Ostomy bag usage in the UK - Frequency and cost concerns

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.

How to Stay Hydrated with an Ostomy with Collin | Hollister

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?

Victoria,

During my 42 years with an ileostomy, since I was 18, I've not been depressed because I was an ostomate. I know that without my surgery I would be dead. The thought of being dead was more depressing than living. There is so much you could and can do. How about doing volunteer work? With poor, your local school or hospital, ..... Don't stay home and feel sorry, use and take advantage of your health to help others.

Mike Q

Don't worry, I take my own advice.

Yes, you're right but when you're not feeling well, it can be hard. And I didn't ask about how many times you change your bag. Well, I'm just saying how I never feel good and do you lift heavy? And do you rest a lot? I do. I feel like I'm gaining too much weight too. It's been a lot and so scary. A lot. Also, I don't drive. Thanks for reading. Hope you're well. I'm always dizzy, feeling new life. Victoria.

Always dizzy, feeling new life. Victoria.