Ostomy bag usage in the UK: Frequency and cost concerns

I'm UK &urostomy. I use a one-piece Welland product. I put on a fresh bag every 24 hours. I order 40 bags at a time. When I am down to 10 left, I order another 40 (My doctors are sometimes a bit lax in forwarding my script to Charter Healthcare (My supplier). Every 2nd order, I also request another 10 night bags. Nothing else I have is prescription-related. Charter sends me free disposable bin bags, wet wipes, and dry wipes.

I would not tolerate anyone messing about with my supply chain or products ordered.

Doctors should mind their own business unless they want a poke in the eye with a very sharp stick!!

Thanks for sharing your story, Lorraine. And good for you! Another reason I fear Obamacare here in the U.S.!!!

I have had my ileostomy bag since 2000, and I found I can go about a week before the hair under the wafer gets too long to keep the seal. I did find these Diamond cell things I put in my bag when I empty (which I still haven't figured out the correct way yet), but they eliminate odors. My insurance will not pay for them, but they are cheaper than the bags. Now I do not grow a ton of body hair, but I have been told some people can go as long as two weeks between changes. I change mine weekly, but I still get very, as my wife would say, fn crazy if I think my attachment is stinking. She says she cannot smell it, and it may be because I have a big Serbian nose, but I just hate the smell of my attachment. I am disabled, so I do not work, but the Diamond cell bags give me a calmer peace of mind since they have charcoal inside them which kills even fish smells. It basically depends on the person, but I have also had a yeast infection under the wafer which is a real pain to cure. They think the drugs I was on caused it, and it wasn't from how long I go before changes.

I thank God for President Obama and the Affordable Care Act. I was one of those poor unfortunates who lost their job and health coverage while Bush was president, and having already had cancer and a colostomy, I was uninsurable due to this being a pre-existing condition. I was paying full price out of pocket for ostomy supplies with no discounted insurance prices. Now that I am getting help with the cost, I change my bag every day. I use Coloplast one-piece closed pouch, and if I eat properly and drink enough water, it is full every night at bedtime. The bags also start to smell if I wear them for more than a day. I assume the people who are talking about wearing a bag for 3 or 4 days must be wearing the drainable bags. I have tried drainable and two-piece systems, but I was always worried about smells and just not feeling like the bag or the ring was very clean. The one-piece works best for me, and I don't feel as self-conscious about my hygiene.

I haven't replied here because I am not from the UK. However, your remark about the Affordable Care Act caught my eye. I'm happy it is doing something for you. Wondering how you got on it? I have two relatives, both cannot work because of mental issues and one has a severe back problem with discs (not sure exactly), she also is starting to have short-term memory issues. Can't afford insurance or go to doctors to get help for any of this. When trying to apply for Medicaid here in Florida (which is a joke all in itself) they both received a notice saying they were declined Medicaid but were eligible for the Federal insurance. When a phone call was made to the Affordable Care Act number shown on the notice, one was told they, indeed, did qualify but they needed to send in a premium of $289 for it to start a month after receiving payment. Promptly asking how she was to do this without a job, home and being on food stamps or she'd be starving also...the representative had no answer for her except to tell her she needed to send in the premium if she wanted insurance. They both have started Social Security Disability applications, but that is a very long process with no positive outcome guaranteed.

When I first heard of ACA, it sounded wonderful. It made the case that ALL Americans that could not afford insurance would have it. That was false. It seems only the Americans that can afford to pay the premiums can have it. Part of my previous job duties was to secure health insurance for the employees of our company. It wasn't too long ago. I have also been checking online for comparison. If you really look at all options available, you can find a better insurance for less than the $289 quoted by the government. I'm curious how you got approved macsac1, or are you one of the fortunate people that can afford the premium?

You can thank Jeb Bush for choosing not to participate in "Obamacare." Fortunately, I live in a state that expanded Medicaid. Most of the states with Republican governors chose to play politics with the lives and health of their citizens.

I kinda figured you lived in one of the states that actually care for their constituents. I should have looked at your profile before I asked. But thanks for answering. Is Jeb Bush still our Governor??? Minute.....nope, didn't think so. It's Rick Scott. Which makes no difference. Florida sucks. It's only for people that have money. Yes, I knew Florida declined the billions of dollars the government offered them to expand their Medicaid program.

Thanks, again, for replying.

Hi, I have such a problem keeping my flange to adhere to my skin that it's awful! Oh, to sleep through the night without fear of it falling off in the night. I do live in the US but the amount of bags and such I use is phenomenal! God bless, Ruthie

Hi Ruthie. You should not have to live with that fear. Please go to the home page and check out "Tips from Ostomates." Also, check out many of the posts here on effectively applying flanges. You owe it to yourself to get significantly better results. Don't stop your search until you resolve your situation.

