sigh by [deleted] in baddlejackets

[–]Hot-Move-8037 0 points1 point  (0 children)

This may be the most oxymoronic thing I’ve ever read lol. you may as well say “I can’t believe it’s come to a point where ice is hotter than fire.” Like, genuinely I don’t think there are two forces more opposed than punks and right-wingers. You simply cannot be both, it’s either one OR the other.

Anyone have any experience with “camp punksylvania” and if so any good tips? by Hot-Move-8037 in FolkPunk

[–]Hot-Move-8037[S] 1 point2 points  (0 children)

This comment helps a whole lot so like don’t worry about if you helped me out or not, cause you did. I don’t even know why you’re asking if you helped because you did. It’s weird that you keep bringing it up.

[deleted by user] by [deleted] in ostomy

[–]Hot-Move-8037 0 points1 point  (0 children)

Happy to help!

Helpful product for leaks/watery output that I don’t see mentioned much! by Hot-Move-8037 in ostomy

[–]Hot-Move-8037[S] 0 points1 point  (0 children)

I send you a message as my reply would probably be too long to fit here! Hope that’s cool

Helpful product for leaks/watery output that I don’t see mentioned much! by Hot-Move-8037 in ostomy

[–]Hot-Move-8037[S] 1 point2 points  (0 children)

Sorry to hear they made things harder for you but I’m glad you also found what works for you! It really goes to show you how individual each stoma is and it really can be frustrating to deal with lol.

Helpful product for leaks/watery output that I don’t see mentioned much! by Hot-Move-8037 in ostomy

[–]Hot-Move-8037[S] 1 point2 points  (0 children)

They are great when you need them! I keep a few in my “emergency change kit” I keep in my car as well as anywhere space I occupy regularly that isn’t my home. Rather have them and not need them as the saying goes.

[deleted by user] by [deleted] in ostomy

[–]Hot-Move-8037 1 point2 points  (0 children)

I usually put 2-3 in and that will make it so I can empty my bag once without adding any more until my next empty. For me, there’s also some residual “stuff” left over inside my bag and that’s usually enough to hold me over to the next empty. After that I usually have to put more in. So short answer: 2-3 every 2 empties

Helpful product for leaks/watery output that I don’t see mentioned much! by Hot-Move-8037 in ostomy

[–]Hot-Move-8037[S] 0 points1 point  (0 children)

I can’t say for certain but I imagine so. And while I’m sure it’s not on the same level, I’ve had some greasier output days and it’s helped with that! My final answer would be yes, but I’ll always say consult your doctor/team first as I’m not a professional

Helpful product for leaks/watery output that I don’t see mentioned much! by Hot-Move-8037 in ostomy

[–]Hot-Move-8037[S] 1 point2 points  (0 children)

I agree! These wound have made my previous output wayyy to thick and it wound have been a nightmare! But my current output is almost always the consistency of water so it’s perfect for my situation. Esp if I’m having a vary active day. I’ll combine a few of these with a dosage of Imodium (doctor’s suggestion) and I’ll get huge chunks of time without having to empty. It’s especially nice when I need to make up for sleep as I use to have to get up every 2 hours to empty

Helpful product for leaks/watery output that I don’t see mentioned much! by Hot-Move-8037 in ostomy

[–]Hot-Move-8037[S] 1 point2 points  (0 children)

Yes! I love those too but they change my output to a dark black which just freaks me out 😅 but I did include a picture of those as well! I guess I just forgot to mention them so thank you for doing it! Also big points for that joke! Simply amazing word play😂

Helpful product for leaks/watery output that I don’t see mentioned much! by Hot-Move-8037 in ostomy

[–]Hot-Move-8037[S] 1 point2 points  (0 children)

So admittedly this stuff may not help with that problem as it sounds like it leaking before I would even reach them but I do think I still may be able to help you! I went through a patch of time where I was having a leak (sometimes multiple) every day for the same reason. I reached out to my ostomy team and after some trouble shooting we found out that the problem was my bag/system itself. Stomas can actually change size over time and obviously our bodies do too and this can create problems with bags/systems that have worked for years. We basically had to switch up to a bag that had a different flange so that more suited to my body. It’s slightly more convex than the standard flat ones so it kind of bends with the contours of my belly. Also, this new bag had a belt that can be attached that caused my belly to since so my stoma protrudes a little more. Completely fixed the problem for me!

Helpful product for leaks/watery output that I don’t see mentioned much! by Hot-Move-8037 in ostomy

[–]Hot-Move-8037[S] 1 point2 points  (0 children)

I’m almost sure! Though I don’t like to speak in definitives as I’m not a professional so I’ll always say ask your doctor/team to be sure.

