Ostomy bag usage in the UK - Frequency and cost concerns

I am asking this question because of the recent phenomenon of being told I am using too many bags by my GP! I suspect it's because of the costs and related to the recent cutbacks due to the austerity thing! See other posts on this site on the subject of people not getting their bags on time.

Just in case your government is pushing austerity... and cutting back...

I am not in Britain but I can tell you all bags are not made the same way... and some are reusable and some are not... I tried some... Hollister New Image... is one that I am pleased with... and is really washable and reusable... others have mesh lining which is useless...

I do not know how some GP can tell you... (you are using too many bags)... is a dumb thing to say... gee... people eat differently... some get sick... flu... the list goes on...

Like when I travel... I order 3 times the amount I usually order... just in case...

It is time to get the IOA involved... as you have rights... I left a link on the original forum on this topic... but there are bags out there that are reusable... and can be cleaned easily...

Cecille: I am not from the UK, but I'm curious as to an average number of bag changes from other people. Can I ask you how many times you change your bag?

I use Hollister New Image two-piece system and I change mine every 4 days. On a rare occasion, I can make it to 5, but the putty ring is harder to remove from my skin if I wait that long.

I can't imagine being "dictated to" as to how often you are allowed to change. I fear this with Obamacare!

Anyone else out there care to add how often they change their bags?

EDIT: I should add that I change the whole system every 4 days. I should have clarified that.

Hi: I am not from Britain, but am Canadian. I change my bag when I change my flange, which is every 4 days. I have a pouch (bag) that has a clip on it so I can empty it when I feel like. R

I am also using Hollister two-piece convex. I was changing every 3-4 days. 7 months ago, I started changing the whole set every two days and now change the pouch every day. As Medicare only allows 20 pouches per month (I did write my congressman about this, no answer as of yet), I have to buy the extras on my own. I had a lot of infections after RC and IC (two years, two months) ago. I just feel more comfortable going this route now. I believe in the UK they are allowed enough to change every day. I know they have some new rules there now, so I don't know if this has changed.

Avoiding Ostomy Bag Leaking | Managing Ostomy Leaks with LeeAnne Hayden

Claire59: Can I ask what you mean by RC and IC?

I'm in Canada and supplies aren't free, but I change my appliance every 3-5 days. It really depends on the appliance - some regular wear wafers won't stick for me after 2 days.

RC - Radical cystectomy due to bladder cancer, bladder and urethra are removed. They also did a hysterectomy and IC - Ileal Conduit which reroutes urine through a stoma into a bag.

I wouldn't fear ObamaCare disallowing a reasonable amount of supplies.

At the beginning is when I really ran through my supplies and my ostomy nurse laid into me about that. ... But for more reasons than one, I ended up changing my bag sometimes twice a day! So glad I made it through that phase.

When I got really used to things was pretty right before my reversal. I was changing twice a week.

Cecille, I live in Canada. I use Coloplast convex flanges and closed pouches and insert a liner. I dispose of the liner about 2 or 3 times a day. I manage to stretch the need to change the flange and the pouch to every 6 or seven days. I had no luck with the Hollister convex flanges; they started leaking after one or 2 days and that just got too expensive. It took a lot of trials to get it right and was very frustrating at times. Talk to the representatives of the companies, they are very helpful and send you samples to try out. There is a huge difference between one and another. Guess we all have different needs. Good luck.

Hello Cecile,

I change my bag every 4 to 5 days. Actually, I put all new appliances every 4, not 5, days. My bag is open, so it's easy to empty when needed.

Hi Cecille.

I'm in Britain and haven't encountered any problems obtaining my bags, yet. Pretty poor form from your GP questioning the amount of bags that you use and suggesting (no matter how nicely put) some form of rationing.

May I suggest that you reflect the question back at the GP and ask if they would feel confident wearing a bag that contained fecal matter if they felt it could leak at any moment.

Confidence and self-esteem is everything when you have a stoma. I doubt that they could argue against that.

I would also ask them if the government and NHS have issued guidelines on the issuing of stoma products to patients.

I very much doubt that they have? (I could be wrong)

Do you have a stoma nurse in your area?

They might be the best person to ask regarding this matter.

I change my bag as and when required, although I suppose the average is about every three days. If I'm going out then I tend to change the bag more often. It's a strange thing to say, but sometimes there's just a feeling that something is not quite right and in most cases this has proved to be the case, as on removal there is usually a tiny bit of seepage starting to creep under the seal.

Had my stoma for 36 years and I'm still slightly paranoid about leakage and odors. Not sure if GPs appreciate that you need to feel that you have some confidence in the product you're wearing before you step out of the front door.

Crikey, if I've had very bad diarrhea, I sometimes get through ten bags in a day.

Best of luck Cecille.

(You sent a very kind reply to one of my posts recently.)

Thank you for your explanation, Claire59. I do hope you are doing well, and I wish you the best.

Hi, I had an ileostomy 4 years ago and bag changes vary depending on output. Usually, I manage about 4-5 days, but I always change as soon as I get any itching as that seems to be a warning that it's starting to leak around the edges and it's going to leak. I started using mouldable rings, and that has really increased the time between changes. Before that, I was having to change every day.

