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.
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.
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!
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.
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.
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.
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.
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 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!
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.
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.