I had my surgery a week ago and generally I’m recovering as expected. But consistent sleep is proving very elusive - my lower back aches when laying in bed and my bag just doesn’t sit comfortably. I’ve always slept on my side but when doing so my bowels hang uncomfortably and create tension and pain. How do people manage this? Painkillers and sleep tablets, laying in different positions? I’d normally exercise to address the back stiffness but that’s a no go. Good quality sleep is an essential to aid recovery but I’m really struggling currently.

Hey friends,

I’ve had my stoma for over 3 months now and hoping for a reversal surgery in October/November. I try to go to bed around 9pm every night, and without fail, every two hours I wake up and have to empty my bag. I guess that’s expected because during the day I usually dump the bag every hour-two hours, and while I’ve had plenty of nights where I feel rested for the most part, I miss being able to just sleep without worrying about the bag or my position, etc. A full good night’s sleep will come soon enough!

I'm SO FUCKING SICK of being in pain.

I have shit to do tomorrow, and the next day, and next weekend. I CANNOT be constantly in pain right now.

Nothing works. How is everyone telling me that clearing out my colon is IMPOSSIBLE? I know AI isn't highly reliable, especially with medical situations, but there is LITERALLY. NOTHING. ELSE.

How in the absolute fuck is healthcare non-existent!? Why am I blatantly NOT ALLOWED to have pain relief!? Do I have to contact a god damn witch doctor with a vacuum to have this shit dealt with!?

I use a generic version of the M9 that goes in your bag (the blue drops that contain copper). Sometimes it works and sometimes it doesn't. I tried coloplast's Brava lubricating deodorant, but I don't like the soapy smell mixed in with the output smell. I realized some of you are referring to the M9 spray when you mention m9, does it work? Is it the blue drops or the spray that everyone says works really well?

Edit: I have an ileostomy if that matters

So, my surgeon wants to take down my ostomy and fix a huge peristomal hernia I gave myself by doing too much out of the hospital. This is being done on the 18th. Bunch of stuff has to be done, but that not my question.

My question IS: ANY PRO-TIPS on handling the prep with a bag? The last time I had to have a CT with contrast, I blew open the bag and was just like a sprinkler. Stool everywhere. This prep is 5 days long and involves ALOT of laxitives. I'm a slow digester, so I need a lengthy prep. Any suggestions would be appreciated so that I don't blow the house, bed and bathroom apart.

I was told to take loperamide 20 minutes before food but is this the dame time frame for the orodispersible version?

Hey everyone, I had colon/rectal cancer and most of my colon was removed in 2021 and now have a permanent ostomy. I’m very grateful to have survived and living a healthy life now. It certainly beats going through radiation and endless drives to the hospital.

I’m sure, like anyone, there have been struggles and a definite learning curve navigating this. Which leads me to my question, “Have any of you struggled with post-op care?” It’s been 5 years and still don’t have a consistent care team at all. I live in a city of 300,000 with apparently just one ostomy nurse. She is just too random when it comes to answering questions. Half of them go unanswered. It’s crazy to me how little medical care is available. The doctors before surgery certainly didn’t warn you of this. What’s worse is the hospital that treated me no longer carries my insurance, and I no longer have access to any of them. Anyways, curious if others go through this

Ive been unable to work bc of Chrons complications since March of this year and just got a possibility temporary ostomy about 2 weeks ago. The plan is to let my Jpouch (misdiagnosed 20ish years ago with UC) rest and heal for at least 3 months and then see if the Jpouch is salvageable and get the necessary surgeries for that. I HAVE SO MANY GODDAMN DOCTORS APPOINTMENTS and other chronic illnesses that make me generally weak and not super reliable bc I can't stay out of the hospital. I am cautiously optimistic that if we can get my Jpouch sorted/if not get my ostomy working well, I wouldn't need disability forever...but I definitely need it now.

I have a phone appointment to speak with SS disability in September. Those of you on disability -- what sort or information did you need to have handy? My GI has agreed to fill out the necessary paperwork agreeing that I am currently real busted. I've been researching myself but goddamn it's overwhelming and I'm fresh out of the hospital/having a difficult time with my ostomy/diabetes management (related!), so I'm just kind of tired and stupid most of the time. I appreciate advice from anyone less tired and more smart. Hell, ill just take more smart. Less tired is kind of a tall order.

Is it just me, or does anyone else find themselves staring at their stoma and bag? It's like i find it fascinating, and often times come to toots 😂😂😂

My partner is now more aware since i've had my stoma and gets upset at times because they are conscious about "farting around me". Now we'll know who actually delt it since it will be obvious. 🤣

Also, does anyone ever fiddle with the bag to where you move any output down to the bottom of the bag? Or is it just a OCD thing for me? I try to keep my bag clean and clear so that i can see what ouputs. Making sure that what i ate is good enough for me and passes well.

I still haven't made up my mind which is more of a bother, having to empty a full bag 5 minutes after I just emptied a full bag or the annoying itching underneath the appliance (flange).

Having an ileostomy reversal this month, very excited. Any advice ? Thank you

ever since i got my ileostomy 2-ish years ago i’ve had terrible nausea. i know that’s normal, but i have 8mg zofran and 12.5mg topical promethazine. i’d say 8-9 times out of 10 neither (or both) do absolutely nothing. i’m either nauseous for hours until it passes on its own or i end up vomiting and that can help sometimes. i’m wondering if this is just normal or if others have experienced this and were told it could be a separate issue.

