bag cut to 30 mm, which was just too small and probably not lying entirely flat against my skin, again allowing for leaks. The area has grown larger and more uncomfortable over several days. We phoned the stoma clinic last Friday and were told that it would keep till my appointment on Monday. Helen examined it, and applied some special powder.
Then she put on a mouldable ring which she stretched to the size of my stoma; she said these are impregnated with manuka honey which apparently has remarkable healing properties. These rings are soft and pliable and can be pulled into shape to fit your stoma. The ring provides a leak-proof seal between one’s body and the bag. She has given me a supply of these and some more powder.
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.
She brought in a choice of three different bags to carry supplies while out and about; the bags are supplied by the different supply companies, and the one you choose determines which company you end up dealing with. The bag I chose has lots of different zipped compartments and is produced by the only supplier which runs on a non-profit basis – Patient Choice – they plough their profits into charities supporting ostomy care and inflammatory bowel disease, and they also send unwanted ostomy supplies to the Third World. I think this is an admirable idea, and I’m glad I chose the bag from this supplier.
She gave me enough supplies to tide me over to my next outpatient appointment in a fortnight’s time.
She also told me to start introducing small amounts of fibre in my diet, in the form of fruit (apples, unripe bananas) and some vegetables; I am already having carrots and broccoli (florets only) and she suggested cauliflower (again, florets only – the stems are too fibrous for now). To be on a low residue diet for too long will make my system lazy!
Histology results
Then Nita, one of the other stoma nurses, who is also a specialist colo-rectal nurse, came in with my histology results. Mr. Pullan had removed the whole of my large bowel and rectum, and the connective tissue and blood supply for the area, and all the regional lymph nodes (45 in total). Histological examination of these organs and tissues revealed that the tumour was Stage 3 (Duke’s C) which means that it had invaded all the layers of the colon wall, but had not metastasised to other organs (which would have been Stage 4) – this was confirmed by my earlier CT scan. The grade of the tumour, from 1 to 4, was unfortunately 4, the most aggressive and most susceptible to spreading; the cells had “poor differentiation” which meant that it would have been hard to differentiate between these and a cancer from a different organ; the cells were therefore highly abnormal and not recognisable as being colon wall cells. One of the 45 lymph nodes was shown to have been invaded by cancer cells. On the TNM scale (Tumour, Nodes, Metastases) it was therefore T3 N1 Mx. This was not as good news as I had hoped; it means that it will be necessary for me to be referred to an oncologist and undergo some chemotherapy.
However, Nita explained that the surgery was considered “curative,” and that the chemo should be seen as “belt and braces” – just making absolutely sure it had all been dealt with. She agreed with my understanding that this meant that if one rogue cell had escaped elsewhere in my body but was too small to show up on a scan, it could cause trouble in the future, and the chemo would deal with this before any problems could arise.
I am hoping that I shall have a single cycle of oral chemotherapy and not have to undergo intravenous therapy; I am hoping also that it will not make me feel unwell, if it is a low dose. Chemotherapy can affect the functioning of a stoma, altering the quality of the output, and I am already feeling quite unwell enough, and have been through enough, without any further discomfort. I should receive an appointment to see the oncologist in the next three weeks.
I am returning to the stoma clinic in a fortnight’s time, when they should be able to set me up with the supplier and start to get everything delivered to our door on a regular basis. This is set up as a free prescription service and the clinic will order what I need; all I have to do is notify the company when I’ve got about a fortnight’s supply left, and they will top me up regularly – I can do this by phone or online once I am registered with them. It should present no problems.
My follow-up appointment with Mr. Pullan is on 28th May, which will probably be just to check that everything is going OK and that I have healed up nicely.
Sunday 19th 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.
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.
Monday 20th 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.
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 (see next date below) and by next week I will have had a chance to try it.
Tuesday 21st 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.
Inside the pack:
They have sent me three silicone rings, a small tube of the gel, and four banana flanges.
