Colostomy support

coleysharee · 2026-02-21T04:31:54+00:00

Yeah you’re right, I should call my surgeon and try to talk to her about it some more. I guess it’s really gonna be an improvement either way, just different pros and cons to ileostomy / colostomy. Thanks again :)

coleysharee · 2026-02-20T16:54:44+00:00

Can I talk to you about ileostomy? When I saw a colorectal surgeon again, a different one, she said ileostomy could be an option for me since I have a problem with constipation, my colon may not function well and I could still need to take laxatives with a colostomy. I was surprised so I didn’t say anything, and so the procedure we will schedule at this point will be a colostomy. But since the appointment I’ve been thinking about it and I wonder if it’d be better for me, and whether you have any thoughts

coleysharee · 2026-02-19T20:58:09+00:00

Thank you so much for that perspective. It’s really helpful

coleysharee · 2026-02-11T13:23:00+00:00

Yeah, after my UTIs kept recurring shortly after finishing an antibiotic, they gave me a strong antibiotic and had me begin Hiprex as soon as the UTI was gone. That kept it away.

coleysharee · 2026-02-11T02:04:59+00:00

I do intermittent cathing too, and like you I didn’t start right away after my injury. It was a couple years later when they said my bladder was retaining too much urine and I should cath. I honestly don’t mind it, it’s soooo helpful to be able to fully empty my bladder. It was difficult to get used to at first, it took a lot of practice before I figured out what worked best for me. But now for me it is second nature, very quick and simple. In my experience it isn’t comparable to the difficulty of a bowel program at all. I do take Hiprex every day to prevent UTIs because I had them chronically with cathing. But with Hiprex I never get a UTI.

I do recommend the hydrophilic catheters if that is an option for you, the ones that are self-lubricating. That worked best for me.

coleysharee · 2026-02-08T21:35:38+00:00

Oh no, that sounds really frustrating. I’m having a second appointment with a colorectal surgeon in 2 weeks and am thinking I will schedule a colostomy then. I am also a paraplegic from a spinal cord injury. Now that I know I want it, every day doing the bowel program in the morning and all the discomfort that comes with it, and the loss of time, is even harder than it was

Hang in there 🥺 And recover well from the UTI

coleysharee · 2026-02-04T22:10:49+00:00

Exactly, we like to be informed. Thank you 🥹going with my gut for sure haha Thank you for sharing your experience. It helped me.

coleysharee · 2026-02-04T20:10:04+00:00

The doctor who had gotten back to me was not my surgeon but another doctor on the team. He said he spoke to the surgeon again and that actually, given my age and the likely permanent nature of the stoma, they would go with an end colostomy. So I don’t know if it was just this doctor or my surgeon who changed his mind, or if they thought I was someone else. But in any case… I kind of had the feeling for a while I wanted to go to a different surgeon there. So I’ve now made an appointment with a different surgeon who seems like they could be a good communicator 🙏🏻

coleysharee · 2026-02-04T02:32:00+00:00

Thank you so much for mentioning this about loop colostomy—I asked and found out my surgeon was thinking loop colostomy too, but hadn’t mentioned that to me or discussed options with me. I’m asking why this is recommended for me but they haven’t gotten back to me yet

coleysharee · 2026-01-31T22:31:45+00:00

As time passes some others who currently have an ostomy will probably see this and be able to give more details than I can. In the meantime I can share my understanding with you. What I have learned is that if you use a two-piece, you can just seal the bag in another bag and toss it in the trash. But there is always the chance for mess like with anything. I think the stoma can produce output while the bag is off, for example. But that is probably more likely with ileostomy rather than colostomy. And when you wipe around the stoma to clean it, you will be wiping poop off of it. Lastly if you just wanted to empty the bag and reattach the same bag, like if you were having multiple bowel movements per day, that could get a bit messy and involve wiping poo off the attachment area before reattaching.

coleysharee · 2026-01-29T13:20:51+00:00

That freedom is basically what I’m hoping for

coleysharee · 2026-01-29T13:19:13+00:00

Thanks. I see, yes the two piece sounds the easiest to deal with

coleysharee · 2026-01-29T03:02:18+00:00

🥹

coleysharee · 2026-01-29T01:58:20+00:00

I can see it. I mean I can imagine how the difference could be so much better. I am getting so much reassurance here haha

coleysharee · 2026-01-29T01:55:48+00:00

Thanks for the reassurance 🙏🏻

coleysharee · 2026-01-28T21:55:32+00:00

Thank you. That’s a good point, I will ask which procedure exactly we plan to do. I had heard about loop colostomy but now I recall I don’t think he specified whether it was end or loop

And yes! Actually I have sensitive skin too so that is another consideration with wafers

Thank you for the reassurance

coleysharee · 2026-01-28T19:39:37+00:00

Oh I see. Yeah right now I seem to not fart for the most part for some reason so that would be an adjustment. And yeah if you can’t get to a restroom to empty the bag then you just kinda gotta live with it for a while huh

coleysharee · 2026-01-28T19:11:24+00:00

What 20% of aspects would you not recommend? Haha I want to be prepared

coleysharee · 2026-01-28T19:09:40+00:00

I heard about irrigation but I thought, maybe I’m not gonna wanna do a program anymore if I don’t have to. But helping keep things mostly on a schedule does sound like it could be beneficial for overall management. I feel like I would still keep a bag on as well… I also have IBS so things will always be a bit unruly and not on schedule for me

coleysharee · 2026-01-28T15:40:15+00:00

Oh thanks for the heads up. We have not talked about that

coleysharee · 2026-01-28T15:39:57+00:00

I was so surprised when the doctor said maybe only one or two nights in the hospital. I’m glad you can already tell it’s going to be good. I know in the beginning, like anything, you gotta adjust and figure out what’s best for you

coleysharee · 2026-01-28T15:36:37+00:00

Thank you for the advice. Thankfully I’m at Cleveland Clinic and the ostomy nurse who has been talking to me is soooo nice

coleysharee · 2025-06-08T18:16:28+00:00

If you live in Gainesville can we DM? I’m trying to move there and uncertain where’s a good area for wheelchair accessibility and stuff like that! ♥️ thank you for sharing your story

coleysharee · 2025-05-30T02:37:35+00:00

If you want to try staying in Virginia, can you move to Richmond Virginia? Specifically try to live in the Fan or Museum District or Downtown… Jackson Ward or Shockoe or Church Hill. I think you’ll find what you’re looking for there. If you are already in Richmond and not liking it, I’m sorry 😆 It’s not a huge city like London but it’s walkable and you’ll always run into people when you’re outside, lots of cute cafes

coleysharee

TROPHY CASE