IA Meeting at Ottery St. Mary

Recently, a problem has arisen between Windows LiveWriter, my preferred blogging software, and Google Blogger, and I have been unable to publish any new blog posts since then. Now, thanks to the valiant efforts of a team of volunteers, Windows LiveWriter (which Microsoft is no longer supporting) has been launched in an open source format as Open LiveWriter. The team has been working hard to iron out the various glitches over the past week or so. This is my first post using the new software, and is also by way of a test to make sure everything is functioning as it should. So far, there is no facility for adding categories, but we are hoping for this to be available soon, after which I shall edit this and subsequent posts to include these.

On 5th December, my hubby and I went to an IA meeting. I think IA used to stand for the Ileostomy Association but its full name is now “The Ileostomy & Internal Pouch Support Group” which is a bit of a mouthful but I suppose they felt they had to include the J-pouch folks who are also sans-colon and might feel left out!

A little while ago we went to a small open meeting and there was an IA stand there, and I thought for the moderate consideration of £10 or annual membership, I might as well join. They have a local newsletter as well as the national journal, and regular meetings throughout our area, although some of them do involve quite a distance for us to travel, so we won’t be attending them all. The chairman in a charming man whom I had met several times at various meetings.

The meeting on Saturday was interesting for us both because in the afternoon there was a fascinating talk given by a visiting speaker, on the major renovation works being carried out at Castle Drogo, one of our local National Trust properties – a real, solid granite castle designed by Lutyens in the early part of the 20th century, said to be the last castle built in England. What the speaker thought of the rest of the meeting, I have no idea, but I did speak to someone not long ago who’d been a visiting speaker at a similar meeting and they said their eyes had been opened – they had no idea what the world of stomas was like, and it was an education for them! I am all for stoma awareness, and who knows what these speakers will tell others, spreading awareness.

When we arrived, there was coffee, and then we had a marvellous cold buffet that was all laid out, and the opportunity to chat and meet new people. During the course of the day I spoke to one or two people who were very negative about their ileostomies and not at all well adjusted to bag life, and I hope I was able to help a bit by giving pointers towards having a more positive attitude to something that after all isn’t going to change, no matter how you feel about it, so you might as well develop a good one! This makes the whole business so much easier to live with, and turns what you once thought was a disaster into an adventure. One needs to emphasise the positive benefits of being an ostomate as opposed to a butt crapper!

After lunch, we had the talk, and then the meeting led by the chairman. He was soon to be going to the national meeting of the association, and wanted our opinion on certain things so that he could put our local group’s views forward.

The first thing was about hernias. People with stomas are far more at risk of developing a hernia than “normal” people because the strength of the abdominal muscle wall has been compromised by the creation of an opening. The NHS does seem to be waking up to the fact that prevention is better than cure, and from my own experience I know that the machinery is in place to provide us with support garments free on prescription. However, the suggestion is now being made that surgeons should put preventative measures in place during the initial surgery when the stoma is created, in the form of a circle of mesh to strengthen the muscle wall at that point, and our chairman wanted to know our views on this, and whether we thought this was a good idea. The response was pretty well unanimously in support of this idea, although one person did say they had this mesh, and it was rather uncomfortable.

A discussion then ensued about the length of ileostomies, and someone suggested that the “fashion” has changed over the years, from creating longer stomas to shorter ones, and even ones that were pretty well flush with the skin. This is not a good idea because it causes more leaks. A longer “spout” tends to cause the output to flow into the bag with less risk of it seeping under the flange of the bag and causing skin irritation. Kermit does not protrude very much and looks like a little rosebud, rather than the red willie that I was so terrified my surgeon would create – before my surgery I didn’t know why this would actually be better in the long run! Anyway, people were saying that it was now the norm to have a much shorter ileostomy, and more people were having to use convex bags to counteract the problem it creates.

After discussing future meetings, including an outing to the Met Office in the near future, he passed round a questionnaire about pouch deodorisers. He said that with the financial shortages in the NHS, the provision of these might be one of the first things to go from the prescription tariff, and he wanted to know our views so that he could pass them on to the national meeting.

The questionnaire asked whether we used these, and/or room sprays, and how often we used them (at each bag change, or at every bag emptying), whether family members complained about smell, and so on. We were asked whether these products affected our confidence and how well we dealt with life with a bag.

I think the NHS needs to remember that managing a stoma isn’t just about having the right bag to collect the output, but it is also about adjusting to a very different way of life that can really knock the confidence of many people. Going to the loo is a private, intimate thing and if we are more conscious of producing more smell than normal people, this can be a real worry, and even prevent some people from leaving the house, let alone living a normal life. It is about quality of life for the whole person, to enable them to return to as normal a life as possible. My personal view is that it would be a big mistake to remove these products from the tariff because they make a huge difference to people’s lives and how they feel about themselves.

Since getting around to posting about this meeting, I have been adjusting to my new cancer-free status after my all-clear scan result, and dealing with a lot of conflicting emotions (more on the Cancer Diary page of my main blog) and also suffering from more exhaustion than normal, which is probably a reaction to everything that has happened. Both blogs have therefore been rather neglected of late, coinciding with the LiveWriter/Blogger problems detailed above. Hopefully from now on, this situation will be rectified.

More About Convex Bags and Support Garments

This morning I saw the support garments lady at the hospital. I took in with me the wrap and pants I’d got from SupportX online some time ago, and she shook her head at them and said that neither was giving any real support at all, which I was pretty much aware of. I told her that the wrap kept rolling up at the back and was not wide enough top to bottom.

She suggested a proper belt with a Velcro fixing, and got several out for me to try, but again the back rolled up, and she said they were not really suitable for me, and that I’d be better with support briefs. These garments are all specifically designed for people with stomas.

We tried a pair of these and they were much better. They are made of very nice firm smooth stretch fabric and she said they would offer sufficient support to help prevent a hernia developing. Hernias are very difficult to treat and the operation is not always successful, and prevention is very much better than cure, and even though the support garments are expensive, they are a lot less of a drain on the NHS budget than a hernia operation.

She has ordered one pair for me to start with, and after a week or two, if they prove satisfactory, I can phone the number she has given me and they will order 2 more pairs. I am allowed 3 during one year, and she doesn’t want to waste my prescriptions by giving me 3 all at once, in case they aren’t right for me, but I think they will be fine.

On the subject of convex bags, after I spoke to the Coloplast rep at the open day back in June, I was told that I would be contacted once the new Sensura Mio convex bags were launched, and I would be sent some samples to try. I was told this would happen in the autumn. Not having heard anything, I phoned in October and was told they would be launched in November. I then heard that earlier this month someone on the stoma forum on Inspire had already got her samples, so I phoned again, and was told they would phone me, which they didn’t.

I phoned again last Friday and was told that someone would definitely phone me on Monday (yesterday) – they need to speak to you so they can fill in a form, getting information from you about the size of your stoma etc. so that they can send the correct samples out.

At 4 p.m. yesterday they still hadn’t phoned, so I rang them again and I was told that no way would I have been phoned yesterday because each request took 24-48 hours to process! She wanted to know who I’d spoken to, and of course I couldn’t remember his name… She could find no evidence that I had phoned at all! Honestly, I do get fed up with these firms that pass you from pillar to post and nobody will take any responsibility, and all they can say is, “They shouldn’t have told you that…” as if it is my fault!! I said I’d been waiting a long time, and had contacted them repeatedly, and I was anxious to get my samples asap as I wanted to be able to order them with my next order from my supplier if they were suitable, and I’d been deliberately running down my supplies. I told her yet again which days I’d be in and when I wouldn’t be available this week (I have 3 hospital appointments 3 days running) and she said she’d try and push for a phone call this morning (Tuesday) before we left for the hospital for my support garments appointment. Of course, there was no phone call.

She told me I might not hear before Friday! I told her that was a whole week on from when I’d first phoned them asking for samples. I really do think this is pretty shabby and I told her so.