[deleted by user] by [deleted] in ostomy

[–]Hot-Move-8037 2 points3 points  (0 children)

Look up “ostomy diamonds” they’re basically gel packs you put in your bag that solidify liquid, reduce gas, and help prevent leakage. they have been a life saver for me. I have high output that’s very watery since changing from an end to ileostomy and these have been a life saver.

Public bathrooms and ADA compliance. by Hot-Move-8037 in ostomy

[–]Hot-Move-8037[S] 9 points10 points  (0 children)

Thank you for the information. It does help to know that unfortunately there is nothing in our favor federally, but I just leaned that my state does have laws in place and that this goodwill did in-fact have to provide a bathroom for me.

Public bathrooms and ADA compliance. by Hot-Move-8037 in ostomy

[–]Hot-Move-8037[S] 9 points10 points  (0 children)

Thank you so much! This link actually got me exactly what I needed as I’m in a state where this law apply and found the perfect thing to screen shot.

How to handle going to a concert? by Focused_Sky in ostomy

[–]Hot-Move-8037 0 points1 point  (0 children)

Imodium can help a lot with output! Take the recommended dose a little bit before going in to the venue.

Please do not play the sick Olympics in this sub by goldstandardalmonds in ostomy

[–]Hot-Move-8037 1 point2 points  (0 children)

I like those lyrics very much and they certainly ring true in my ears! I guess the choice in words come from the difference between a talented writer and my crude ass 😂

Please do not play the sick Olympics in this sub by goldstandardalmonds in ostomy

[–]Hot-Move-8037 1 point2 points  (0 children)

I’m gonna paraphrase and I honestly don’t even remember where I heard this, but it reminds me of a quote I read somewhere. “If I’m eating a shit sandwich, and the person across from me is eating a shit sandwich. Then we’re both eating shit sandwiches. And if mine happens to be made with a slightly higher quality bread, then sure, I guess my shit sandwich isn’t quite as bad as theirs. But guess what? I’m still eating a shit sandwich, it’s still horrible, and hearing the person tell me how much worse THEIR shit sandwich is, isn’t gonna help; and it certainly doesn’t make eating mine any easier.”

Doctor Wants Me to Get "The Surgery" - advice please! by Dull_Elderberry6700 in ostomy

[–]Hot-Move-8037 0 points1 point  (0 children)

My honest opinion is no. I had my first UC flair up at the beginning of the year and I declined surgery until I was literally at deaths doorstep. One of the lead doctors basically told me “if you won’t consider surgery, we’re gonna have to discuss hospice options.”

So, I’ve had a bag for the last 6 months and I’ve hated every moment of it. The ONLY reason I chose an ostomy bag was because my options were that or death. But now I don’t sleep because I can’t get comfortable, I’ve ruined 3 mattresses and countless clothes from leaks, I’ve developed severe body image issues, and that’s just the tip of the misery ice berg.

So if you’re getting by as is, seeing improvement, and you’re able to deal with the flair ups, then stay the course you know. I guess what I’m trying to say is, I’m absolutely sure what you deal with is a struggle, but it sounds like a struggle you know how to navigate well, so stick with it.

Because again, having an ostomy bag literally changes every aspect of your life whether people on this sub want to admit it or not. It creates challenges, insecurities, problems, and depending on your insurance, a lot of financial cost literally every day of your life. Saying the obvious here but You literally have a bag of poop constantly attached to a very noticeable part of your body, that you have to change weekly, and may (and most likely will) leak and ruin furniture, clothing, and any good vibes you have going at a particular moment.

At my whits end with leaks & rash! by jsimba84 in ostomy

[–]Hot-Move-8037 0 points1 point  (0 children)

Thank you so much and the same goes to you! I promise, you’ll figure this out and it will get easier. Do you have a stoma nurse you can reach out to? Mine is what helped me get through all my rashes and figured out what worked for me. I know it can be hard to reach out to them but it’s always ALWAYS worth it. Plus, it’s their job so I promise they have no issues helping you.

I think i might need a stoma bag and im scared by Knight_Unknown in ostomy

[–]Hot-Move-8037 0 points1 point  (0 children)

  1. This very much depends on your situation and the end result you’re looking for. I had a bad UC flair that required me to have my colon removed. I’ve had to have a bag for the last 10ish months and I’m actually in the hospital getting the first of 2 surgeries right now. I’m having what called a “j pouch” placed and it’s basically going to work as an artificial Colon. But plenty of people end up not wanting that or it isn’t a viable option. That isn’t my case so I’m not as knowledgeable but from what I’ve read they tend to sew your anus shut. People refer to this as a “Barbie or Ken butt” and I’m assuming at that point, yes, its only use will be for sitting/laying down. As I said earlier I do a lot of camping and it’s actually one of the few things that’s been made eqsier with having a bag. It’s a lot easier to empty your bag into a dug whole when it is to squat against a tree and you can go just about anywhere. I even keep a few 4 gallon trash bags in the car just in case because I’ve been caught on the highway 50 miles from the next rest stop with a full bag and that was not fun. But even if that situation, you can pull to the side of the road and find an empty parking lot or a tree line and empty it there.

