How often do people in the UK change their ostomy bags?

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 beause 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 GOVT 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 tha amount I usually order....just in case.....

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 changings 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, put 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 Obama Care!

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 Britian, but am Canadian.  I change my bag when I change my flange which is every 4 days.  I have a pouche (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 (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.  Know they have some new rules there now so don't know if this has changed.

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 uretha are removed they also did a hysterectomy and IC - Illeal 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 representitives 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 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 faecal 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 odours. 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 diarrheoa, 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 so hope you are doing well and I wish you the best.

Hi I had an illeostomy 4 years ago and bag changes vary dependant 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 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 gp's reluctant to prescribe other sundries as readilly.

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 an have not had the same issue as you've encountered. 

In 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 a NHS hospital fairly local that providied 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 GP's 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 didnt 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 pescription but the stoma care company were lovely and sent samples just in case.

hi there , l  live  in uk have  urostomy and  now  adays change my flange every 2 days used to last longer  ,but  these days does not  . new  bag on every 3 or  4 days  aswell . l use  coloplast sensura ,plus  aswell l use  night  drainage , which somepeople don't  like . had  my stoma  all my life  so no know  better , lucky all my docs  have  never  questioned  what l would  like  to order , plus  of  course  we  can have  support garments  for stoma  aswell free . wear one  of them sometimes  ,does keep your  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 hrs, sometimes more often. My stoma nurse told me that 48 to 72 hrs were the maximum they recommend using this type of bag. If your GP thinks that you are using to 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 detatched 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 tumour-shrinking tablets I have to take every day as I have just been diagnosed with breast cancer.  The tablets cause diarrhoea 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 pce 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 are toxic to anyone who comes in contact to 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. 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, wiped my stoma, 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) 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 sanitiser 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, odour 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 health care 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 and it solves the odour issue if you use a flavoured 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 very risky not to as more than often I have the beginning of a leak, also I am paranoid of sending out bad odour.

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 ur gp  says they get the money back . Ur gp would hate me I order those of things. like drops that stop ur colostomy smelling. I use a one piece hollister we bag very rarely do they spring a leak. It's what suit u best that matter     

 Keithy58

Lorraine!!!   What a wonderful reply.  I'm not sure I would have the courage to do what you did, but I REALLY admire you for it.  You have truly inspired me and thanks for the tips!  Good luck with the chemotherapy and I hope you live until you are 100 and in top condition.  You deserve to!  Warm regards, Cecille (not my real name)

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 peice bags per month from my Dr. Never had a problem whatsoever getting bags, or any stoma related supplies, although we are slightly diffrent up here government wise.If your Dr is insistent about ther 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.