I wouldn’t be a bit surprised if they phoned tomorrow when we are out. I wouldn’t put it past them…

I know they are inundated with requests for samples of these new bags, but I have been on the list to receive them since June, so surely I can hardly be considered to be at the end of the queue. I am wondering if I’m ever going to get them!!

Tomorrow I am going in to the day surgery unit so that my surgeon can examine my rectal stump under general anaesthetic. When I saw his registrar at the end of October he couldn’t see much because it was full of muck and pus, and it was rather uncomfortable having the proctoscope in for any length of time, so he said he would discuss it with Mr. Pullan who would probably want me in for a fuller investigation. I have to be there for 8 a.m. having had no breakfast. I should be home by lunch time, depending on how things go, and how soon I am over the anaesthetic and able to leave.

On Thursday I have my CT scan, and on 27th, bloods to be taken at the Ricky Grant (chemo) unit. On 30th November I am seeing the oncologist after she’s received the results of the scan and bloods, and I am hoping for the cancer all-clear! I counted up all my appointments this year since my diagnosis in mid-January, and up to and including the oncology appointment at the end of this month, the total is 49!!

Stoma Clinic Appoinment–Bag Advice and Support Garments

Recently I noticed that where the convex flange of my Coloplast bags sticks to my abdomen, it has been making the skin a bit red, and now that the moat has disappeared from around Kermit, I wondered whether perhaps I still needed to use convex bags, or whether I could return to the flat ones, so I contacted the stoma clinic and they arranged for me to come in and see someone after I had seen the surgeon at the hospital this morning about my rectal mucous discharge (see my Cancer Diary entry today for details of that appointment), as it was in the same department.

I saw Nita this morning, and she had a look, and said that my skin continued to look very clean and healthy, and that all was well. She said that Kermit does not protrude very much – we laughed when we reminisced how freaked out I’d been before my surgery, by the stoma clinic’s DVD with the young lady with the red willy on her tummy and how I’d asked Mr. Pullan NOT to give me one of those!! – but sometimes a bit of protrusion is no bad thing! She said that I should continue with the convex bags for now, but there may come a time when I could return to the flat ones. I do not mind either way, as I am happy with the Coloplast soft convex bags, and am awaiting the arrival of the new Mio convex bags – I just wanted to be sure they were still happy with how things were, so I was reassured. The main thing is to avoid the possibility of leaks, and if the stoma doesn’t have a very long spout, the convex bag does make it protrude more, so that the output is sure to go into the bag, and not seep out under the flange and start irritating the skin.

She said I had done the right thing, coming in to ask. If the skin redness gets worse, then it might be time to look again, but probably there wouldn’t be likely to be any change during the next two or three months.

When she removed the bag, she remarked on the banana flanges I was using and asked if they were the Trio ones, which I confirmed was the case, and how much I liked them. They are their Silex Flange Extenders.

I was also able to report that I was getting on very well with Patient Choice, my supplier, and how businesslike they were, emailing me as to when to expect my parcel to be delivered, etc. She was pleased to hear that, because she said that not all companies were that businesslike.

We also spoke about support underwear. I mentioned to Nita that I had been experiencing a bit of pain around the stoma and in my abdomen lower down, but that the surgeon had reassured me that there was no evidence of a hernia. People with stomas are much more at risk of developing hernias because their abdominal wall muscles have been compromised by the cutting of an opening, and support garments are a good idea to prevent hernias developing. The surgeon said the pain I had been experiencing could just be the development of some scar tissue – there may be some adhesions, especially as I have also had a hysterectomy (20 years ago) and there’s been a lot going on in that area, but it was nothing to worry about. Nita could see that the rather large SupportX pants I had on were doing very little in the way of support; even if they were smaller, the fabric was not particularly firm or stretchy.

A few weeks after I received the two pairs I’d ordered from SupportX, they sent me another two, which have remained in the drawer still in their original wrapping, so I took them in today and gave them to Nita to put in her cupboard in case anyone else wanted to try them.

She said we could do better than this, and suggested I came in to see the lady who does the girdle fitting, so I have an appointment on Tuesday 17th November in the afternoon.

Nita said that they were getting very good reports of the support underwear now available in regular clothing shops such as Marks and Spencer’s, Matalan and PriMark, and they were not expensive. She said in the meantime I could try those, so after my appointments at the hospital we went off and I got a couple of pairs of pants (they only had two in my size, but they will keep me going for now).

You can see that there is a lace panel on the front. The fabric the pants are made of feels very firm and stretchy, and I think they will offer a lot more support than the SupportX ones.

I told her that the SupportX wraps I’d been wearing at night were a perfect pain because they are not deep enough and keep rolling up at the back.

In SupportX’s picture it looks nice and deep but on me it seems about 2/3 the depth!

She said the girdle fitting lady should be able to provide me with something better, and in the meantime I told her I’d ordered some cheap pregnancy body bands from Ebay which I thought I would try.

These look a lot more generous! They were very cheap, so I hope they will be stretchy and supportive enough. They are supposed to support one’s back as well as one’s abdominal muscles, but we shall see.

Another advantage of these garments (and my main motivation for waning them originally) is that they hold the stoma bag in place so that it doesn’t flop about – this was something that used to bother me quite a lot at night. During the day, they help maintain a smoother profile so that the bag doesn’t show so much through one’s clothes.

Obviously I have had to pay for the belly bands and the Matalan pants myself (the were not too expensive either - £6 per pair), and I bought two pairs, intending to wear them over my regular underwear as I have done with the SupportX pants), but anything recommended by the girdle-fitting lady or the stoma nurse, manufactured specifically for stoma care, should be available on prescription. The products designed specifically for stoma care use often have a separate pocket to contain the stoma bag, keeping it out of direct contact with the skin, which obviously normal support garments available in regular shops do not.

This whole thing continues to be a learning curve! An interesting one, though. I have found the whole process both fascinating and educational!

Part of the problem is having to shop online for certain products, and not being able to handle them to see how stretchy and firm they are, and not being able to try them on. The advice of the stoma nurses is extremely helpful, though, and I am sure the appointment with the girdle lady will be informative and useful.

I offered my services as a volunteer to help anyone wanting to speak to someone who has a stoma, and she was happy to put me on their list. We had a chat about what it is like for people in the early days – I reminisced about my tears on the phone and in the clinic, when I felt totally unable to cope, and wanting to phone the hospital lab and ask for my colon back (minus the cancer!) so that it could be sewn back in and I could resume my life as a butt crapper!

There are times when one thinks one will never get to grips with the bag, as one’s body changes shape and the stoma shrinks, and you get leaks and skin irritation. All being well, and in the absence of other complications such as prolapses or hernias, suddenly things slot into place and one starts managing like a pro, and it just becomes part of one’s daily routine. I said how very comforting and reassuring it had been during those difficult times, to phone up (usually in a bit of a state!) to be told to come in and they’d fit me in, and they always managed to sort me out, calmly and efficiently, putting my fears to rest. She said that this was the bulk of their work, helping people out in the early days and teaching them how to manage, so it’s all in a day’s work to them! They are the unsung heroes of the colo-rectal world!

I hope anyone reading this, who is struggling through the early days, will be encouraged and reassured. It really is not that bad once you get used to it, and always remember that the stoma nurse is your best friend!

Do I Need to Change to a Different Bag?

On Friday I phoned the stoma clinic to see if they could fit me in on Thursday morning when I am due to see Mr. Pullan about my rectal discharge. They promised to phone me back but were very overstretched and understaffed, and I didn't hear anything until today. They say they can fit me in, and all I need to do is tell reception when I arrive, and they will be available once I come out from seeing Mr. Pullan. None of it should take too long.

The reason I want to see the stoma nurse is that recently I have noticed that my body has changed shape again and the moat around Kermit seems to have disappeared. Where the convex flange of the bag sticks onto my abdomen it is now leaving a reddish mark - not sore or anything, but it may be indicative that the bag is now putting undue pressure on my skin, and it may be that I no longer require a convex flange. I need to see the stoma nurse so she can have a look at it, and she will know whether I can return to flat-backed bags. It is now 7 months since my operation and I thought my body had stopped changing shape, but apparently not!