PB

Hi

I change my flange every 5 days; sometimes it can push to 7 days. My bag, I change every day after a shower. However, there are some days that I do not have to change the bag. On average, I might save 5 bags a month. I'm in sunny SA and the medical aid has not had any gripes about 30 bags per month (yet). But I guess it would depend on each individual's requirements. I do not want to be "smelly", so if needs be, I would change more than once a day. Wishing you happiness. God bless.

Hi Cecile

Before I started irrigating, I would use 6 or 7 bags a day, as I could not stand to have any output in them at all. When reprimanded by the doctor, I asked him how many he used. When he said none, I said I was using his share. Report it to your stoma nurse, she will have a word with them. It's usually the nurse at your doctor's who deals with these prescriptions, so your doctor may not even know. So explain the situation to her. Failing all that, change your doctors, if possible, but tell them why you are leaving. Keep in regular contact with your suppliers and your stoma nurse. Together they can be quite aggressive with your doctors. Good luck.

Hi Cecile - I have a urostomy and get through at least 2 bags every day. I have quite a big stoma - approx 45mm diameter - so I am very limited with the types of pouch that can accommodate him. I have found that a one-piece Coloplast 11804 suits me best. This has a clear front face so that I can see when the pee is starting to track from the stoma cut-out to the outer edges of the bag flange. If I see the pee nearing the edge of the flange during the day, I can then either fit a new bag or attempt a patch-up job using some security strips around the edge of the flange.

I normally put 1 bag on in the morning after showering and 1 on before I go to bed. Invariably by the time I change the bags, the pee has always tracked to within 5mm of the edge of the flange.

I have tried various pastes and flange rings etc. but these fixes have never worked for me.

I tend to get an average of 1 - 2 unexpected leaks in any 1-week period - luckily most occur during the day although I do get some nighttime accidents from time to time. I always sleep on an absorbent pad as insurance against wet beds and always use a night bag. I have convinced myself that sometimes I get a rogue batch of bags sent which are past their sell-by date and have poor adhesive flanges, as my leaks sometimes seem to occur in clusters - i.e. I can sometimes get 2 or 3 leaks in a day.

My supplier is Charter Healthcare, and over the past 12 months they have changed their policy regarding ordering new supplies. I now need to give at least 2 weeks' notice before I think that I will need new supplies. They used to apply for prescriptions retrospectively, but now they say that because of new NHS rules they must get a prescription from my doctor before they can send out supplies. My surgery will only let me have a prescription for 1 month's worth of supplies so it is impossible to build up a buffer stock. I often have to ring Charter to beg for some emergency pouches when I am down to having only 2 or 3 bags left. Charter always say that my surgery is at fault and my surgery always blame Charter for not asking for the prescription in good time.

I have never been directly asked to account for the amount of supplies that I order. However, my wife has received calls from both our surgery and the local NHS trust asking if she feels that I really need the amount of supplies that I am ordering. Sneaky or what?

I am sure that with the recent NHS reorganizations and government cutbacks, keeping our supplies topped up is not going to get any easier any time soon.

Best wishes - Mike.

I'm in the UK and change mine every day, sometimes twice. I find the bag can get a bit smelly as I don't think the filters work well for very long and my skin gets itchy under the wafer and benefits from a good clean and a bit of barrier cream every day.

Ask your GP how often they change their underpants or knickers. :)

Hi Cecile, I am Scots, but have lived in the U.S. many years. When I first got my colostomy and had to think about bags etc, it was frustrating to discover that my insurance co. only permitted one box (20) pouches a month. My husband was purchasing add. pouches until I brought it up to my surgeon on a routine visit. I got from him a letter of necessity, it stated I needed an additional box every month. Well, it took months of every month having to have the same conversation with my supplier to the point where I asked them if they thought I should just tie a plastic bag around my middle. All is well now thankfully, but it is ridiculous to try and pigeonhole patients. Every day is different based on food intake routine. Some days I use one, others could be two to four. I use Coloplast Sensura bases and pouches and yes, if there is only light soiling I can wash the pouch with antiseptic soap and hang on small hooks in the shower. I change my base approx. twice a week. The paste I use for sealing is excellent. Good luck with your GP, tell him he should walk in your shoes for one day then! Decide and discover how it feels to beg for the supplies we so desperately need. A physician's oath is "first do no harm." That means mentally as well as physically. Go get me.

Hi, I'm in the UK and was unaware it has anything to do with my GP. I have a prescription exemption card and just phone up my supplier and the gear arrives. I have always assumed it just came from some 'central pot' of money just like kids and older people get theirs free.

Cheers, Iain

Yeah, the company that supplies you puts a prescription in at your doctor's on your behalf and has your medical exemption card details. It's so easy for us.

Lorraine,

You go girl!!!

Gileo

Hi Cecile,

Sorry for the late reply.

Firstly, find a new doctor if you can.