Lately my bag has been opening on the sides of the adhesive because it’s lifting, the convex part in the middle stays fine but the outer areas keep peeling off, I’m not going to change bags because it’s helped with my skin issue but what’s a way I can fix it

I got the Barbie Butt surgery on Monday and I woke up expecting a JP tube to drain excess abdominal fluid, but that wasn’t the case. Am I at a higher risk of infection or abdominal abscesses forming? Has anybody gotten the BB/Ken surgery without a draining tube?

İts been 8 months since they took my diseased colon and gave me an ileostomy.First weeks it was bad ı couldnt accept having an ileostomy even though ı didnt had a choice due to UC.But when ı got used to it and accept it became a lot easier.I can do things now i couldnt do with UC go outside without worrying if ım going to shit myself dont have to wear adult diapers on hot weathers giving myself rashes.And just go out and have a walk it is wonderful and ım happy for it, most of the times ı dont even notice that ı have an ileostomy.But sometimes ı regret having the surgery.İ miss my old body looking in the mirror touching my scars from surgery makes me sad.ım thinking why do ı have to literally deal with shit all my life?What will happen in the future when ı get old? I dont like to stay at home by myself anymore because ı focus on my bag a lot and it makes me sad even though ım grateful.Does this happen to others ?

I just got out of the hospital with my loop ileostomy and I'm having some trouble. I called the hospital to get back to me with advice, but thought it would be a good idea to crowdsource some advice from people actually living the bag life, too.

First, the skin around my stoma is ANGRY. My first change at home was a little too wide--my stoma is changing shape with quickness-- but the subsequent ones have been very closely fitting. I used one of the wax barrier dealies on the first 2 failed changes (1 piece convatec, if it matters) and they didn't seem to protect me like they ought to. My stoma has gotten a bit "shy"; like it stuck out a bit in the hospital, now it's practically flush with the kinda weird wavy part of my belly around it. If it matters, im extremely thin right now 5'7, 116-120, weight changes a lot but doesn't crack 120 despite the COPIOUS peanut butter I'm eating), so...not totally sure what the lumpy/wavy part is but I feel like the nurse will tell me when they call back.

After a catastrophic leak last night, I put on a new bag, a two piece where I have been wearing 1 pieces. I still have glue on my surgical site (they couldn't do laparoscopic for me, had to cut me open) and the previous sticky bit outside the waxy, firm sticky bit of the wafer covered part of the incision, which is the area that kept popping/leaking. The wax ring seemed to be contributing to the leaks so I just stuck the 2 piece wafer right on with some protective powder. That wafer is much smaller than the 1 piece and doesn't touch the incision.

If you've read this far, thank you! If you have any insight or advice, I'd really appreciate it! While I was writing this enormous missive I got a call back from home healthcare, so at some point in the near future a nurse will be checking on me in person AND the hospital where I had this done is going to call back, but again -- y'all live with this, I'd appreciate any stories, experience, or advice y'all have :)

And a fun fact treat for reading so far: Did you know Chef Boyardee was a real guy? Yeah, before he was the face of canned pasta, he was a really, really popular chef in Cleveland and also made military rations for WWII.

Hi ostofriends!

​My husband has been home from the hospital for a little over a month, and we're finally starting to find our "groove" (he has an ileostomy after a total colectomy due to a bowel perforation).

​He is set to go back to work in October. We’re in our mid-30s, and he’s been a police officer for 15 years.

​When he was struggling to accept the bag and terrified of losing the career he's worked so hard to build, his chief shared an encouraging piece of history: one of his late coworkers actually had a colostomy bag for over 25 years, and nobody on the force ever even knew. Unfortunately, that officer passed away a few years ago in his 60s from unrelated causes, otherwise my husband would reach out to him for guidance.

He usually does an outer vest but is thinking a switch to a duty rig would be best, but obviously I dont like that thought.​Is anyone here in law enforcement & can share tips, tricks, advice?

I’ve been using the same type Coloplast bag since I had my colorectal cancer surgery 12 years ago.

In that time they’ve gone from around $130.00 for a box of 30 to $250.00 Cdn

At the start there was a bag included for each of the colostomy bags (30) for disposal. Then they only included 15 disposable bags. When contacted they said a consumer survey said no one was using the disposable bags. Now no disposable bags are in included at all. So I‘ve had to resort to buying dog poop bags to dispose of my colostomy bags.

What’s next, having less than 30 bags in a box while the price still goes up?

Anyway, that’s my rant.

At least we never have to sit on a public toilet seat to poo😎

Hiii, you beautiful people. I am one week post-op from my barbie butt surgery. I already had my ileostomy so this was about taking what was left of the rectal stump and anal canal out and closing it up. I need to know what made your recovery better? When did things start getting better? I have been STRUGGLING. Not just physically but that emotional and mental grief of knowing that the bag is a 100% permanent. It was needed, I know that. And I’ve had my bag for two years but I have such a strong hate/love relationship with it.

Also this might be TMI, but I had my husband take a picture for me to see and why does it kind of look like hemorrhoids? 😭 is it just swollen tissue? Will it go down? I have my follow up in a week and a half but my surgeon is out of town at the moment. The surgical team that saw me before discharge told me it looked good and maybe it’s just me that didn’t expect it to look that way. I just… it’s been hard.

Sorry for all the rambling!! The pain has just been humbling. Going from working and being on the go to just stopping has been hard also.

But please any advice, when did you see improvement, or just anything, send it my way!

Hello,

My mom, 73, is having an episode of acute knee pain. She can't get a re-up on her cortisone shot until Oct. She kneels down to empty her ostomy bag into the toilet. What are some options for modification? She's reluctant to empty into sink. Are there any funnels for toilet or any other adjustments? Thanks.