I have also noticed with the last two bag changes that there had been a bit of seepage of output underneath the flange. I am surprised there was no skin irritation, but it has been fairly thick output recently, and that may be something to do with it. I shall tell the nurse about this and see what she has to say.

When I spoke to the nurse on the phone today, I mentioned that I would like to go on their register of volunteers who are willing to meet with newbies and encourage them through their initial stages, pre- or post-operatively. I am managing so well now, and although I'm only seven months into my stoma journey, I know that I can encourage others on this path, and reassure them that it will get easier, and help them to come to terms with having a stoma. It is a huge change, and can be very frightening and daunting, but once one gets through the initial teething problems, there is no reason why one cannot live as full and normal a life as one did before.

Pelican Meeting

Today my hubby took me out which was lovely. I tend to get a bit stir crazy stuck in the house all the time, although I do love being at home, and I get a lot of contact with the outside world via the internet.

We had had a letter in the post a while back from Pelican Healthcare (who supply stoma products) saying they would be visiting our area and a small open afternoon had been arranged in a local hotel suite. This hotel, the Passage House, just outside Newton Abbot, is just next to the Passage House Inn where we have often eaten out, so I suggested we went out for a nice meal first, and then went to the meeting, and this we did. They have a carvery every day and we both opted for that - quite delicious!

Not very many people attended the meeting unfortunately, but the lady from Pelican remembered me from the open day in Newton Abbot a few months ago and was interested to hear how I was getting on. I had a long chat with the couple who run the local branch of the IA (used to be Ileostomy Assoiation but now the Ileostomy and Internal Pouch Support Group) which I decided to join today - I'd thought about it before and didn't see much point as I was getting a lot of help and support from the Inspire forum and from the stoma team at the hospital, but they have meetings several times a year with different speakers, and it's an opportunity to meet up with other ostomates and their spouses.

Light refreshments were laid on, and I had some good conversations with several people there, as well as being able to pick the brains of the Pelican representative about one or two things. I came away with a few samples and other bits and pieces, including the inevitable free pens and notebooks! Always useful!

I was keen to try their barrier wipes because I’ve been experiencing some problems with the Independence ones I’ve been using – sometimes the bag doesn’t want to stick on quite as well as it might, but the Pelican rep agreed with me that it might be that it wasn’t quite dry before applying the bag. I couldn’t remember if I’d picked up any Pelican barrier wipes at the open day a few months ago, and if I did, I didn’t put them on my comparison charts which was a nuisance. Anyway I shall give them a try, and if I like them, I may order them instead, next time I’m putting an order in with Patient Choice, my supplier.

I was also quite interested in their wraps, which the rep said were not as supportive as the SupportX ones I have got, but they did seem a bit longer in the body, which might prevent them rolling up over my bum at night! I think I need to do a bit more research into this before I order any more. I am entitled to six pairs of paints (ooops! I mean PANTS – that’s the artist in me speaking lol!) and four wraps per year on NHS prescription. I have four pairs of the pants which I think are really a size too big, and they are not very supportive, although they do keep the bag a bit flatter than without.

The IA is holding a local meeting in Ottery St. Mary at the beginning of December, with a visiting speaker from the National Trust, speaking about the renovation work at Castle Drogo which I know both my hubby and I will be interested in, so we shall be going to that. Lunch is laid on, and there will be the opportunity for conversation with fellow ostomates. The meetings are apparently quite well attended.

I am rather tired now after a quite busy day, but it was worth it. Always nice to get out of the house, and while the weather looked distinctly unpromising first thing (raining) and we decided to leave the buggy at home, it did clear up and was quite sunny but rather windy, so we didn't get wet.

I enjoy these meetings attended by fellow ostomates, and as time goes on, I am hoping to get to know them all a bit better, and make some new friends. A local support group is always a good thing, I think, and who knows – in time, I may be able to offer support and help to others!

Stoma Pants and Wraps

Today, at long last, my prescription underwear arrived. I think it says something about my life at the moment that I got really excited – I know, I know, I should get out more…

They are made by SupportX and I got them on prescription, free of charge. I ordered two of each to start with. Your yearly allowance is six pairs of pants and three wraps, but I’ve got enough to be going on with for now, because the pants will not be worn against my skin but over my normal pants, so I can have “one on, one in the wash,” as they say.

I have to tell you, these are NOT the most glamorous underwear you’ve ever seen by a long shot. The pants are enormous! I couldn’t stop laughing, especially when my hubby said they were sweet! lol lol!!

Are you ready for this?

The pants are deliberately made really high waisted so that the top doesn’t interfere with the stoma, and everything is adequately covered up.

Turned inside out, there is a separate pouch affair that runs across the front, attached at the sides, and you wear this closest to yourself, and slip the bag into the pouch, so that it is sandwiched between the pouch and the outer layer of the pants, keeping it away from your skin. It supports it and stops that dragging feeling when the bag is filling, and distributes the contents a bit so that bulges are less likely to show on the outside.

You an see that there are two holes at the bottom. These are for drainable ostomy bags so that you can, in theory, empty the bag without removing the pants. However, I am not doing this because I am afraid of making a mess!

I got the wraps to wear at night. They are similar to the pants, but more stretchy and tight. Again, they support the bag and keep it flat against you. I find that in bed, the bag does tend to flop about a bit and it sometimes wakes me up, and with the wrap, this should no longer happen.

Inside out, the wraps also have an inner layer so that the bag is sandwiched between two layers of fabric and held away from your skin. The hole is there to push the bag through – it doesn’t look very big but the opening is very stretchy, and there’s no problem getting the bag through it.

What did I tell you? Not the sort of thing you see in Vogue lol! I think I am getting old… Before I went into hospital I got some new bras and was horrified that they had THREE hooks at the back – I told my hubby they reminded me of the “ladies’ foundation garments” that my mum used to wear in the 1950s and he said that sounded like concrete blocks! He wasn’t far wrong.

I think it’s rather funny that I have multi-coloured hair and wear quite funky clothes, and nobody (except you lot of course) will know what horrors lie beneath!

Hope this has given you a good laugh. It has me. But at least I know that my “medical appliance” (doesn’t THAT sound awful – but it seems to go with the pants lol!) will be held secure and will be more comfortable, and it should help with the prevention of leaks, too.

Oh, the joys of being a Gutless Bag Lady… Whoever would have thought Shoshi would come to THIS…

My Final Scheduled Stoma Clinic Appointment

I had a stoma nurse appointment this a.m. and she expressed herself as extremely pleased at how things are. She was very impressed with how well the operation wound and Kermit have healed up, and how clean and healthy the peristomal skin looked. I have been using Coloplast SenSura soft convex bags for a while now, and have recently started using Trio Silex Flange Extenders which are a total dream – very thin, flexible, almost invisible soft silicone which peels off really easily without leaving any residue, and breathable.

Because I am doing so well, she hasn’t scheduled another appointment unless I want to come back, say after the chemo has finished in the autumn, or if I have any problems.

Since my surgery, I’ve had problems with mucous discharge from my rectal stump – a feeling of needing to “go” and not being able to bear down. Quite a lot of discharge coming when I’m on the loo, with sometimes a definite “plop” as the plug comes out. Sometimes it’s a bit pink with blood. The chemo makes it worse. I have tried a technique called “anal stimulation” which spinal injury patients use to help them evacuate their bowels. You push in a finger a short way and twirl it round and round to open the anus, allowing the content to escape. I use a piece of toilet paper, to do this, and it allows quite a bit of mucus to escape.

My surgeon said a lot of people have this problem post-surgery and that it may eventually clear up.

I have read that mucus is a natural discharge from the large bowel and rectum, which helps lubricate the stool on its way out, being absorbed by the stool in the normal functioning system. Once there is no stool to come out, the mucus is still there and has to come out. I have a short rectal stump and am amazed how much it can produce! While for some people this can stop eventually, it seems more logical, given the above, that it would go on forever because it’s a normal body process to produce it.

