Living with a Urostomy and Colostomy: Seeking Support and Tips

As I've said before, I have a urostomy and ileostomy. Recently, I've been told that my ileostomy can't be reversed due to radiation damage, etc. The only option now is a permanent colostomy. Devastating. I don't know how I'm going to deal with this. Really struggling, dark thoughts. Any tips about f'ing living with a urostomy and colostomy?🤬

How have you been living with both so far? My advice is to enjoy life with your ostomies because you'd probably be dead without them. 🤷‍♂️

I still have the ileostomy; colostomy is being scheduled.

I'm living with a colostomy and urostomy. It's going just fine.

I also had radiation damage. My surgeon, seeing the damage, made the choice to forego the temporary ileostomy completely and gave me a permanent colostomy from the start.

Currently, you are living with an ileostomy and urostomy. What makes you think the colostomy will be so much worse than the ileostomy? From what I've read here, it seems like the ileostomy would be a bit more trouble.

It sounds like you may be angry and disappointed that the anticipated reversal isn't happening. I get that. Cancer is the thief that just keeps on taking...

Ask anything. I'm happy to share.

So, you're getting the colostomy in place of the ileostomy? I think I understood that right. If so... I had a colostomy first, then it was replaced by an ileostomy to let the connection heal. They're two entirely different animals, in my opinion anyway. I remember thinking to myself I'd rather have the colostomy than the ileostomy because I felt like it was much easier to manage. As we all know, the difference is the small and large intestines. For me, it was much easier to deal with the "formed" poop. I also thought it seemed like I had a hard time retaining nutrients with the ileostomy.

I say all of that because I hope maybe it's a light at the end of the tunnel; you might be surprised by the difference. Please, no dark thoughts. You haven't come this far just to come this far, and you wouldn't be given something you couldn't handle. That speaks volumes of you, quite frankly. Hugs.

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The degree to which we have already come is astounding. If we've made it this far… we can keep going. You got this! 😉

Time, that's what you need to get used to and accept, and talk on here or to family and friends about how you're feeling. Reversal was never an option for me, but I can still understand anyone being angry, upset, and hurt when they were told they could have a reversal and set their heart on it, and the doctor turns around and says, "No, we can't do that now."

Yes, I know that. So, you have 2 now and will have 2 still, just a different one. So, if you're managing life with 2 now, continuing to deal with 2 shouldn't be so devastating. I presume you thought you were going to get rid of 1 of the ostomies; maybe that's what is so devastating in your mind. 🤷‍♂️ However, look at the positive side and realize you're one of very few who are already used to dealing with 2, and you can continue to move on in life. It would be much more difficult for a person to go from none or 1 to having 2 ostomies.

There are some things we can control and some that we can't. Sometimes acceptance is more powerful than fighting something beyond our control. I was walking past a roulette table once with a load of chips in my hands. Nobody was playing. I put them all on the number 17. It came up. I have never seen more surprised croupiers and staff in a casino. I could have lost them all as well, and I have lost many times, but there is control present. The decision to play or not to play is up to you. Life itself is a series of random events. Some wonderful, some terrible. I ran across a book by Mark Manson: "The Subtle Art of Not Giving A F...." A bestseller. Good ideas on how to cope with adversity. Best wishes.

Hi there! While you're waiting for the surgery, look into irrigation for colostomies and maybe discuss it with your surgeon or ostomy nurse. You may be able to not have to wear a pouch. Good luck!

Is there any reason why you wouldn't just keep the ileostomy and stick with what you already know?

Thank you so much. Hugs to you; hope you're doing well.

Surgery after crisis after ICU after surgery…. I never knew what I'd wake up with or if I'd wake up. The ileostomy has obviously been a tough adjustment, but it's the final option and that brings some peace. It's done, and now I can live, mostly without pain.
There are perks—no more frequent visits into nasty gas station bathrooms on road trips! 😄✋

We can't control outcomes. There's a lot of freedom and peace in acceptance after we've done our best. 😉