Hi, I do live in the UK. I generally replace my bag twice a week (Coloplast one piece) and have no trouble getting these. In fact, I am badgered by my supplier to order more than I need. However, the GPs are reluctant to prescribe other sundries as readily.

Hi Cecille

I live in Worcestershire in the UK.

I use a Coloplast SenSura two-piece drainable system which I change every two to three days. I get a repeat script every month through Lloyds Chemist, which supplies me with twenty baseplates and thirty pouches. I also get medical adhesive remover too. Every few months, I miss a month or two so that I don't build up a massive stock of supplies.

So far, I have never had any issues with my GP... but then everything is done through the chemist. When I collect my script, I tick on the repeat what I want for the next time and leave it up to them!

Hi Cecille,

I am in the UK and have not had the same issue as you've encountered.

In reply to your question, every 3-5 days as most others have said.

It is interesting you say this with regards to money spending etc as my 59-year-old mother was told she would have to go private for allergy testing and this was not available on the NHS. Now, me being a firm believer that Google is a great tool, I searched to see if this was correct. After a short amount of searching, I found an NHS hospital fairly local that provided allergy testing (if referred to by GP). I firmly believe the doctor didn't refer because it costs the surgery money. In fact, in all the years, I have never heard anything good about the service the local surgery offers.

Hearing some of the horror stories about GPs these days, I'm glad I don't have a conventional GP as such due to my work. However, I do have to build up a stock as supply contracts change regularly, so sometimes it takes a day to get items in and sometimes it takes three weeks or longer.

Hi

I am in the UK and I change mine everyday, I didn't like the two-piece ones so use drainables. I have been lucky that when I have phoned for extra due to a month-long holiday in Asia they were fine. I did have a little problem when I first moved GPs after a house move with them being slow to fill the prescription but the stoma care company were lovely and sent samples just in case.

Hi there, I live in the UK. I have a urostomy and nowadays change my flange every 2 days. It used to last longer, but these days it does not. I put on a new bag every 3 or 4 days as well. I use Coloplast Sensura. Additionally, I use night drainage, which some people don't like. I have had my stoma all my life, so I don't know any better. Luckily, all my doctors have never questioned what I would like to order. Of course, we can also have support garments for the stoma for free. Sometimes, I wear one of them. It does keep my bum nice and warm too. Mike xx

Cecille,

I am in the UK and I change my drainable one-piece bag (Salts XND1325) usually every 48 hours, sometimes more often. My stoma nurse told me that 48 to 72 hours is the maximum they recommend using this type of bag. If your GP thinks that you are using too many bags, he should have referred you to see a stoma nurse to ascertain if your bags are the best ones for you.

Take care

Hello Cecille

I live in Scotland which comes under the National Health Service of the UK. I order my bags through Charter Healthcare who deal directly with my GP for my prescriptions.

I have had a colostomy for seven years now and after trying several pouches, now use Coloplast Sensura drainable which I drain when needed and change once a day, sometimes more if I have an upset tummy.

I think it is ridiculous to expect us to be all the same. Before we had the pouch, everybody went to the bathroom at different intervals, some daily, some weekly....it all depends on your digestive system, your input and output. I liken it to how many nappies (diapers) do you need/use to change a baby... nobody is the same and every circumstance should be catered to to assure hygiene, comfort and confidence.

Francine

Hi Cecille,

I'm based in London, UK. I use a Dansac Converse one-piece, which I change every other day. I can't believe other people wear their bags for so long! As soon as I have a bath or shower, the edges peel up, and I just don't see any need to risk a leak...so that's an average of 3-4 bags a week.

I think GPs have a detached view of how things work (by their very nature, they are not specialists). My stoma nurse said it was fine to change my bag every day if I wanted, and my stoma care suppliers (AlphaMed) supply however much I ask for. I don't go through the GP at all.

Hope you are not put under any further pressure!

A very big thank you to all the people who so kindly replied to my question about how often pouches should be changed, and who have described the kind of supplies they use. This has been a great help.

When the Ileostomy Nurse visited me in 2009 when I was new to all this business (after the dreadful almost fatal accident which ruptured my ileo-rectal anastomosis for Crohn's Disease, which I'd had done privately in 1982 to avoid having any kind of ostomy, and which was a very successful operation) she said I should change the pouch every day if necessary but never to leave it longer than 3 days. I was supplied with some pouches that were made in India and which had very strong adhesive, but I was never given enough medical adhesive spray to get them off. This resulted in large areas of raw, inflamed skin and painful skin infections requiring hospital treatment and umpteen courses of antibiotics! I was then very grudgingly offered more sprays to use! After complaining about the Indian pouches, I was switched to some much better different ones made in Wales, UK. However, they leaked very easily, resulting in many embarrassing accidents, both inside and outside the home. It was then I was told about the security strips! I have been using these since 2010 and they have made an amazing difference to my life and feelings of confidence, because if I detected any leak was about to happen, the security strips would usually stop any serious emission of the pouch contents until I could change to a new pouch.