I spoke to the oncologist about it last month and she said I might mention it to my stoma nurse, and then she said, “I’ll phone her straight away and see what she suggests.” (They are so marvellous – everything I tell them gets dealt with straight away and they always seem to have an answer up my sleeve to help me through my various difficulties, but the secret is to tell them everything so that they know, and can help.) She came back to say that the nurse recommended something called “Micralax” which is a small plastic capsule with a plastic tube on it which you insert into the rectum and squeeze the liquid in – it is a mini-enema. You keep it in for 5-10 mins or however long it takes to soften the mucus and then this comes away when you go to the loo.

She gave me a prescription straight away, and I tried it that night, but was amazed how painful it was – not the insertion of the tube, but the stuff itself. I couldn’t bear to keep it in even for 5 mins. and after I’d expelled it down the loo (before it had really had a chance to work) my bum was sore for quite a long time afterwards. I’d been told to do this twice a week, and it was just as bad the next time, after which I phoned the stoma nurse.

She said that this stuff does tend to cause a bit of pain, but in my case it sounded more extreme. She said there might be some inflammation in the rectal stump, and to try using it once a week. It was still painful a week later when I used it but not quite so bad. She said if it wasn’t any good, we could try glycerin suppositories which are more gentle, and to leave it until my appointment today, when she gave me some suppositories to try.

The discharge doesn’t seem to be so bad at the moment. I do find that the discharge comes in waves – for a couple of weeks or so it’s a real problem, then it seems to disappear for a bit, only to return. It’s very unpredictable, but the chemo does make it worse. I shall be trying the suppositories when it returns again.

She said that if they work, I can get them on prescription via my GP, so no need to return to the stoma clinic for them.

I also enquired again about support pants and wraps, which I’d asked for some time ago and nothing had been forthcoming, and she showed me some samples from their store cupboard and gave me some leaflets to take home. She suggested I search the Internet and find something I like, and they will arrange a prescription from my GP. I have been resting (and sleeping) this afternoon as I am feeling very wiped out again after my chemo on Friday. I have not yet therefore had time to explore and find what wraps/pants I want yet. Eventually, once I’ve decided, and started with a couple of each from the manufacturer(s), my regular supplier will be able to provide me with them with my normal orders from them for bags etc.

The stoma nurse was impressed with how well I am, despite the chemo, and how well I am coping. We chatted about attitude, and how being positive, upbeat, keeping a sense of humour, and thinking of others, all help one enormously. I have every expectation that I am going to beat the cancer completely and make a good recovery from all the illness and trauma of this year. I said to her that it has changed me, and hopefully made me a better person, and I have learnt so much, and made so many new friends around the world, and unpleasant as much of the procedure has been, given my time again, I would not change a thing. I never, never thought I could ever say such a thing but it is really true. My life has been incredibly enriched through this experience.

While we were waiting for my appointment, and then afterwards when we came out, we met up with 2 lovely ladies (it turned out my hubby knew the daughter from where we used to live) – the elderly mother is a new ileostomate (since May) and is struggling a bit. My hubby and I were able to tell her quite a bit and he’s given them our number so if she wants to come over and have a session in what my hubby calls my “girlie bathroom” (lol!) she is most welcome, and I am sure I can help her. I told her several good suggestions I’d learnt on the Camp Crappy forum on Inspire, which were news to them both, and said I’d be happy to help with any questions she might have. I feel so great, being quite a newbie at this myself (just under 5 months post-surgery) but doing so well and now being able to help others get through the rocky first months of their own journey. I am so grateful to Camp Crappy which has helped me so much and helped me to be informed, and much more able to cope. This poor lady has very poor appetite so we are going to try and help with some nice tempting food ideas too – my hubby has been “feeding” me throughout and we know what’s good for stomas, and what is enjoyable and appetising when one is on chemo and not feeling like eating.

The stoma nurse loved my hair! I told her I’ve started telling people it’s a side effect of the chemo lol! I’m waiting for someone to say, “What are you on? Can I have some?” Hahaha!!

My First Prescription Parcel

Last time I attended the stoma clinic, the nurse set up my supply line to get the stuff I need for Kermit (my stoma) – bags and accessories. All these things are available on prescription on our wonderful NHS. The nurse ordered the things I would need for the immediate future and the parcel arrived in due course.

After this, it was up to me to place an order when I needed anything, and last week I did just that. After the stoma open day we attended in June, where we picked up loads of samples from different companies, I had the opportunity to try lots of different products, and decide which ones suited me best, so I knew what to order.

When the stoma nurse put in the first order, she sent a template for them to cut the bags to size, but when I used the bag that she cut for me that day, the hole was too large and almost immediately I was getting itching and skin irritation, so I removed the bag and cut a new one myself, and phoned her to let her know. I contacted the company and asked them to send the first batch of bags uncut, and I would cut them myself, which is what I have been doing.

I spoke to the gentleman at the company and said I would post him a template in due course, and that I would like my bags cut to this size thereafter.

The parcel arrived today, and all the bags are perfectly cut! Not only are they to my exact template, but they seem to have cut them with some sort of hot tool or laser or something because the cut line is extremely smooth and regular – far more so than I was able to do with scissors. I shall phone them in due course to tell them how pleased I am.

They have sent me 3 boxes of my regular Coloplast SenSura soft convex bags, and enough accessories to last the same time as the bags will last: adhesive remover wipes and barrier wipes by Independence; deodorising spray: NaturCare pouch deodoriser/air freshener spray in zest vibrant citrus by Opus Healthcare – I decided on second thoughts that this was preferable to my original first choice of the OstoMart mint drops, as the smell is gorgeous, and it doubles as an air freshener spray as well; and Silex silicone flange extenders by Trio Ostomy Care. I did not order any adhesive remover spray as I have plenty in the form of samples from the open day, and what the hospital supplied.

All the companies supply complimentary disposal bags and dry wipes, but I asked them not to send me any this time as I still have plenty supplied to me by the hospital.

The supplier I am dealing with is Patient Choice. They are a non-profit company which also supports ostomy charities. They have a service for collecting unwanted supplies and redistributing them free of charge to those in need. When I phoned through with my order, I asked about this, and they said they would send me a pre-paid bag to put things in and post back to them. I have got quite a few redundant bags from the days when I used flat-backed ones, and quite a lot of samples which I don’t want, and various banana flanges which the hospital supplied, which didn’t suit me. I also had a lot of stoma rings which I’ve never been able to get on with. All this stuff was taking up quite a lot of space in my storage tower and I am glad to be shot of them! I have packed them all up and they will go off tomorrow. It’s very nice to know that the stuff I do not want, but which is perfectly OK, does not have to be thrown away and wasted, but can be of use to others. I think this is an excellent idea.

So far I am very pleased with the company. They have been consistently friendly and helpful on the phone. They have been revamping their website, but this evening I was able to register online, and once I hear back from them I shall set up an online account and order my supplies from the website rather than by phone.

How the system works is that after a supplier receives the order, they contact the GP who issues a prescription, and then they fill it and post to you what you ordered. Easy peasy. The only thing to remember is to order in good time, just in case there is a problem with the post or something – one doesn’t want to run out of things, so it’s a good idea to order while you’ve still got plenty in reserve, especially if you are going on holiday, or around Christmas when the post can become unreliable.

Like many of the other supply companies, Patient Choice are not tied to any particular manufacturer. Whatever products are on the prescription tariff, they can supply. Everybody’s needs are different, and one’s list of supplies consists of products recommended by your stoma nurse as being appropriate for you, and your own personal choice.

An example of team work: between the patient, their stoma nurse, their supply company, and their GP. It’s a tried and tested system with the least amount of hassle involved for the patient, who after all has enough to deal with, managing a stoma, without having to stress about getting the stuff they need!

