Struggling with Ileostomy Bag Availability After Discontinuation

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Mossymossy1982
Dec 27, 2024 8:57 pm

Dear all,

Is anyone else struggling with ileostomy bag availability?

For many years, I have used Hollister 41cm drainable bags. I have now been advised that these are no longer made by the manufacturers. These have been replaced with much smaller bags, which means nighttime emptying has become much more frequent.

Thanks for reading, and any info would be much appreciated.

 

Bill
Dec 28, 2024 7:52 am

Hello Mossy.
It is often very disappointing when manufacturers withdraw products that we have been successfully using for some time. However, all is not lost.  There are plenty of other suppliers out there who will have similar products and are only too willing to send out free samples for us to try. 
Personally, I use Charter Healthcare as a supplier, which is a subsidiary of Coloplast based in Peterborough. Their staff  have been really helpful when discussing problems and needs.
That aside, instead of using a 'normal' bag at nights, I use a folded (& clipped)  irrigation sleeve, which has an enormous capacity and is easily flushed out and is a great advantage at nights, when I tend to be half asleep. 
It's all about experimenting to see what works best for each of us, so don't be shy about asking for samples.
Best wishes

Bill 

Posted by: Karen & Stella
Fay,

I am one of those few people who still have a lot of output at night. However, I suffer from short gut syndrome after seven bowel surgeries that led to the loss of much of my small intestine as well as my large intestine from the initial bowel cancer surgery. It does get better over time as your system adjusts, but an ileostomy can be a challenging adjustment. It's important to connect with a good Enterostomal Nurse - ET nurses who can help you problem-solve over time. It's been five years since my initial surgery, and I had a great visit with a new ET nurse in December. He really helped me with the problem of high output at night. I had been getting up every 90-120 minutes to empty my high output bag because of filling. If I slept for three hours without emptying, I would have problems. My ET nurse helped my husband and me make a nighttime collection system using a Rubbermaid juice container with a handle and my old CPAP hose. This is connected to one of my two-piece high output bags and allows for continual drainage. It isn't pretty, but it has been a real lifesaver. I guess the real message I want to share is to stick with it, find a nurse who you can work with, and together you will find solutions to whatever challenges you face. This website is also an important support for me and others. There is nothing you will go through that others haven't already faced and figured out. There is so much wisdom here. Read the materials they've put together for newbies. There are a lot of great suggestions to use. I hope things get better quickly for you.
Karen
vanestag
Dec 28, 2024 11:33 pm

What a great idea! Just curious, are you on Medicare, and if so how many irrigation bags are you allowed? I’m on Medicare, ordered an irrigation kit, thought I’d try it out. They only allowed me 2 irrigation bags for 6 months, according to Edgepark, my supplier at the time.

Bill
Dec 29, 2024 9:43 am

Hello Vanestag.
The answer to your question is that in the UK we tend to be on the NHS (National Health Service) which, as far as I am aware, will supply (more or less) as many sleeves and bags as each individual needs (without charge). 
That said, I use my own (DIY) baseplates, which means that I can get several months of wear out of one sleeve before having to change to another. I used to get them to last over six months when I was soaking them in bleach to get the stains out. But, more recently, I have been discarding them when they get too stained and they tend to last about 3 months. As there are 12 in a BOX I have only ever had one box to date and I estimate that the remainder of sleeves will probably last me until 2026.
As for bags, which are 2 piece.  The same principle applies in that I attach them to my own baseplates and they last about a month, Largely because I irrigate and, as yet, have have no output land in the bags. The problem with the bags is that they are flimsy and split where they are moved on and off the baseplate (You can see a picture of this splitting on my profile). 
I often feel sorry for residents of the USA who do not seem to have a system of medical care that is paid for by taxation and is free at the point of need.
Best wishes
Bill