Everything was going well until late last year, when I made my usual telephone call (or sometimes an email) to Charter Healthcare who supply the bags directly to me in the post in a large cardboard box, containing the pouches, security strips, in-bag deodorant and medical adhesive remover. I assume all this is very costly and I always thank my lucky stars I am in the UK and am eligible for free supplies. I usually order plenty of supplies because I never know how many bags I will have to use. Some bags only last hours; others occasionally last as long as 3 days. The thought of running out of bags causes me huge stress, which is the reason I order a large amount. I don't order the next lot until I only have a few bags left.

So imagine my horror when Charter rang me to say my GP had not approved of my order and my supplies were going to be cut! To cut a long story short, after threatening to tell my MP about this and/or consult a solicitor, my order for supplies went ahead, but without the in-bag deodorant! I then asked for this again, separately, but instead of 6 tiny bottles, they just gave me one. So I have to save this for when I am visiting friends, in order not to stink their houses out if I use their loo!! In the meantime I have had to invest very heavily in special sprays from the supermarket to stop my own home smelling like a sewage farm, after having to empty my bags 10 times every day. My output has recently increased because of some tumor-shrinking tablets I have to take every day as I have just been diagnosed with breast cancer. The tablets cause diarrhea so now I am using many more bags than usual. I am dreading what will happen when I next order new supplies.

Thanks, E Rigby! Useful information. I have not had to go through the GP until the last incident because I have been told the rules have changed and Charter have to get approval from the GP first before sending me the supplies. Was told this is due to austerity measures!!!

Hi Cecile, I am originally from the UK now live in Brisbane. We have a similar problem in that we are allowed 90 bags (2-piece sealed non-draining Hollister) or 20 drainage bags per month.

As I am having and have been having chemo for some time, I have to change much more frequently as the toxins from the chemo are so terribly harsh on the stoma causing ulcers, cuts, and tears, sores, etc. Plus, they are toxic to anyone who comes in contact with them.

After much ado about nothing, the extremely clever clerical, non-medically trained person in the health commission who has the authority to allow more finally understood when I tracked him down. I asked to see him personally to explain, and there and then at his desk in front of everyone (who were so horrified they didn't move), I lifted my top, pulled my skirt down enough, and took off the bag. I wiped my stoma and told him to have a good eyeful so he could make an informed decision. (I was good enough to put a plastic-backed padded sheet on his desk to catch any mess) I took a selfie and asked for his email so he could have a permanent record of my visit.

I then cleaned up, put on a new bag, removed all waste, gave him some hand sanitizer as well as myself, sent him the selfie, et voila! I can now get whatever I need to stay clean, fresh, and some barrier products, odor reducer (I guess he couldn't handle the smell when it was open lol), and the rest is history.

Bottom line, he was medically trained, ignored doctors' requests, and had never even seen one, so I changed that.

A bit radical but it had the desired effect. I am a retired RN, and I am sick of non-medical personnel taking control more and more from healthcare professionals. I may be past my sell-by date, but I am not about to be pushed around by bureaucrats.

By the way, he never spoke one word the whole time.

Before I go, a tip to anyone who has very runny ileostomy output. Put 1-2 teaspoons of Metamucil powder in the bottom of your bag (not drainable ones), and it will turn from a liquid to a paste consistency. It solves the odor issue if you use a flavored version. I use the berry one and smell of berries! It's much better than taking meds to try to firm it up, and it's cheap. Be careful to make sure you put it all the way to the bottom as you don't want the powder on your stoma.

Good luck everyone! Lorraine

Hi

I just wanted to say I also use a two-piece, same as you, but I change every day. It would be very risky not to, as more often than not, I have the beginning of a leak. Also, I am paranoid about sending out bad odor.

I change my colostomy bag when needed and every other day. My ileal conduit wee bag. I change every other day. I am in the UK. Sod what your GP says, they get the money back. Your GP would hate me, I order those things like drops that stop your colostomy from smelling. I use a one-piece Hollister wee bag, very rarely do they spring a leak. It's what suits you best that matters.

Keithy58

Thanks so much for your support!

Cecille

Hi Cecile, I am also in the UK, up north in Scotland. I have a urostomy stoma so slightly different from yourself, I get 30 one-piece bags per month from my Dr. Never had a problem whatsoever getting bags, or any stoma-related supplies, although we are slightly different up here government-wise. If your Dr is insistent about the amount you use, go to another, also as another member said speak to your local stoma nurse, they can sort it out for you.................mine did.

Hope you get it sorted.

Hi Cecile, I too am from the UK (North East England) and have never encountered this problem. I change my bag every day, sometimes more than once depending on the output of my ileostomy. I use Salts Convex Stoma bags and have little if any problems with them. I have tried lots of different products for different reasons and have never had an issue with my GP practice authorizing the prescription. Take no nonsense from them because they would soon understand if they were in our shoes and I am sure they wouldn't question how many bags you use then!!! Good luck xx