Naughty Kermit

Last week Kermit (my stoma) decided he was fed up with his goodie-two-shoes image that I’ve been putting about, saying what a good little stoma he was, and how well behaved he was. While I was still in bed I realised that a leak was imminent – I could see it creeping under the banana flange – these are flange extenders that give you a bit more security as they increase the area of protection around the bag, and can give you a bit more time to deal with a leak.

I got up to deal with it immediately, and as I started moving, the other side of the bag (with no banana flange) failed and started to leak – I staunched the flow with loo paper while I emptied the bag and prepared to change it for a new one.

The reason I’ve been having leaks (and much less since using convex bags) is that my body is continuing to change shape, and I’ve developed a crease on the right hand side of the stoma as I look down, and this is the danger area, so I always use banana flanges on that side. I am looking forward to the new Coloplast SenSura Mio convex bags to come out – the Mio bags have a very soft flange that moulds itself well to your body, and I think this will help me a lot in leak prevention.

Next time I order from my supplier I am also going to order some of their Silex silicone flange extenders which are extremely thin and flexible and the best banana flanges I have sampled so far.

I much prefer to choose my bag changing times when Kermit is not active – doing it to deal with an emergency usually means I have to deal with a leaky stoma while trying to clean up and get the new bag on.

When I took the bag off, Kermit did behave himself very well and I thought I was going to get away with it, but suddenly he erupted like Mt. Vesuvius and sprayed brown liquid down my leg and onto my slipper, onto the storage tower where I keep all his equipment, and down the bathroom wall! This is what is known on the Inspire forum as a “Code Brown”! This is the first time it has happened to me, and I am just glad that it happened at home, in my own bathroom, and not while I was out and about! I have read horror stories on the forum of people having to deal with major eruptions in the middle of business meetings! I always go out with an emergency bag changing kit, and a change of clothing for my bottom half but so far so good!

The only other problem I have with Kermit is wind – the bag can blow up like an airship at times! These bags have a carbon filter which is supposed to allow gas to escape without odour, but I don’t find they work at all. One bag I tried did seem to release a smell (the bag deodoriser I was using) but the bag still blew up. People on the forum generally say they are not happy with filters and often enquire about bags without filters, which seem to be few and far between.

When ostomates get gas, just like with butt crappers, the gas makes a noise when it escapes! While I can no longer fart like a butt crapper, Kermit does make some very interesting noises at times – nearly always when we have company! He knows. Stomas are like children and animals. They always let you down at the wrong moment! The other day I had a visitor and Kermit made a prolonged, high pitch whistle! At other times he makes little froggy croaky noises (hence his name). When I’m on my own he’s usually as quiet as a mouse.

The joys of life with an ostomy. You have to see the funny side and just deal with it. I always tell people, and make a joke of it if he makes a noise. Everybody who knows me knows what has happened to me this year and it’s no secret, and everyone is very understanding. If I’m in a public place with strangers, I just say, “Don’t mind me – it’s just my stoma making his presence felt!”

Product Review

I have just updated my Products page with a review of all the samples we picked up at the stoma open day last month, all listed in chart form, for anyone who is interested.

Pelican Select Convex Drainable Pouch–Product Review

After attending the recent stoma open day, I received a sample pack from Pelican, of three of these bags. Their representative phoned me the other day to see how I got on with them, but at that stage I hadn’t yet tried them, but promised to do so and let them know how I got on with them.

I told her that I was already using the Coloplast SenSura Convex Light bags and once they bring out the SenSura Mio in the convex, that will be my bag of choice, and I felt I should tell her that up front. She said that was fine, and they appreciate any reviews of their products because such feedback always helps with improvements in the future.

I put on this bag on Thursday so I have now been wearing it for two days, and I must say I am generally very impressed.

The convex flange on this bag is very soft indeed, and the backing sheet on it protecting the sticky surface is thin and flexible, with good measuring guides for cutting the hole to size. It is the easiest bag I have ever cut – really soft and effortless.

The sticky surface, called “Skin Protector,” is quite thick compared with other bags I have tried, and it has a foam back, which is extremely flexible. What impresses me most, apart from ease of application and comfort during wear, is that I have experienced no itching at all. On day 2, wearing the Colopolast bags, I do experience some itching under the glue; it’s not a major problem and isn’t caused by any reaction, and there isn’t any evidence of redness or the skin breaking down when I change the bag, but it is an indication that I will soon need to change the bag. With the Pelican bag, however, it has remained very comfortable and so far there is no itching at all.

The bag itself has an “anatomical” asymmetrical shape which is comfortable to wear, being curved on the outer edge so that it sweeps away free of one’s leg. The capacity of the bag is, I think, somewhat larger than the Coloplast bag. The cover is beautiful – it has firm feel to it which I knew would be unlikely to go fluffy with contact with one’s clothing after a day or two, as I have experienced with one or two sample bags I’ve tried, and this has proved to be the case. I am also very impressed with its opacity. The Coloplast bag, while it does have a flesh-coloured opaque cover on it (which again does not go fluffy), you can see the stoma output through it because it is rather thin, but with the Pelican bag, the cover is thicker, and nothing is visible.

It has a split in the middle, underneath which is the clear bag, and you can view the whole of the bag through this, and not just a “port hole” around the stoma, as with another bag I tried. It is very easy to see exactly where to place the bag over the stoma. (On this photo, you can see the thickness of the flange.)

The opening on the tail more closely resembles the Coloplast bag than any other I have tried, with the triple fold-up, and the winged tabs which are pressed down over the folded tail and held in place with Velcro.

I still like the Coloplast one the best, with its two rigid strips – the one on the underside of the bag is located below the one on the top, which means that when you empty it, there is a “step” that the output goes onto before draining away, and I find this easier to wipe with some folded toilet paper wrapped around the end of the bag, without getting any output on my hands. The Coloplast bag tail opens a lot more easily too, because the rigid strips are slightly stiffer, and you just press the sides together and it pops open. With the Pelican bag, the rigid strips are one directly above the other, and you squeeze the sides together to make a “U” shape:

and then pull on the little tab to open the upper layer towards you, which is a two-step process, and I find it doesn’t always work very well, especially when it is wet, because it tends to stick shut.

I couldn’t show a full demo of opening the bag because it required two hands and I needed one to hold the camera!

There is a very effective “fold up” system after you have closed the tail. As with the Coloplast bag, there is a Velcro dot under the opaque cover.

Once you have closed the tail, you fold it up, and stick the exposed Velcro strip between the two tabs, to the Velcro dot, and this holds the tail in place under the cover.

It folds up higher under the cover than on the Coloplast bag.

This is a good thing, because with the weight of the output, I do find that the Coloplast bag tends to sag at the bottom, and while it is still attached to the Velcro dot, it falls down below the cover and flops outwards.

The Velcro dot on the Pelican bag is also slightly larger, and has much tougher Velcro hooks on it, so is more effective. However, yesterday (1st full day of use) I noticed that the dot had come unstuck from its adhesive and was stuck on the tail, leaving the adhesive behind under the cover, and the cover has stuck firmly to it and is quite immovable, rendering the fold-up system useless; I don’t know if this is a one-off, and that it won’t happen with another bag, which I will have to try and see. Ed. 16th June after trying another bag: It is clear that body warmth softens the adhesive on the Velcro dot, which makes the Velcro dot slide off, exposing the sticky surface on the inside of the cover, which then adheres firmly onto the clear plastic lining of the bag. The two cannot be pulled apart without risking tearing a hole in the plastic bag. This renders the tucking up of the tail impossible because the cover remains stuck to the bag in the centre. This is a design fault which needs to be rectified – they need a different adhesive for the Velcro dot.

I am not convinced that the filter on the Pelican bag works very well; it is obviously letting some gas out (and I do produce quite a lot of gas!) because I am getting some smell from the bag. Fortunately it is merely the smell of the excellent OstoMart mint deodorising drops sample that I got at the open day – but I have never smelt anything from any of the other bags I have used. The gas is not dispersing fully, either; I still have to burp this bag to get rid of it. Ed. 16th June: To prevent any smell getting out, I have now covered the filter with one of the circular stickers they provided with the samples.

