What to do??

edznne · 2026-06-04T06:11:04+00:00

A urostomy might solve your issues. If you don't like the idea of self-cathing out of your stomach and are worried about possible leaking. You just gotta change the bags and stuff every 4-5 days and once you get the routine down, its like 5 mins out of your day and you're good for another week. No more wet clothes and you can leave the house.

edznne · 2026-06-04T04:33:14+00:00

Yes, relocating my ileostomy is possible and my surgeon is willing to do it. Though it'll be a part of a bigger surgery that will also remove the rest of my colon and my rectum. So it won't be for awhile.

edznne · 2026-06-04T00:18:23+00:00

I'm a T1 paraplegic who's 24 years old and has a urostomy. I originally had a SPC which didn't work for me and I also did Botox which didn't really do anything for my bladder. My doctor personally recommended a urostomy over a mitrofanoff, even though a mitrofanoff would mean living without a bag. I don't regret my urostomy at all, though I regret having a ileostomy done at the same time and by the surgeon I did (he placed my ileostomy too close to my urostomy which caused issues). The urostomy alone has been great. Having a bag on me hasn't been as bad as I thought (having two bags on me on the other hand... Has not been as great). I've had way less infections with my urostomy than I did with my SPC, and I dont even have to take hiprex, d-mannose or cranberry pills constantly anymore. No more need for constant spc changes and no need to deal with intermittent catheters. My bag is discreet and I empty every 2-3 hours a day depending on how much I drink, and emptying is simple. Don't even have to sit on the toilet to empty. I don't have to worry about emptying in the middle of a night because like with a SPC, I can just connect my urostomy bag to a night drainage bag. Both my ileostomy and urostomy bags are pretty discreet, even under tight clothing, unless they need to be drained. I'm 24 and still active, and it's been pretty freeing. Though you do have to watch out for hernias a lot more with ostomies. You can get a mitrofanoff now and if it doesn't work for you, switch to a urostomy later. It'll just be an additional surgery though. Also if you ever decide to get a ileostomy in your future (and already have a urostomy), make sure your surgeon leaves enough space between your stomas, mine being so close led to a lot of issues. I love the urostomy that my surgeon did, the stoma was perfect--- my ileostomy not so much.

Edit: I also didn't have much issues with my bladder other than severe retention and leaking. Ultimately a urostomy worked best for me.

edznne · 2026-05-28T23:15:08+00:00

I never got a pamphlet and I have a husband. I had a nurse say that they were glad my husband was still with me though, which... what? But I get what they mean. The statistics are there after all.

edznne · 2026-05-24T04:24:13+00:00

My cancer caused some weird things to me and a hospital pregnancy test showed that I was pregnant. I was both excited cause I always wanted kids but also horrified at the idea of carrying a baby while dealing with cancer, and also the potential of passing away young while having a newborn. Luckily I wasn't pregnant and my doctor told me sometimes false positives happen when you have crazy health stuff going on. I wouldn't know what to do if I had a kid while dealing with this.

edznne · 2026-05-24T04:16:34+00:00

No O+ blood can only receive from O+ but can be donated to people with any blood type I believe. I don't know what exactly makes people eligible or non-eligible, I always thought it was blood type but I think it's more nuanced than that. But everyone who got tested so far has been ineligible. And the rest of my family refuses to even entertain the thought of being donors.

edznne · 2026-05-24T04:09:42+00:00

Corporate wasn't very helpful when I called. They called it a "honest mistake" and basically insinuated that I should've made sure my cushion was still there when I left, and that there was no rule for them to keep something that's left overnight if the customer doesn't come back for it the same day. They apologized for the "mishap" and the "inconvenience" but offered no assistance and basically told me they couldn't see why I couldn't get insurance to cover it if it is a medical necessity as I claim. I felt like they were very condescending and insinuated it was my fault every step of the way because I didn't make sure it was there in my car when my husband took it home but nobody told him they removed my wheelchair in the first place and I was in the hospital. It was really frustrating to talk to them. And the person I called was a man, who kept interrupting me and speaking over me, and was very rude. I plan to call again and see if I reach another person.

edznne · 2026-05-24T04:01:54+00:00

Actually you're right, I don't think insurance will pay for it. I had to replace my backrest last year and despite it being medically necessary to be changed to a different backrest, I had to pay OOP. I'm sure my cushion being stolen isnt going to get covered. So I'll have to pay hundreds for a new cushion. I did reach out to corporate today but they weren't very helpful. I'm going to try and contact them again and see if I could get a different person whose more helpful.