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.
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!
Thursday 23rd 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 one 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.
Monday 27th 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.
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.
Tuesday 28th 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:
I opened it, and out Kermit popped!
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.
Comments from my old blog
Lisca Meijer
17 April 2015 at 00:00
Thank you so much for taking the trouble to write about your experiences in hospital. I have been sitting with a mug of hot chocolate and reading all of it with an occasional giggle. Yes, I know nurses are poo obsessed. I am very familiar with the Bristol stool chart. Having always worked in Bristol I wasn’t aware that stool chart was a national thing. I thought it was just in Bristol it was used. I’m glad things are going OK. But I’m sorry the news is not as good as you expected. Better to have some chemo though to mop up any rogue cells. I do understand how disappointing that is. Say hello to your hubby for me. I’m going to bed now, it is 1 am. Many blessings, Lisca
Anne
17 April 2015 at 00:52
Hi Shoshi I am amazed at the detail you are able to recall about everything – I would be useless. I am sure that it will be a time of ‘ups and downs’ but you sound so positive and are dealing with it well . I am sorry that the news was not as good as you’d hope and that you have have the chemo however hope it will be the single cycle as you say. Thanks for stopping by my blog – it was so good to hear from you. At moment I am using mobile to reply. It is 12.50 pm but cannot sleep and wanted to reply to you as soon as possible. Hang in there – I will be thinking of you both and you are always in my prayers. Very gentle hugs Anne x
Shaz Brooks
19 April 2015 at 15:07
Hi shoshi, I can relate to this problem! I think its all down to the swelling from surgery going down unevenly. I had the same problem over the first week or ten days. After all the swelling had gone, the problem with leaks vanished. The smilies do help no end with this problem. I’ve also had skin damage problems, and my fix was recommended by my DIL’s best friend, who has had a Stoma for twenty odd years now, so has a lot of useful info. She recommended Tesco own brand, cheap Nappy cream. And I have to say it does a fantastic job. What I do, as obviously the adhesive won’t stick to cream, was to cut a piece of dry wipe, enough to cover the skin damage, and stick that to the adhesive on the bag. Then smear cream onto the wipe, then stick in place. You can use a smiley if you need a bit of extra security. Back last year, I had the whole area of the adhesive around my Stoma damaged, I think it was probably a reaction to the Radiotherapy.I ended up applying the dry wipe to the whole of the adhesive side of the Stoma bag, loading it up with cream, and holding it in place with smilies! But it did do the trick, its very, very good for healing the skin. I believe it also has a Zinc content. It looks like Zinc & Castor oil cream, rather like Sudocreme, so that probably helps with the healing. Huge Hugs to you, keep smiling! Shaz xxx
Lesley UK
21 April 2015 at 17:30
Hello there, I”m so pleased you are feeling better. I just wanted to tell you about my SIL Jean. In the late 70’s she was diagnosed with breast cancer and had a mastectomy and chemotherapy. two years later she was diagnosed with cancer in the other breast, and had to go through all the same thing again. Thankfully she’s a very calm person and took it a all in her stride. The next thing to arrive was cervical cancer, and the removal of her womb and other all parts including ovaries took place and then chemotherapy again. again she was totally serene while the rest of us were climbing the walls with worry. she then had quite a lot of years totally clear, then about 4 years ago she was diagnosed with skin cancer, which although unpleasant was treated and kept under control. Then 2 years ago it was bowel cancer.They kept her in hospital for 10 days before they thought it was safe to operate, then they did the same procedure that you had. I phoned every day to see how she was and on the 5th day I was told she had been sent home, and she was fine (well YOU know what that means) But she’s been great since and Friday is her 90th birthday ..I’m now battling skin cancer and I hope I have half her courage and belief in fate. Blessings.