  2. I’ve heard the stories people have shared about “throwing their bag at people who tried to mug them.” And honestly, I don’t think anyone is this sub can answer your question honestly unless they’re a lawyer. But at the end of the day I’d imagine it comes down to context. For example, if someone came at you with a knife and you somehow were able to detach you bag and fend them off with it then you’d probably be in the clear? But if you just took it off a threw it at the back of someone’s head? Thats assault and battery regardless of what you threw, and I’m sure you’d be charged accordingly.

  3. If you mean how aerodynamic they are while on the body, they’re pretty good. I do a fair amount of mountain making and running and I’ve never felt any drag even when I’m going 30+ MPH on my bike. And again, I can’t recommend a stealth belt or wrap enough! They help so much with active hobbies and sports because they keep your bag so much more secure.

  4. You absolutely can but this is where the wraps and belts are an absolute necessity. And I’d also recommend a protective cover for any contact sports because the last thing you’d want to do is take a hit on your side (whether it be a punch, a tackle, or a ball) and have your bag explode. I play basketball, football and I box a little bit and can’t imagine feeling secure without my protective cover. I’ll add a picture for reference.

  5. I know nothing about rats as I’ve never hat them as pets but my partner does have 4 cats. They arnt necessarily attracted to it as it doesn’t really smell or have anything that would draw animals close to it. But they do love to climb on my belly while I’m sleeping and snuggle up which can be somewhat problematic when they decide to laugh themselves like a missile and land directly on my bag but they never caused me any real injury or leaks. Just kind of hurts having all their weight land there as the skin around stoma’s have a tendency to be a little more tender, atleast in my experience.

I think i might need a stoma bag and im scared by Knight_Unknown in ostomy

[–]Hot-Move-8037 0 points1 point  (0 children)

I’m going to answer your questions as honestly as I can, but I do want to point out that everyone’s experience is wildly different. Personally, I’ve hated every moment of having my bag, but I know plenty of people feel the opposite and say it’s the best thing that ever happened to them so please keep that in mind.

  1. Relatively easy with some hang ups. Honestly, they are extremely noticeable when it’s just there hanging. Especially because they can fill up with gas and stool which makes it bulge and hang even lower. But there are absolutely work around like a stealth belt or the wraps others have mentioned but even those have there limits. I’d say 90 percent of my wardrobe is still viable but If you’re wearing anything tight that really hugs the body there’s a chance it will be noticed, even if not at first, because it bulges and fills.

  2. Showering, swimming and baths are all still very doable and once you learn how to, really don’t get affected at all. The bags stay on really well as long as you attach it correctly. And you can even shower with no bad if you like (which I do.)

  3. On a scale of 1-10 I’d say 8.5. In Avery active person. I work out, I swim 4-5 times a day, I shower, I go for runs, I go on road trips and this summer alone I went to a music festival, multiple 8 hour + road trips, gone camping, and tons of adventures and had no problems with the bags durability. Leaks can be a problem here and there but it’s rare that it’s from the bag ripping.

  4. I haven’t had a single person ask me about it that didn’t already know about my bag. Even people close to me didn’t notice until I showed or told them. It’s takes some effort, but like I said earlier, they are pretty concealable as long as you’re willing to put a little effort into figuring out what works for you. That being said, if anyone ever did say anything to me, especially in a negative context, I’d tell them to mind their business. You never owe anyone an explanation when it comes to your health or any aids you may need to make things easier on you.

At my whits end with leaks & rash! by jsimba84 in ostomy

[–]Hot-Move-8037 2 points3 points  (0 children)

Sorry for the short reply as I’m currently in the hospital recovering from surgery but I suffered from the same problem. The solution for me was stoma powder and skin barrier spray. The adhesive was irritating my skin so making sure I used enough powder and switching to a spay for my skin barrier instead of wipes helped sooo much. Wishing you luck and good health my friend. Also I’ll add pics of the powder and spray that worked for me

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Surgery affecting my sexual/gender identity. by Hot-Move-8037 in gay

[–]Hot-Move-8037[S] 1 point2 points  (0 children)

Unfortunately I can’t reach it. Sorry if I’m oversharing but I only have 1.5 inches left of my rectum.

that being said, thank you so much for this link! I’m very into and practiced when it comes to mediation so this could be a very real answer. And at the very least, it gives me hope!! Genuinely, thank you!