Anyone with two bags (urostomy & colostomy) - how bad is it?

I didn’t have a choice about the urostomy as it was always going to be part of my TPE surgery-my cancer had spread over my bladder and all of my organs were stuck together due to previous radiotherapy. My bladder control wasn’t very good by this stage, so I wasn’t so sad to see it go. Plus I was in a huge amount of pain from my cancer and thought of it as trading daily relentless pain for a pain which would recede as I recovered. 

I couldn’t really imagine in advance what it would be like to have 2 bags permanently on my tummy, so I chose not to think about it and see it as a means to an end, so I do understand that our situations are different. By no means was a cure for me guaranteed, but I wanted my pain to stop and be able to function again. My colostomy was an elective one as I mentioned, and my thinking was just about going all in with surgery at the one time. 

I’d love not to have stomas at all, but their impact on my life now is minimal. No-one knows I wear 2 bags unless I tell them, which I don’t, they are not seen under clothes, and I can still go swimming etc. I can forget they’re there, and my stomas are both very neat and better visually than what I expected. I would find it very difficult to live with incontinence personally, not feeling clean, having to wear pads or nappy pants, and I think that would have a profound effect on my mental health. But we are all different, and others might feel able to cope with that but not feel able to cope with a urostomy. 

I woke up earlier today in a dry bed, and checked my night bag-almost 2 litres of liquid. I would have been up several times in the night with a bladder but instead I slept soundly! 

Sarah xx

I've seen the advice about carrying a complete appliance change as well as a change of clothes. It floats around the internet for all kinds of ostomies not just urostomies. I think it's most critical for ileostomies since those leaks are vile.

I carry appliance changes but not a change of clothes. I have never had a leak or needed to change appliances away from home. 

Most of my leaks at home have been from the colonostomy. Usually those are caused by pancaking. The few leaks I've had from my urostomy have all been my own fault. I forgot to put on my night bag one time. I fell asleep in my comfy chair a couple times. Once I was wearing a safety pin that came open and punctured a small hole in the bag. Overall, my colostomy is more trouble. 

As you have said, your situation is very different. I had no choice. I would have died last fall without that surgery. I was so sick and in so much pain, I welcomed the surgery. It wasn't clear if the surgery would cure me but it was my only option. Knowing the surgery won't cure you changes your perspective. 

In my heart, I believe your quality of life will be better with the bag than without it. That fistula was making me miserable. But that's me, not you. Your assessment may be very different from mine. I support whatever choice you make. 

Sorry to hear you had such a torrid time of it. Sounds like you had a awful time before your surgery. 

Thanks that's good to know on the leak & change....very heartening to hear that you've never had a leak away from home. And that most of the home leaks are colostomy.

That's after all what one is scared of. I've had 'almost leaks' with incontinence pants - was in an art exhibition once and had to leg it out. And plenty of leaks at home - I find it difficult to judge exactly when the pants need changing, unless you go to the loo and check. Incontinence support has been non-existent but thankfully I finally found a non-leak night time solution. But it is a pain and a constant 'issue'. And precludes me from some stuff - like I don't do group walks anymore, bit tricky to go behind a bush and take one's boots and trousers off so you can change pants, especially if your balance is not brilliant and its muddy. lol.  

I think I need to make a list of what impact this has on my life currently (one sort of accepts and gets on with stuff) and the medical risks - write it down, and then on the other side, my now 'updated' understanding of urostomy. 

Thank you for the support, you and Sarah21 are heroes. :-)

Wow you've had a difficult journey, thanks for sharing so much. 

Your comment about that you'd love not to have stomas at all but their impact on your life now is minimal - is huge. I suppose I'm so focused on the fact that I don't like (who does) and want (who does) stomas. Really powerful comment on the impact on your life....that's the crux of it after all. Your replies are super helpful

Can I ask one last question (promise)....you mention the night bag. Is it possible to attach a leg bag - like if you travelling and need more 'capacity'? thanks

Yes, it’s absolutely possible to use a leg bag attached to a urostomy bag if you’d like to. 

I’ll tell you the reasons why I’ve never done that, or felt the need to. Firstly, the type of clothes I wear mean that it would be seen, and very obvious. I’m disabled, and have difficulty with putting on clothes on my bottom half as I cannot bend down, so I need clothes which are easy to put on-I wear leggings every day where I can hide my bags by wearing long tops, but a bag attached to my leg would be very obvious, so for me I’d be very conscious of it and everyone would know I was wearing it. 

Second, the actual bag gives me enough capacity itself not to leak when it’s getting full, Although I have no sensation of needing to go to the bathroom, the weight of the bag reminds me to empty it! Mine holds about half a litre at its capacity. 

If I were going on a long car journey and unable to stop to empty the bag anywhere, I would either attach my bag to a night bag in the car or empty my bag into a plastic bottle and dispose of it. I always make sure my urostomy bag is completely empty before starting any journey. 

When I travel by plane, I use the loo on the plane to empty the bag just as normal. I do a lot of flights although not long haul nowadays, but I’ve done a 7 hour flight followed a couple of hours later by a 4 hour flight, followed by a boat journey. I emptied my bag on the plane, and  in the airport while waiting for my next flight with no problems or leaks. 

Leg bags might be suitable for some, but they just aren’t for me, but I’ve honestly never felt the need to use one-I prefer to have both of my stoma bags well hidden as it makes me feel better about myself, and that’s important for me personally. I can attract enough attention being in a wheelchair! 

Sarah xx

Ah that's so helpful ! Thanks for explaining all. 

I had a catheter for 2 months & a leg bag was sort of ok for me - I always wear loose trousers. So may be an 'exceptional situation' option. But as you say, its nice to be as unobtrusive as possible - I did wonder if people could see the slight bulge on my one leg. Thanks Sarah, you a real star the way you explain things.

It’s just an explanation of my very personal feelings really, and being disabled does impact on needing to wear things on my bottom half that I can deal with easily on my own. For others who choose a leg bag, I’m sure they can find it works well for them and you might decide you’d be fine with that when you’ve had to deal with a catheter before for an extended period. 

I’ve not come across a situation in my own life over the last 5 years even when travelling when I’ve felt I needed extra capacity, and my urostomy bag on its own in the day time has always been fine. It will always be a personal decision for the individual however. You are trying to find out as much as you can, so keep asking any questions you need to ask!

Sarah xx