Shoshi (in reply)
22 April 2015 at 00:21
Thank you for sharing about Jean, Lesley – what a lot she has had to endure! One of Mum’s carers has had 4 separate cancers and she has bounced back and is so feisty and I admire her tremendously. When she lost her eye through cancer, her husband left her… I hope Jean has the happiest of birthdays on Friday – she certainly deserves it! So sorry to hear you have your own cancer battle to fight. Shoshi
Anne
26 April 2015 at 20:41
Phew Shoshi I’ve been catching up with you. What a time you are having. I guess though that it will take time for things to settle and you find what best suits. I can only imagine the distress to you – I would be falling apart completely I know I would. After reading your latest trials I am ashamed of myself. I got in a state last week just because I’d got to go for routine mammogram – hate it – but compared to you – a walk in the park for me. Even worse I got in a state re what to wear for a wedding. How much of a baby am I? I always feel such a frump now ( and am overweight) so I hate having to dress up, have photo taken. DH was very patient and all was well and we had a lovely time – so I am truly ashamed of myself! Hang in there – I still pray for you every night. Hugs Anne x
Sue Windsor
26 April 2015 at 11:13
Hey! One of the Allerton 3 here! Just got around to reading your blog. You have the most amazing ability to recall so much detail of events-unreal! Have found it so interesting to read. It’s so uncanny that we never met until we were in hospital but in the build up we were taking similar journeys unknown to either of us-a diagnosis, the scans, the awful waiting for results, the discussions of surgery, the pre op assessments etc, the emotions,the days in denial, the surrealism of it all, the positive days, the wobbly days. I was so pleased to have met you and Elizabeth in hospital you helped me through everything and we had some laughs on the way. Remember Elizabeth trying to retrieve her slipper from under the bed without bending, and looking like she was going through some ballet routine hanging on to the side of the bed-I laughed so much my stitches hurt! I shall never forget you slowly disappearing from my sight when the air bed slowly deflated-just like the Gary Linekar crisp advert! Also do you remember those lovely sexy socks we had to wear, I drew a face on the ball of my foot so when I propped my feet up on the end of the bed you were looking at this little smiley face! Hope you continue to recover, will stay in touch. Sue xxxx
Shoshi (in reply)
27 April 2015 at 01:33
Thank you for visiting my blog and for leaving such a lovely comment, Sue!! You two really helped my stay in hospital too – laughter is definitely the best medicine even if it hurts like crazy to do it, immediately post-op lol!! When I went in, I never dreamt it could be FUN in hospital but you made it so – along with Cat and Sarah and the other nurses who came up to our end for a bit of light relief! We’ll definitely stay in touch. Let us know how you get on with your oncology appt. and treatment! Hugs, Shoshi xxx
Nannie4
30 April 2015 at 10:35
How perfect [the card]! Your hubby is awesome.
Shaz Brooks
5 May 2015 at 21:31
Hi Shoshi, N must have hunted high and low to find such a perfect card! I’m hoping Kermit is behaving well for you. Its surprising how fast the time goes past, isn’t it? Sending you both love & hugs, Shaz xxx
Caroly Saxby
6 May 2015 at 11:36
Dear Shoshi, I just wanted to pop by again and thank you for your message. I know how tiring it can be replying to messages and keeping up when you are unwell, (although uplifting) I do appreciate it very much. I fully know how the chemo may take it’s toll on you. I’ve had a hell of a year with a very close family member being very ill with chemo treatments. Be as kind to yourself as you can during that six months and it will pass. As soon as you are off the drugs again I hope you feel so much better. Keep your spirits up doing all your favourite things. May I also congratulate your husband for all that he does for you … the carers are sometimes forgotten but he is doing an outstanding job. Take care dear friend Shoshi, love Carolyn xx ps. no need to reply … just know that I am thinking of you! With love xx
Anne
6 May 2015 at 13:00
Hi Shoshi just popping in to say hello and see how you are. That card is fabulous- how clever and thoughtful of your DH. Hugs Anne x
