So after struggling with a dead bladder for multiple years and a rectum that doesn't work, I'm having the big surgery next month! I'm going to have my bottom removed and a colostomy made, as well as having my bladder removed and a urostomy formed. Needless to say, I am very nervous but also ready to get my life back. Was wondering if anyone else on here is a double bagger. Any advice would be appreciated!
phonejackson33
Aug 07, 2025 1:49 am
IGGIE
Aug 07, 2025 2:50 am
G-Day phonejackson33,
As Warrior said, Susan is your go-to lady. She will be answering soon. Good luck and stay with us after your operation. Sending you good vibes.
Regards, IGGIE
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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
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
SusanT
Aug 07, 2025 1:13 pm
What an introduction from the gents!
As they said, I'm a proud and happy double bagger. In fact, today is exactly 1 year from my surgery.
Always happy to answer specific questions, but some basic advice:
Read up in advance. It won't all stick, but whatever you remember, you won't have to learn the hard way.
Check out the UOAA website.
It will be overwhelming at first. This is probably true for everyone with even 1 stoma. But I think it is worse for those with 2 new stomas at once. There will be a learning curve in the beginning, and you will naturally make mistakes and have accidents. With 2 stomas, this happens twice as often. It's like a crash course. On the plus side, you will end up learning from mistakes with 1 stoma and not make that same mistake with the other. So you'll get through the overwhelming period twice as fast.
Make sure you have services from an ostomy nurse for after you go home, whether this is through home health care, a clinic, or a combination. You will have problems, questions, and need advice that is best delivered by a professional who can see your exact situation.
See an ostomy nurse to mark your stoma placement in advance of surgery. You want flat areas of the abdomen, away from scars, the belly button, skin folds, and bend locations.
Get some incontinence pads to place on furniture and your bed. They make disposable ones, but I bought fabric ones that can be laundered and reused off Amazon. The fabric is more comfortable and more environmentally friendly. Accidents will happen, and these provide a lot of peace of mind. I have only needed these a couple of times early on, but what a relief not to be damaging my bed or upholstered furniture when things go wrong.
Plan to get a hernia support belt. You'll likely need to get this custom made, which takes a really long time (about 2 months). Ask your ostomy nurse for suggestions, but I've only found 2 places that will do 2-bag belts.
Nu-Hope, you can get instructions from their website; you send the tracing to them, and they create a template. They will call with the template number. Then you order through your medical supply company.
This is a direct order site with measuring instructions online.
Stealth Belt used to do these, but they've undergone some management changes, and I don't think they do them anymore. Ostomy Bagholder is similar in style.
Last but not least, keep coming back here. You'll learn a ton from other ostomates. 1 baggers only have one stoma to worry about, but the problems are the same. There are few things that are specific to a particular type of ostomy and even fewer specific to 2 baggers. We can all learn from each other.
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IGGIE
Aug 07, 2025 3:03 pm
Great help for phonejackson33. Susan, this is your second Gold Medal.
IGGIE
How to Stay Hydrated with an Ostomy with Collin | Hollister
TerryLT
Aug 07, 2025 9:20 pm
Welcome to our club. As expected, our resident double-bagger has weighed in with some excellent advice. You have found a good resource and a great place for support and friendship.
Terry
francis09
Aug 10, 2025 4:37 am
Hi!
I'm not a double bagger, but I had my bladder and rectum removed, among other things, after a total pelvic exenteration in April 2024. I have what is called a wet colostomy: one stoma/one bag for both urine and feces. I have yet to meet someone else with the same system, other than another patient of my surgeon, which tells me it's rare. Anyway, I appreciate this system as I just have to deal with one stoma and one bag.
Good luck on your surgery and recovery!
Best,
Francis
SusanT
Aug 10, 2025 12:49 pm
I had the same surgery (TPE), but a wet colostomy was not offered to me. It might just be in my head, but wouldn't you have to worry about kidney infections? Or did they do something to prevent that?
francis09
Aug 17, 2025 2:22 am
Hi,
Yes, that is one of the downsides of this setup. However, I already deal with kidney infections from a nephrostomy tube I have on my right kidney. I think I'm happy with the decision I made. I'm not sure what I would do if I had to deal with two stomas and two bags, but then again, I wouldn't know since I only have one.
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