To be fair, I’ve never been convinced by filters on any of the bags I’ve tried; there is no evidence that any gas has escaped at all – odour or otherwise!

In summary, I must say I am very impressed indeed with this bag; the only drawbacks are the filter and the closure, and the failure of the system to tuck the tail under the cover, but these are minor gripes. The quality of the bag is excellent and once it’s on, you can forget it. I would definitely seriously consider choosing this bag above the Coloplast, but I am anxious to try the new Coloplast convex SenSura Mio as soon as it becomes available, and if it works as well as I am expecting, that will be my No. 1 bag of choice.

Ostomy Open Day

Until a few months ago, I had no idea that such a thing as an ostomy open day could even exist! I picked up a flier at the hospital advertising this event, which took place at Newton Abbot Racecourse – strange venue, I thought, not realising that they have a conference centre there.

It was a very interesting and exciting event. I was delighted to see all the stoma nurses there from Torbay Hospital, and was pleased to be able to speak to the nurse I saw the other day, to clarify a point I forgot to ask her. She said they had organised the event, and all the companies represented there had dealings with the hospital, and I could choose whatever samples I liked, and give them a try.

Coffee was served, and there was someone doing manicures, and plenty of people attended, so it was a lively event. It was particularly nice to be able to see a lot of the products “in the flesh” that I had only seen before online, and to talk to the various representatives and discuss different options.

We came home laden with bags of samples and fun freebies, and I spent quite a long time sorting through them and photographing them. Eventually I shall be reviewing and comparing the various products and putting these on my Products Page (see tab above), once I have had a chance to try them all, but for now I will show photographs of groups of items from the various companies.

CD Medical

PeelEasy adhesive remover spray, which has a revolutionary propellant system with the liquid in a bag inside the tin, and no propellant gases, which means the whole tin can be filled with the liquid. Also, it will spray whatever way up the tin is held. Also, PeelEasy adhesive remover wipes. I find that using the spray to remove the stoma bag usually leaves a little adhesive residue on the skin, and spraying onto a tissue to remove this is not as effective as using a wipe.

Emollin emolient spray for dry or irritated skin – not for use in the peristomal area, but for elsewhere on the body; CliniFilm barrier spray and wipes.

Colostomy Association

A couple of issues of this organisation’s magazine. Glancing at these (I haven’t had a chance to read them yet) it looks as if many of the articles will apply to ileostomates too.

Convatec Mouldable Pouches

Unfortunately I wasn’t able to speak to the representative about this product. Leaflet and free post-it notes.

IA (Ileostomy and Internal Pouch Support Group)

They had a delightful colouring book for children, to help them through what must be a huge trauma for kids, having an ostomy. The book would also help a child deal with a parent or sibling undergoing surgery and learning to manage a bag.

IA Journal, and an invitation to an upcoming local meeting. Nice freebies: pen, lens cleaning cloth, notebook, post-it notes. Nice colour scheme for their product line!

Independence

Leaflets, and a nice sample pack which included their adhesive remover spray that had a clever top which you twist to open, so you don’t have to fiddle around with lids; lemon and lime fragranced odour eliminator spray which neutralises odours rather than masking them when you spray into the air; AcuBond strips (banana flanges); absorbent strips – when inserted into the bag, they convert liquid output into a gel; barrier wipes and adhesive remover wipes; leaflet about SilBond silicone glue. They also gave me a nice pen.

Miscellaneous Items

Gellymate absorption tablets from Peak Medical (another output thickening agent); Crohn’s and Colitis UK information and local event flier; Morform gelling agent from CliniMed (another output thickening agent); Charter Delivery Service leaflet from Coloplast and another nice pen; SecuriCare “Can’t Wait” card to use in a queue for the loo.

Opus Healthcare

Three different NaturCare odour eliminator sprays in Lightly Perfumed (a very pleasant scent reminiscent of 4711 eau de Cologne), Unscented, and Zest Vibrant Citrus fragrances; LiftPlus Citrus adhesive remover spray.

Two small “pouch bridges” – little cubes of foam rubber with a self adhesive surface on one side – these are placed inside the bag to keep it open and allow the output to flow throughout the bag, to prevent pancaking. LiftPlus Citrus adhesive remover wipes; LaVera barrier cream with the most gorgeous lavender and aloe vera fragrance; SkinSafe barrier wipes; NaturCare IPD (In-Pouch Deodorant); DeoGel deodorising lubricating gel to help output flow throughout the bag, to prevent pancaking.

OstoMart

A large selection of samples: OstoPeel adhesive remover spray (blackcurrent fragrance); a sample box containing Astoa products (barrier cream, adhesive flange extenders large and small, mouldable adhesive ring seals thin and standard, and a leaflet); brochures and leaflets; OstoSorb odour neutralising absorbent gel; OstoFix security tape, OstoFix 80 and 40 security frames (I have had these supplied by the hospital and didn’t like their over-stickiness and the fact that they made my skin itch because they didn’t breathe); OstoClear adhesive remover wipes; OstoZyme odour-neutralising lubricating gel; OstoPeel adhesive remover wipes in raspberry, mint and apple fragrance; OstoGuard barrier cream; OstoGuard barrier wipe with lavender fragrance; OstoClenz no-rinse skin cleansing gel (for hands); another “Can’t Wait” card.

Pelican

It only occurred to me the other day the significance of the name – pelicans have pouches! Duh. They don’t keep poo in them, though. Leaflet regarding their delivery service; Release adhesive remover spray – I had some of this from the hospital when I first started, and it has a lovely fragrance of mint, with added Vitamin E for skin health; Release wipes; peg to keep one’s clothes out of the way; supermarket trolley token on a keyring.

I spent some time on the Salts MediLink stand, and they had several bags on display. This one particularly caught my eye; my friend Shaz has a great roll-up bag and I really wanted one of these, and this is the closest I’d seen to that. The gentleman on the stand gave it to me! Here is the bag rolled up and clipped shut.

Opened up, it reveals a number of zipped pockets, and a loop at one end, from which you can hang the unrolled bag to give easy access to all your supplies.

Here it is after I transferred all my travel stuff from my original bag:

This bag is going to be a lot more practical than the one I got from the hospital, nice as that one is. It is a fraction of the size and still holds all my stuff – with the exception of my Vanish laundry stain remover pot which I carry around in case I need to empty my bag in an emergency away from a loo, for example in the car – I have decided to keep that original bag in the car with that pot in it, along with my change of clothes. My hubby agrees this is a good idea, and it’s going to make a lot more room in the sling underneath my wheelchair which is now always full to bursting with all this gear!!

They gave me lots of nice freebies and leaflets about their MediLink supply service: anti-bacterial hand-cleansing gel – my hubby bought me some of this from the pharmacy recently and it has an awful sweet fragrance that I can’t abide! This one, however, is unperfumed (apart from an alcohol smell as you apply it, which disappears once it is dry), and it closely resembles the stuff in the wall pumps in the hospital. This is definitely my go-to stuff! Also another nice pen, a nail file, another lens cleaning cloth and a cool drinking water pouch! They also arranged to send me a decent pair of scissors with curved-up blades for cutting my bags until I get them sent ready-cut. This stand had some lovely stuff, and very friendly staff. They have a local office in Exeter. I have to admit they would be a nice supply company to deal with.

StomaWise

StomaWise is a UK-based charity which supports stoma awareness and provides OstoBears for children undergoing stoma surgery – each bear has a paediatric bag attached with Velcro over a lifelike little red stoma! The bag can be removed and replaced, for teaching purposes. They come dressed in pyjamas, like the children when they are in hospital, and being 16-inch bears, they are too large for Bear Factory or Build-a-Bear clothes (these bears are 14-inch bears) but StomaWise has an arrangement with Build Your Bear’s Wardrobe which makes clothes to fit these larger bears, and the children can get a 10% discount on the clothes when they register their OstoBear. I think OstoBears are the cutest idea, and I am sure they help a lot of children get through what is a traumatic enough experience for an adult.

