Devon IA Outing to the Met Office

I realised recently that it is a long time since I updated this blog. I am doing several posts today, to bring it up to date – each one will be dated as if I had done them at the time, to keep things in chronological order, but I am in fact writing them in early May.

The Devon branch of the Ileostomy and Internal Pouch Support Group (formerly known as the Ileostomy Association), Devon IA, had an outing to the Met Office on 9th March.

You can read about this on my main blog here. A most interesting afternoon out!

Devon IA AGM at Kennford

I realised recently that it is a long time since I updated this blog. I am doing several posts today, to bring it up to date – each one will be dated as if I had done them at the time, to keep things in chronological order, but I am in fact writing them in early May.

The Ileostomy and Internal Pouch Support Group (IA), formerly known as the Ileostomy Association, of which I am a member, had its local AGM at Kennford in Devon on 5th March. These meetings are always good to attend because you get to meet up with others in the same situation, meet old friends and make new ones. There is always a good exchange of ideas and experiences, both informally, chatting over coffee and lunch, and through discussion in the more formal part of the meeting. They have a table where you can put unwanted supplies, and take whatever you need, and they have the usual raffle and sometimes a quiz. There is usually a visiting speaker.

On this occasion we had a colorectal surgeon from the Royal Devon and Exeter Hospital in Exeter, speaking about hernias. A parastomal hernia is a very common problem indeed with ostomates, particularly people with a colostomy, and especially if they are older, and overweight, and being a smoker puts one at greater risk – the incidence of parastomal hernias is quite high, because the abdominal muscle wall is compromised by cutting a hole through which the intestine is brought out to form the stoma. He spoke about the problems of repairing them and how the risk of recurrence is high, and other measures that can be taken to prevent them developing. Some surgeons are now inserting a mesh around the stoma when the stoma is first created, and while this does strengthen the weak point, if further surgery is required (for instance if the stoma is reversed, or there are further abdominal problems requiring surgery) the presence of the mesh makes it a lot more difficult to operate. He spoke about synthetic meshes and also the use of pigskin!

A hernia can develop even through a simple activity like coughing or sneezing! In order to prevent hernias developing one should avoid heavy lifting, and if one has a severe cough, support one’s abdomen when coughing. There are various support garments that can be worn as well, but he said that these are more useful after one has developed a hernia than in prevention, although my stoma nurse did refer me to a fitter of support garments as a preventative measure.

He spoke about the anatomy of the abdomen and the different muscles involved. He said that in recent years, surgeons have tended to site stomas more towards the midline than before, and this could help in hernia prevention over time; being sited more towards the side of the abdomen, the musculature is weaker and more likely to herniate.

He asked for a show of hands and quite a few people indicated that they had developed hernias.

In the morning we had the business part of the meeting – the AGM, with appointment of new officers, financial report, etc. etc. and details of future meetings, outings, presentations by manufacturers, etc. Lunch was provided, and tea and coffee.

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!