Becoming a Double Ostomate: Seeking Advice and Support

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!

Susan, you're up!

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

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.

Www.ostomybagholder.com

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.

Great help for phonejackson33. Susan, this is your second Gold Medal.

IGGIE

Tips on Hernia Prevention with Collin | Hollister

What would we do without you, Susan?

Terry

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

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

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?

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.