Until recently, StomaWise had a forum on their very comprehensive information website, but this forum had to be closed because it was inundated with spam posts and they didn’t have enough volunteers to moderate the forum 24 hours a day. What a shame.

They also do pouch covers in a variety of designs. I made a donation into their tin and was given an ostomy awareness wrist band and another nice pen!

Suportx

I picked up some leaflets from this stand; they produce beautiful support underwear for ostomates, with a pocket built in to support one’s bag. The nurse has prescribed a wrap and two pairs of pants for me, and it will be interesting to see whether they come from this company. The quality seemed excellent.

Torbay Hospital

Finally, we picked up some leaflets from the Torbay Hospital stand. My hubby picked some up in my absence earlier, not realising I had these already – also I no longer require the low fibre/low residue diet one because I was only on this for a relatively short time post-op.

There were quite a few more stands from which I didn’t pick up any samples, freebies or info – these were mostly of limited interest to me.

At the end they called the raffle, and my hubby won two items! (He always wins…) He allowed me first choice, and I couldn’t resist this wonderful Moroccan Oil hair pack:

This stuff is frightfully expensive, smells divine, and works wonders on one’s hair! With his second winning ticket he chose a meal for two in a nice eatery – not sure when we’ll go there!

Good News on the Coloplast SenSura Mio Range!

I was thrilled to be able to speak to the rep on the Coloplast stand when she returned from lunch. I told her how much I liked their bags – my original bag in hospital was a SenSura. I am currently using Coloplast SenSura soft convex bags, and was very sorry to have to give up using their new SenSura Mio bag because my body was changing shape and I was getting leaks and required a convex flange; unfortunately the convex bag is only available in their original SenSura range, which is nice enough, but lacks the beautiful new cover of the Mio, and the slim, soft feel of that gorgeous bag. I wanted to ask if they were intending to bring the Mio out in the convex, and the lady assured me that they were – the company will be getting the first ones in the next two weeks, and they anticipate them being on the drug tariff (i.e. available on prescription) in the autumn. I am super-excited about this! I told the stoma nurse and she was pleased, and said I’d certainly be able to have these. The Coloplast rep said that until they were available on prescription she would be able to supply them to me free of charge, since this is a bag I definitely want, and they do not believe in depriving their customers of a bag if it is available but not yet on the tariff. This is great news! I shall be sharing it with my Camp Crappy friends because there has been some discussion recently about this – loads of people seem to want these bags, and not surprisingly – they are gorgeous.

It was a very, very good day. I never would have thought I’d get excited about such things but these days it certainly floats my boat! I am glad I went in knowing quite a bit about the different products, thanks to several months on the Inspire Ostomy Care forum (Camp Crappy – see links above) and from my own personal experience. While we were there we met some very nice and interesting people, both reps and visitors alike; I met one lady about to undergo surgery for a colostomy and I was able to tell her about Camp Crappy, and not to be afraid – she wouldn’t be alone, and there is a lot of help, advice and friendship (not to mention fun) on there, and I gave her this blog address.

One of the reps (unfortunately I can’t remember which company she represented) was intrigued by my wheelchair decorations and we got chatting about my blogs, and she expressed great interest in the Gutless Bag Lady. She said they do road shows, and if they were doing one locally, would I be interested in taking part? I said I’d be delighted. She said it was very much about stoma awareness, and she said her supervisor would be very interested in my blog – every now and again they feature someone’s story on their website/Facebook page. Great to spread the word!

Several of the representatives whose companies also run supply services confirmed that it is up to the patient to choose which company they go with, and they do not have to be tied to any one company. This is what I had been led to believe. Obviously they would all like one to go with their company but ultimately it is up to us, the patients, to go where it suits us best. The Salts MediLink rep said that they actually support and sponsor two of the stoma nurses at the hospital, and the nurses should not be dictating to patients where they must go – the thinking is that if you choose the storage bag you like, you have to go with the company that supplied that bag. I shall continue with the company “assigned” to me by the hospital for a while, but I do not feel obliged to stay with them if I feel I would like the freedom to choose elsewhere. I know one person who has tried several different companies and given them all a decent amount of business before finally settling with the one of his choice. Everyone I have spoken to about this has said that they have never heard of stoma nurses limiting their patients to only one company. The stoma nurse said to me today that all the companies represented at the open day were ones that the hospital had dealings with, and I was free to choose samples and products from any one of them – and surely this extends to using their delivery services as well. It’s no skin off the hospital’s nose, anyhow; all the companies supply all the products that are listed on the tariff so it really shouldn’t matter.

I am so glad I was well enough to go today. The past couple of days I have been feeling a lot better as the side effects from my first chemo treatment begin to diminish, and I want to take advantage of these “good” days.

Stoma Clinic Appointment

On Thursday 28th May I had my final regular appointment at the stoma clinic – up until now I have been attending fortnightly, and then this last appointment was three weeks on from the previous one. In the early days I was having to ask for emergency appointments in between, because of problems, but now that things have finally settled down and I am using the right bag to suit me, I do not have to attend again for the next three months. I am very pleased to have reached this stage at last, after a lot of teething problems (which I think everybody goes through in the early stages), because it’s good to have them behind me as I start my chemo. The chemo increases the stoma output and makes it a lot more liquid too, and I wouldn’t want to be dealing with this if I was still experiencing leaks and finding stoma management difficult.

At this appointment, the nurse discussed setting up my prescription for me. She told me the supply company would phone me in the next few days, and that she would send my prescription to my GP. After this, when I am beginning to run low on anything, I just have to contact the supply company direct and let them know what I need, and they will get the prescription from my GP, and in due course my parcel will arrive. Easy peasy.

She told me that in order to save the NHS money, my choices may be fairly limited. However, I know many people who are able to get both adhesive remover spray and wipes, and not just a choice of one, so it may be possible to ask for it and see what my GP will allow. If they say I can’t have certain things, so be it.

She has also ordered a couple of pairs of pants for me, and a wrap – I should be able to get more of these in due course – to hold the bag in place more securely and to stop bulged showing as the bag fills. I have found that it flops about a bit in bed, and a wrap will hold it in place. These will be sent from a different company so won’t arrive with my first parcel of supplies.

The nurse put a fresh bag on for me, and said that I had cut the hole too small – if there is no room for movement, one can develop granulomas which can bleed a lot and be a nuisance. However, as she cut it and applied it, the hole looked a lot bigger than what I had cut and I was pretty sure it was too big. She said she would send the template to the company and they would pre-cut my bags for me.

Over the next few hours, my worst fears were realised, and I could feel the itching and pain beginning again, and I knew the hole was too large. I left the bag in place until the following day and when I changed it, I was glad I’d caught it in time – the skin was beginning to redden, but it was not yet broken. I cut a fresh bag to the smaller size, and phoned the nurse to tell her what had happened. I asked that she phone the suppliers and ask them to send my first batch uncut, and I would forward my template to them in due course, and she was absolutely fine with this.

It was a very satisfactory appointment.

Yesterday the company phoned me and we discussed this, and other matters.

New Froothie Optimum 9400 High Speed Blender

My wonderful new blender arrived this morning! Having done extensive research over the past few weeks on whether I really needed/wanted such a machine (the answer was yes!) and then which machine to purchase, I finally made the decision, and went ahead and ordered it.

I had originally been drawn to the NutriBullet but various reviews online suggested that it didn’t do such a good job at getting things completely smooth, and it really wasn’t as sturdily constructed as the more expensive machines, and also was rather small. I’d rather put off thinking about the VitaMix which everybody has been raving about, on grounds of the cost, but it really is a superb machine and would answer my needs.

