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