Stoma supplies

Hi Tizz101 

Stoma supply companies basically all are suppliers of the same products, so you will likely get lots of different answers on who people prefer and why. I have changed suppliers twice before due to mistakes made with orders etc but have been with my now preferred company-Respond- for several years.

I travel regularly with 2 stomas, and no, my bags don’t inflate on flights. We’ve often had discussions in the stoma support group about travel and can give lots of tips-so you may want to join that group too and pose your question there. This is the link

Stoma Support Group

All the best with your upcoming surgery-there will be lots of support for you here and in the stoma group from those of us who have been through this.

Sarah xx

Thanks for that information.  Will join the stomas group

Hi Tizz 

I used a number of bags before I found the right one , it's trial and error I suppose. I was apprehensive about how well it would stick to my skin, one stuck better than the other. I then discovered that if i shaved around the outer area (not close to the stoma itself) it stuck like glue. There are also tapes that you can get supplied that go round the outer edging which give you more confidence. 

Nightbags should compliment the stoma bag you decide to use . My nightbag tube is really flexible which is good aside toss and turn alot.

Wishing you all the best for July and keep us updated and don't forget to ask anything 

Mark

Hi

I always use Fittleworths, but as pointed out, most suppliers use the same products.

Stoma supply is quite political as these days it has been outsourced to commercial companies. Sometimes the supplier also manufactures the bags etc but not always. The mechanics are simple - stoma nurses are employed by the companies but work in the NHS. Very few are still employed by the hospital you have your op done in. 

In my case they were not outsourced and they were very good, making sure for example that I was not allergic to the bag they chose for me before the op. They did a skin test a few weeks beforehand.

On discharge they gave me a week or two's supplies (and provided more when I couldn't see my local nurses for a while) then they signed me up to a delivery company (Fittleworth) to do the regular deliveries.

My local nurses who are linked to a company) persuaded me to use the bags they usually used - from that company. And at first they were OK but I'd forgotten to make them do a patch test and I was allergic to the adhesive and the adhesive remover spray. 

Lots of bleeding sores meant, even after they changed me back to my original supplies, I didn't get as comfortable with the old bags again for a long time and had leaks. I wasn't upset with the nurses who are all very kind and helpful but it wasn't a good situation.

You then need to know that your GP liases with the stoma nurse who writes your prescription and if anything changes the nurse has to approve it. And the supplying company liaises with the gp to get the prescription and put together your order. I have heard that in some areas patients have to do some of that liaison but fortunately not here.

You have to re order in good time (usually half-way through your last order because in my case it takes 2 to 3 weeks for the courier to bring the parcel).

It works fairly well but there is nothing very 'just in time' about the process and I have 2 big plastic crates to keep everything in - 1 for current stuff ie open boxes of bags, drywipes etc and the other for the rest of the order.

I attended a meeting a month or so back where a group of us stoma people: colostomy, ileostomy and urostomy  talked to some consultants about this set up. I learnt that the NHS has hundreds of these sorts of appliances on their lists, most GPs don't really know much about stoma bags and the NHS would like to streamline things to save money. For example, those with colostomies told us that they used to be able to order deodorising sachets for their bags but now couldn't. Something to look out for.

One stoma nurse told me something interesting. As urostomies are long term ie can't be reversed like colostomies and ileostomies sometimes can, the supplying companies look at us as 'cash cows' as we can go on getting stuff for years.

The companies do compete for all users though which is why you may find you get sales leaflets from other companies after the op to persuade you they'd do things better. From talking to nurses and these other patients most of these delivery companies are about as efficient as each other.  But if you have a bad experience it is worth changing. 

One day, I would like to understand how much stoma supplies actually cost the NHS. But that will have to wait.

Sorry for length but as they say, knowledge is power.

All the best,

Latestart

Hi latestart 

That's Interesting.  My first two visits to the stoma nurse were outsourced one of the nurses had previously worked for the NHS for 20 years.

After this I was referred back to the hospital were I had my last vist in an adjacent ward to were I had my operation.

On the commercial side, I was offered a company who would cut the bags and bring them directly to my door once I put in my prescription but I declined this. I now order through my doctors the script is ready the next day. My local chemist picks the script up from the doctors and orders it for me. If I order on a Monday I can usually collect from the chemist on a Friday.  Its not a bad system I suppose 

Best wishes 

Mark

Wow thanks for all that information.  I’ll have to wait and see who Guys signs me up with.

i would also  love to know how much it all costs the NHS

You're very lucky its so straightforward. My chemist isn't involved at all - I often wish he was. AT the meeting I mentioned the biggest problem we all had was never being certain when the delivery would happen and they all waited 2 or 3 weeks at least. - some people had run out before it arrived. Of course the delivery companies usually next day courier the item you need urgently but that lack of security is the worst thing about most peoples' experience. The next was having to find space for large boxes of stuff as a result.

Gosh, that’s astonishing-my delivery is 2 days after my order. My delivery company text me to confirm a 2 hour slot for delivery on the day. I had no idea that others didn’t have the same kind of service.

Sarah xx

Hi Sarah,I’ve had to wait more than 10 days before.I have also had the health centre being very unpleasant regarding the amount of bags I needed.I use coloplast and phone them with the order.The health centre can be slow in agreeing to it.Jane x