While looking at different reviews of this one, I came across one entitled “Don’t buy this blender” on Google, so I hopped over for a look and found myself on the Froothie site, looking at the Optimum 9400, which superficially looks very similar, but which is faster, more powerful and best of all, cheaper! I decided this was the machine for me, and if you explore the site you can see just how impressive it is – it will even crush rocks!!! (Not sure which is more stoma-friendly, though – granite or limestone…)

http://www.froothie.co.uk/optimum-vs-vitamix-vs-blendtec-comparison-review.html?gclid=CKv6jZuawcUCFejJtAodcHgAYg

Since hearing that I needed an ileostomy, I was grieving for all my favourite foods that would no longer be available to me because of their fibrous nature and because they would be likely to cause blockages: fresh pineapple and mango, coconut, nuts, seeds etc. Even though I may no longer be able to enjoy their lovely textures, I can at least enjoy the flavours I have been missing.

Of course, a blender like this does not remove the fibre; it merely pulverises it, so I shall have to be careful, especially initially, not to overdo the fibre intake or it might cause a blockage. I’m going to take it slowly, and my first smoothies will be small in size, and sipped slowly!

I will be able to make smoothies, nut milks and butters, soups, and all sorts of good things. The machine comes with a nice little recipe book full of healthy dishes, and of course there are masses of recipes online.

Now all I have to do is collect together some suitable ingredients and get started!

A Good Stoma Clinic Appointment

The second of two posts for today.

This afternoon I had another scheduled appointment at the stoma clinic. I had spoken briefly on the phone last Tuesday with one of the specialist colo-rectal nurses about my problems with one of the HCAs and asked that I didn’t see her again, so I was a bit alarmed that she appeared to be on duty at the clinic today. I asked the receptionist who I was due to see, and he told me it was one of the CNS’s (Clinical Nurse Specialists) so I was relieved. The receptionist knew me by name, which was nice – but it does indicate just how much time I am spending in that place!!

While I was waiting, Dr. Johnston, the gastro-enterologist came through, and I had a nice chat with him, and while we were talking, my surgeon, Mr. Pullan, also turned up, wearing his scrubs! We all had a nice chat, and he said how well I was looking after my operation. I told them both about the six months of chemotherapy that I am facing and they both wished me well, and agreed that I have to look on it as a positive thing, making sure that all the cancer is gone for good. Nice to see my two favourite consultants!

My hubby was still parking the car when I was called in for my appointment. I was able to have a more detailed conversation with the nurse about the problems I had experienced with the HCA and she said she was sorry this had happened. I told her that I did not like to complain, but I felt it was important to let her know how things were, in case someone else was also affected, and I also had the opportunity to give her some specific examples. I repeated my request that I did not see that HCA again. I was glad my hubby was not there because this sort of thing makes him very uncomfortable (not that I enjoy it much either!) and he would much rather I left things alone and put up with it, but as I said to him, this is too important, and I need to have confidence in those who are caring for me, and sometimes things need dealing with, however unpleasant it might be at the time; in the long run, the benefits outweigh the temporary discomfiture. I feel very much better for having done it now, anyway, and the nurse was very understanding.

I then told her about the problems I’d had over the past few days. She took the bag off and said I still needed a convex bag. I told her how much I would like to go back to a flat one, because I so much liked the Coloplast SenSura Mio which is not yet available in the convex version, and she said that some people are able to use a flat bag again eventually, because after a period of time using the convex bag, the stoma gets pushed forward more, but it doesn’t happen with everybody. I said I didn’t mind, as long as I could have a decent convex bag, and I would certainly want to use the SenSura Mio convex if and when it was available.

She had another HCA helping her, who was also lovely and not at all like the other one! She made several trips to the cupboard for supplies for me, and the first convex bag they produced (can’t remember the name) I rejected almost at once, because the tail was horrible and it was a fiddle to undo, and like the OakMed one, it only had one rigid plastic strip so I could see myself getting output all over my hands again. The nurse suggested the Coloplast SenSura Convex Light bag – this is the convex version of my original bag, and I jumped at that one.

The tail is identical, and I really like this. It has the two rigid plastic strips, and when you press their edges together, the bag springs open beautifully, and I like the Velcro fastening wings too. This bag has a good viewing window, with the outer cover being divided so that you can lift it, and the top half of the bag under the cover is transparent. This is better than the Salts bag which was only transparent over the stoma itself. Another thing I like about the SenSura bags (flat and convex) is the fact that the edge of the flange is transparent, so you can see if a leak is advancing towards the edge, and deal with it in time.

The convexity is softer, and less pronounced than on my previous bags, and this is a good compromise between the rather hard and rigid deeper convex flanges and the flat bag.

One slight disadvantage is the paucity of measuring rings on the flange, which makes cutting it to size a bit more difficult, but the nurse gave me the backing sheet from the bag she put on me, to use as a template. She cut the hole circular, not worrying about the slight bulge on one side of Kermit, and said that it shouldn’t be too tight a fit, or the stoma might develop granulomas (small nodules which form as a result of friction from the bag) and these can bleed a lot. She cut the bag to around 28 mm.

I told her I was running out of some of my supplies, so in addition to supplying me with plenty of the new bags, she gave me a new pack of Conti wipes (these are the dry wipes that you can use either dry, or with water, and they are larger than a lot of the wipes supplied by the manufacturers of stoma care products, and you can cut them in half and get double the amount!), and plenty of barrier wipes (which the previous HCA had considered unnecessary!!).

I haven’t tried these Pelican barrier wipes, but my first adhesive remover spray was by Pelican and I liked that very much.

Finally, she gave me some more banana flanges to replace the few OstoMart ones I had left. I said I didn’t like those much because they made my skin itch (there are some small red spots where they had been) and she said she didn’t like them much either – a lot of patients had experienced skin irritation from them because they are far too sticky (even with adhesive remover spray they are very hard to remove) and do not allow the skin to breathe. She produced some by Salts instead.

These are thinner and more flexible, and although they look rather opaque when you first apply them, with the warmth of your body they become more transparent and adhere better than initially. They contain aloe vera and are a lot more skin-friendly than the OstoMart ones. Eventually I would like to get the Trio silicone ones through my supplier because these are a dream to use, but the nurse said they don’t deal much with Trio, because they only do accessories and the GPs are apparently pressing them to cut down on prescribing too many accessories. (The other HCA was just dismissive of Trio products and said, “We can’t stock everything…” and “I saw them at a trade fair and wasn’t impressed…”)

These banana flanges have backing papers on both sides. You remove the first one and apply the banana flange as normal, and then remove the top backing sheet, exposing a wafer-thin transparent strip which flexes with your skin and is breathable. I love these!

When the nurse removed my bag, she used plenty of adhesive remover spray without my having to ask her, and she peeled it off slowly and gradually, and I felt quite relaxed about it. She had no problem using barrier wipes either, but said the powder should only be used if the skin irritation was so bad that the surface of the skin was broken and moist, because otherwise the powder would not stick.

She said that we should now be thinking about getting a prescription set up for me, so that I can start receiving supplies via a home delivery service. I quite agreed, but said that things were still constantly changing, which was getting pretty boring! She said there was no point in setting up a prescription if the next week it had to be changed again! She has made another appointment to come in three weeks’ time, which will be on the same day as my follow-up appointment with Mr. Pullan, my surgeon, and hopefully by then, things will finally have settled down.

She warned me that the chemotherapy might affect the stoma – not necessarily its size or shape, but quite likely the output, which can increase in quantity and become much more liquid. She said I may need loperamide (Immodium) to help with this, but I said if I could correct the problem with jelly babies, that was preferable! (How I wish jelly babies were available on prescription!!) For the moment, the output is quite thick, which she was pleased to hear – although I did say I thought my blow-out this morning was partly due to pancaking because it was so thick!

As we left, both the nurse and the HCA were very sweet, and the HCA said, “Nice to see you again.” I said to my hubby on the way down, “What a great appointment! That’s how it is supposed to be!” I certainly didn’t feel like that on the previous two occasions! Coming out this time, I felt I had had a very positive experience, my questions and observations had been listened to carefully and responded to in a considered way; the atmosphere was friendly, and there was decent dialogue. Should be expect anything less?