I can only describe it as sandwiched in between these two skin flaps but the rest of my stomach is flat. I had a revision done in January and it wasnt this bad until the stoma started shrinking (Another thing I'm having trouble with is cutting the wafer to size). As of right now I use a flat Coloplast one piece with a Holster ring and paste. Any tips would be appreciated.
Reversal surgery tomorrow morning. Prayers appreciated.
The skin around the edge of my stoma gets so itchy when bag is on. I always wear barrier ring. If skin is raw I put that protective powder stuff on and the skin barrier spray. I need help with this because it interferes with my day and my sleep at night.
Tomorrow i get my proctocolectomy. Wish me luck. I hope its not as bad as it seems.
I was attending a NOA meeting (Nordic Ostomy Association) and a couple of ladys from Ampa Medical were showing us a new appliance that is in development. Only for people with ileostomy though.
Check out the videos low on the page. Seems like a good alternative for some people.
I have had my ileostomy for nearly 36 years and I would literally be dead without the op that formed it. It's just a fact of life to me now, yes, got an ostomy, but I still have random thoughts about it every so often:-
I miss farting, that feeling of expectation then letting rip with a huge, thunderous clap of gas. Also, sitting on the loo for 10 minutes enjoying a good poo. Didn't even have a mobile phone pre-op to surf, had to rely on a magazine or book.
Will never have my fantasy of being shipwrecked on a (well-stocked) desert island, because where am I going to get ostomy supplies???
I love my sleep, and used to go to sleep on my stomach. Can't do that now. Also, bags don't respect the idea of having 10 hours of straight sleep. We have all had that feeling of checking their bag and finding a highly inflated unexploded bomb, ready to go off at the least movement. Am now an expert of getting out of bed without bending.
I miss the freedom of just getting out and about without having to worry about leaks, or strange noises emanating from my abdomen, or worse, strange smells, and tiny itty bitty handbags that only hold a lipstick and debit card are just a pipe dream.
I laugh at the thought of wearing white, or light coloured, trousers. I get so paranoid if I am having a run of leaks that it shows through my clothing, especially if I am away from home.
All in all, having an ostomy sucks, but it is far far better than the alternative.
Not sure if this is common knowledge, but I never considered this could be a thing until I saw it on a tiktok and decided to try it out myself.
Not sure how well it would stay in during the day, and I’m guessing it’d potentially decrease the amount of bag space, but this seems pretty helpful to hide the bottom part a bit, and not have the plastic parts poke you as much under your clothes/get snagged and pull the velcro.
It also seems like it could prevent leaks by not allowing all the flaps to unravel if the velcro comes undone.. but again, I’m not sure how well the thin fabric would hold it.
Is this an intended feature? Seems pretty cool, I’m surprised I haven’t heard about it before.
Had my reversal May 4th. It’s been going ok. Still trying to poop regularly. Getting back to eating normal foods or basically anything I want is hard lol. I’m use to eating so strict. I’m still eating healthy because I’ve been stuck on this low fiber diet for the past 4 months. I’m still sore around the site when moving around and sleeping but I’m getting my staples out tomorrow I’m nervous 😥 some pictures from 1 week old staples to 3 weeks old .
I know a lot of people like the Velcro / Lock ’n Roll style closures, but I just can’t stand them.
No matter how careful I am, I seem to end up with output on my hands or around the end of the bag. It also feels like too much fussing with toilet paper, sometimes multiple wipes, and I don’t want to deal with washing the closure area out every time. It just feels like a hassle to me.
I still prefer a Hollister clip. For me, it’s faster and cleaner.
What works best for me is telescoping the end of the pouch — basically turning the outlet slightly inside out when I empty it. With a clip, I rarely need toilet paper. After emptying, I turn the end back the right way, and I can even use the clip to gently scrape any remaining output back toward the bag before putting the clip back on.
I also use small black plumbing O-rings from Home Depot over the clip for extra security. I don’t feel as safe without them.