Secondly, I am in the US and have had my ileo for 3 1/2 years. I use the Hollister drainable 2-piece system. I used to get 4-5 days between changes when I was inactive. Now that I am back to practicing yoga 2-3 times per week, I generally get 2-3 days between changes. I presume it is the fact that I sweat more now. I also rinse my bag with water when I am at home at night or when I awake in the morning. I feel cleaner when it is rinsed out. I use the plastic bottles from the deodorant that I get. Keep 3-4 bottles by the toilet. You can squirt water into the drainable end and fill it up and release.

Thirdly, does the type of stoma...ileostomy, colostomy, urostomy, have different durations between changes. I would like to hear everyone's stoma type as they answer Cecile's question.

I find that crazy so many of you can go so long... :S

I have a colostomy and I've tried multiple products with my stoma nurse, finally ending up with Hollister New Image, but I was never able to go more than 2-3 days on a flange and have always changed bags daily at least (sometimes 2-3 times a day before, which sucked)... I have always used the 2-piece system with closed pouches mind you, but I guess we are all different.

I still use them now, but they easily last a day after irrigating... And I mostly change them daily just because I prefer them dry inside and not having mucus clogging the filter ever. I do so because I prefer them as flat as possible against my stomach, because I have a bit of a tummy lol so they'd show.. :P

We're exempt from prescription charges for having a permanent stoma in the UK, but it's far from free. We pay high taxes to cover it. Make sure your prescription exemption certificate is in date. If you tick exempt from paying on a prescription and it's run out, you can be heavily fined. I can't remember if it was 2008/9 when it started that home delivery companies had to have a prescription before they could send ostomy supplies. Some companies have been heavily fined because they were sending out products before getting a prescription. If I was having problems with my GP, I would contact my stoma nurse and see if she could knock some sense into them. Some GPs now won't write a prescription out for ostomy supplies; you have to go through your stoma nurse. I use Convatec Esteem drainable. I change it every 3 days or so. So far, I've been lucky and not had any problems getting a prescription. I use my local pharmacy; I just tell them what I want, and they sort it out.

I change mine around the second day as I workout daily. I manage to keep the same bag for a 2-day stretch after a workout. I use a hair dryer to dry it after a bath , it's how I manage a 2-day stretch. Otherwise, I can make it last 4 to 5 days between changes if I abstain from exercising.

I am reading this post and thank you! I am in the US, and have been considering a move, with the whole 2016 elections, as I have family there. I totally agree that too many non-medical people are making medical decisions. This happens here as well. The OP's doctor sounds like mine. Seems to be quite willing to save money for the state, at the expense of the patient. Not healing. I could see myself doing what you did, although it's unfortunate that it sometimes comes to having to resort to this. Way to go!

Thank you all, also for a glimpse into dealing with your medical system. I will be having my surgery soon, and also appreciate the experience and knowledge in this forum.

I did get a laugh out of the story, only because I identify with the frustration and the spunk. Thank you.

I also wanted to respond to the number of monthly appliances allowed per insurance. When I had my surgery 4 years ago, my health insurance through my employer allowed 4 boxes of wafers and 2 boxes of drainable pouches. Periodically, I would receive a private pay bill but would contact the medical supply company and they would make a few phone calls and everything would resolve...insurance paid. Well, in January I ordered my monthly supplies and the medical supply company said that I was not approved for the number of supplies that I was requesting. I was only approved for 1/2....2 boxes of wafers and 1 box of pouches. Today, I am in the process of appealing the decision. I wrote a nicely composed letter to the insurance company explaining my situation. I also asked my doctor to support my letter with a medical note of his own. We will see what happens.... I do not understand why there is a cap on medical supplies as long as they are needed and not sold somewhere else for profit. You understand...sort of like scalping tickets at a concert or professional sports game. I use my supplies and like to have some extra just in case. Like everyone, my digestive track is different every day and some days (months) I need more product. Thank you everyone. Take care and good luck. LH

Nice to meet you, I'm Debbie from Canada

I live in the states but I change mine every two to three days. Medicare only pays for one every three days but I hate odor so usually I can convince my mom to buy me one extra box of bags for $60; for 5 bags.

I am in the US and change my bag every day, Medicare allows this. To keep the smell down, I tie a plastic vegetable bag from the produce dept. around my bag. It keeps the smell to a minimum. Upon daily changing the bag, I have a plastic bag to dispose of the old one.

You can get drops for the odor from your supplier.

Hey guys, I don't have the same problem. I change my apparatus every 5 or 6 days. I get my supplies from Byram Medical. Leaks are very little and there has never been an odor. With the thing you put on first, they give you a healing powder around the stomach. Then they give you a glue pad so the apparatus doesn't come off. Just saying.

Every 4-5 days.

Hi, just wondering what you do for the times you get so depressed. Also, what belts are best for us to wear to prevent a hernia?