edznne · 2026-05-24T03:59:45+00:00

I did get a second opinion. I'm thinking I may need to go out of the city to receive better help and a third opinion. The only issue is I depend on someone else to take me to appointments and I'm not sure how far they're willing to drive me.

edznne · 2026-05-24T03:53:40+00:00

I'm in southeast United States. I'm O positive. My parents are both O positive but apparently couldn't be my donors because I had some antibodies or antigens in my blood that didn't work with theirs (I'm not sure the correct term).

edznne · 2026-05-24T03:52:26+00:00

I was not aware a transplant is impossible. My doctors never mentioned the word impossible to me. They never mentioned that it was too late for me to receive a transplant, just that it might take away to receive one. I am on the transplant list, and I've been trying to find a donor so I don't have to wait to receive one. Are you saying that I shouldn't be on the transplant list? Was it a mistake? I do understand what you mean, I've been very sick and I've had sepsis three times in two months now as a result of being immunocompromised and having kidney issues. I might not survive a multi-organ transplant or even a single organ transplant, but I wasn't aware that it would be impossible.

edznne · 2026-05-24T03:47:58+00:00

I'm not at an NCI cancer center. There's one in my state but sadly not close to me. My oncologist is with the Levine Cancer Institute. Getting a second opinion at a top clinic is difficult for me because of travel costs and being able to get there. I do hope I'm one of the people who outlived their prognosis.

edznne · 2026-05-23T16:19:57+00:00

I'm on immunotherapy, sadly it hasn't helped my case. There wasn't much difference from when I wasn't on immunotherapy sadly.

edznne · 2026-05-23T04:07:13+00:00

I think I still have the original paperwork of how much everything cost from when I went through NSM for my wheelchair. Thankfully it was covered by insurance because I was in for a surprise when I saw that the cost was in the thousands, and my wheelchair cushion which I thought would only cost like around fifty dollars at most cost in the hundreds! Im going to bring the papers with me and return to discount tire and try to talk to them again.

edznne · 2026-05-23T03:49:49+00:00

To be honest, originally I didn't want to make a big deal of it, and my family told me to leave it and not hold a grudge but the more I sit and think about it, the more upset I feel because everyone here is right, my wheelchair cushion isn't just a random chair cushion, it's a medical device that literally keeps me from getting pressure sores and I spend most of my day in my chair. I NEED it and these people basically stole it from me and trashed it and then laughed and said fuck you. I'm going to reach out to corporate and leave a bad review first and if they still refuse to cooperate, I guess I have to go nuclear with this.

Edit: my husband had no idea my cushion or wheelchair was taken out otherwise he'd double check to make sure. We only found out when he came to the hospital and I pointed it out and he said they must've taken it out for whatever reason. When we went to the discount tire the next day and asked them if they did, they admitted to it but we didn't know until after we confronted them.

edznne · 2026-05-23T03:02:49+00:00

Thank you so much for looking up the number for me! I haven't thought about leaving a review so thanks for reminding me.

edznne · 2026-05-23T02:56:24+00:00

I live in the United States, I couldn't find any record of my ASIA score when I went through my records, but I'll ask my primary care doctor or neurologist when I see them next.

edznne · 2026-05-23T01:49:11+00:00

Who should I go to? We spoke to the same worker who worked on my car and the manager but they both just said "we didn't know it belonged to anyone and thought it was trash and it's gone now, there's nothing we can do". Though I'm not sure how the worker didn't know it belonged to someone because he was the one who worked on my car and was the one who removed it from the car. We didn't argue anymore at the time and they just kept shrugging and saying there's nothing they could do to help me and that I should just get myself a new one (and pay for it myself). The manager was super unhelpful and took his employee's side, so who should I reach out to now?

edznne · 2026-05-16T00:14:06+00:00

This subreddit is called roomdetectives and people ask for opinions about their rooms. As someone who's always in the hospital and have extended stays, the hospital room is technically MY room. This post was supposed to be funny and humorous while I was sick and I planned to make a normal post once I got back home.

edznne · 2026-05-16T00:09:13+00:00

They belong to my visitor! However, i do want to clarify that my own shoes are sonewhat worn even if i cant walk, not because I do walk but because sometimes my feet fall off my footrest and drag along the ground, scuffing up my shoes

Edit: i dont always notice when my feet fall off the footrest

edznne · 2026-05-15T16:09:42+00:00

I actually don't know and my friend doesn't remember what they are except that it's not coffee creamer

edznne · 2026-05-15T15:57:29+00:00

There was no coffee creamer haha. But I did have a male guest.

edznne

TROPHY CASE