For me, the clip system is quick, simple, and efficient. I know everyone has their own system, but Velcro closures just never feel as clean or reliable to me.
Curious what others prefer — are you Team Velcro or Team Clip?
Is there a need for ostomy supplies in Gaza? I have some supplies that I can't use and would like to donate to help people in Gaza.
Got my ileostomy done 3.5 months ago, and started going to a gym a month ago or so since I want to build muscle.
What are your thoughts on doing ab workouts? I have been doing every other workout except abs and ones that I need to lay on my stomach/ or lean on it
Edit: Dear Ostomates - stupid auto-correct
I just want to say that you lot are a bunch of awesome human beings, as good as it gets.
This comes from a dad who was unexpectedly thrown into this ostomy-world by means of his 5days old son. The little one had a small intestine atresia, which led to a loop Ileostomy. Followed by >6weeks in the hospital, multiple infections, learning about ostomy-care, being faced with SO MANY products and brands, learning to reinfuse 💩 into the lower part of the intestines, figuring out the correct setup so bags stay on 12h instead of 90min, being sent home to “recover” only to rush back to the hospital a few days later with a Prolaps, which just wouldn’t go back in… which ultimately forced the surgeons to pull in the reversal surgery which was scheduled for weeks later, which is now almost a week gone.
The smallest portions of breast milk are being bottle-fed into a VERY hungry, tiny human and it’s hard to understate how much joy & relief it brings to say:
Ladies and gentlemen, there’s 💩 in the diaper.
While this experience was incredibly scary at first and the future is still uncertain in many ways, I learned through communities like this one, that “this world has always existed”. What I mean to say is that it felt so unreal being faced with an ostomy, because it’s something I’ve never ever considered to even exist.
Communities like this taught me that while everyone’s journey (and ostomy) is unique, no one is alone - and there are people (and products and procedures) to help.
I’m a big fan of talking about things and creating awareness, so learning that ostomy-influencers exist, gave me hope that social media is not always terrible, but can be used for incredibly good things, too.
P.s. apologies if some of the language would be considered offensive, it comes from good intentions, filtered through English as a second language.
P.p.s once insurance has been dealt with and we only need diaper changes on a regular basis (every 3h, instead of a bag change every 2d-3d …) we will look into donating/sharing the month-worth of supplies, so if anyone is interested in that (located in Germany) or has any good ideas, that’s very welcome.
i'm going to be seeing my ostomy nurse to get refitted for a hernia belt (it's preventative as I use a wheelchair and they just want to make sure we do everything to prevent hernias). but i had to take a survey and i dunno if yall have to do surveys before your appointments so i wanted to share the questions. They are a scale of strongly agree to strongly disagree and the middle answer is unsure. hope this can help some of yall when discussing your feelings with your medical team.
I feel that I have recovered from my stoma operation.
I don't like to touch or see my stoma.
I have a meaningful life even with a stoma.
I enjoy food and drinks as much as I did before my stoma.
My stoma inhibits me from having a proper bath or shower.
I sleep well without worrying about my stoma.
Because of my stoma, I feel like I am not in control of my life.
I am reluctant to mix socially since having my stoma.
I have now accepted my stoma as part of my body.
I cannot get over the shock of having a stoma.
Because of my stoma, I limit my range of activities.
Because of my stoma, I feel that I will always be a patient.
I am always conscious that my stoma may leak, smell, or be noisy.
I have accepted the changes in my appearance which were caused by the stoma.
I am grateful that the stoma has given me a new lease on life.
Caring for my stoma is difficult.
I feel like I am less sexually attractive because of my stoma.
I feel angry about having a stoma.
Despite my stoma, I feel I have a rewarding life.
I will be able to manage my stoma in the future.
I am always anxious about my stoma.
With my stoma, I feel that my life-threatening experience has passed.
I can engage in a variety of activities despite having a stoma.
Hi everyone. I was wondering if you guys get your ostomy bags covered by insurance? I’m turning 23 soon and I’m just worrying about the costs in the future so I’m trying to plan ahead. Any advice would be greatly appreciated.
