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.