This came out of my distal opening of my loop colostomy.
It has the texture of… beeswax?! It smells so weird, like a hospital (iykyk) mixed with mucus… This is the first time I’ve seen this.
Usually I get clear mucus. I sat on the toilet and tried to push, but nothing came out. I do have some blood usually when changing my bag, could this be dried blood that’s mixed in with mucus and dead cells?
I’m actually terrified and freaking out because I still have nightmares about pooping out of my bum and before my stoma it was absolutely traumatic.
As the title states, my colostomy reversal is tomorrow morning at 6:30am! I am equal parts happy and terrified. It is open surgery through the same scar, the first time around that was really painful, but I was also severely septic and nearing death.
My surgeon had me on a liquid diet yesterday and today, with today being clear liquids only because I also did a bowel prep (we are doing a colonoscopy during the surgery.) I’ll be admitted for at least five days, and have been collecting bits and pieces of info from everyone here.
I want to thank this incredible community for helping me (and continuing to help me as I recover) on my journey. I had ruptured my sigmoid colon one month after jaw surgery, so it was a very difficult time when I had my original surgery. So many of you have been so incredibly kind and this group is very unique. I hope I can help others with my experience, if anyone has any final advice before I leave in 6.5hours, it would be much appreciated. They don’t predict too much complication- I am missing my sigmoid (Heartman’s procedure) but have my rectum intact, but remembering the pain of the initial incision is tough.
Thank you all again for being so kind, it truly means the world to me and my family (and my butt) 💗💗💗
I haven’t been able to eat or keep anything down in days and lost 6 pounds in less that a week, constant watery output. And today I puked blood and couldn’t keep most of my meds down and the ones I did didn’t even absorb cause so much diarrhea.
My poor husband had some big polyps he had to get removed a week ago and was fine but today there was a loooot of blood and his doc told him to come since he shouldn’t be bleeding this long after his procedure.
Since I was likely coming to the ER anyways we came together.
We’re both getting admitted and both getting scopes tomorrow! Unfortunately we likely can’t room together since the beds are completely full and finding one with 2 beds would be next to impossible. But theyre gonna try to at least get us in the same hall.
This sucks yall. My husband hasn’t spend the night in the hospital since 2005 from a snake bite. And only been one other time because of heart palpitations (but that ended up being fine).
I don’t have anxiety for myself, I’m used to this and it’ll just be the usual bowl rest and treat the symptoms. But they’re gonna give me Botox for my gastroparesis for the first time so hopefully that helps at least those symptoms. However the anxiety for my husband is awful. I always picture worse case. And something has to be really wrong for him to agree to come.
Send hugs or dad jokes. And thanks for listening to me vent.
Hey y’all,
Got my loop ileostomy reversed on 5/15 and finally got home today (5/19). Overall things actually seem to be going pretty good. I already had solid foods in the hospital and I’ve been eating some regular stuff. Mostly just dealing with loose stools, gas, and obviously some surgical pain but honestly it hasn’t been terrible at all.
One thing I’m wondering though from January until now I’ve lost over 100 lbs. I was over 300 before all this started and the weight has just kept dropping. I’m a male and wanted to know if anyone else had major weight loss through this whole process? Is that pretty normal after all this?
Also… HOW do I stop my ass from being on fire from these urgent poops 😭😂 because good lord. I swear every bathroom trip feels like my body is trying to speedrun something.
Other than that everything seems pretty normal honestly and I’m feeling a lot better than I expected this early on. Just curious what everybody else’s recovery was like after reversal. I’d also love to chat as I am off of work for sometime so feel free to connect and start a convo, love yall!
So, 3-year colostomy here. Like many of you I'm sure, I'm detecting a bit of herniation, and I'm thinking some sort of hernia belt might be in my future. Anybody have a good one they like? I messed with a Coloplast one but didn't care for it at all - it seemed to pull on my bag/wafer in a way that I thought would cause it to detach early.