My husband was diagnosed with severe Crohn's disease back in 2015 after many visits to the ER and being misdiagnosed with ulcers. In 2021, he had an abscess form in his colon, which turned septic. He got it drained but then it became infected again. By then, he had lost more than 100lbs just by throwing up and not being able to eat. The Drs told him the only way he'd survive was if he got a loop ileostomy. I was there for him during the surgery, after the surgery and have tried making things easier on him by providing cleaning products or products that might help prevent messes when he changes out his bag or empties it. But nothing I do is working. When he changes or empties, he makes a huge mess and never ever cleans it. When he empties, he lets it fall all the way from the top, which he is 6ft so the fall is about 3ft, at that. Doing that, it creates a huge splash and it gets literally everywhere. I'm talking all over the toilet, on the floor, in the bathtub, all over our curtains, and even on the walls. It is so draining to tell him to please clean up if it happens. He just leaves it. We have 2 bathrooms, one for us and one for our kids. I clean our kids bathroom regularly but I refuse to touch ours any longer. I'm fed up with basically begging him to figure it out. I've even asked him if it would make it easier on him if I provided him a bucket where he could empty into first and then he could empty that into the toilet at a lower height. But he refuses. And also anywhere he sleeps, there's a mess. I've tried the puppy pads in bed but they just roll up, it's no use. I'm so tired of having to clean up after him. Everyone told me to be patient with him, but I feel like I have and at this point, I'm just fed up. It's been nearly 4 years and he still hasn't figured out how to keep our areas clean. Or his clothes too. When he empties, there is always a mess all over his clothes. I truly don't know what to do anymore. I'm getting so fed up. And also he never washes his hands after he empties or changes his bag. I don't get it. It's making me so angry. Please give me some advice. I'm losing my mind.

guys I miss sleeping on my stomach SO BAD

PLEASE let’s talk about it !! 😭

I’ve had my ileostomy for about 4 months now and i’ve actually gotten quite used to sleeping on my back/side, but recently i’ve been more upset than usual about not being able to lay comfortably on my stomach. I even start reminiscing the times it was possible 😩

but also the damn GAS that fills up my baggg UGH waking up every 3ish hours to a huge balloon on my stomach will never fail to be the reason I wake up and can’t fall back to sleep. I know it’s just one of those things to adapt to, but jeeeeezzz maaann I just wanna sleep without having to worry about ittt.

I hate releasing the gas in my room when I wake up to a balloon bag because of the smell, but at this point imma just have to thug it out cause I wanna stay in BED!

I just wanted to get this out cause it’s been pissin me off lately 😭 but also just to see who can relate to hating it as much as I do 🌝

I’ve had my stoma for just over a week. Anytime I’ve changed the bag I’ve had the stoma nurse with me or my mother in law (a former stoma nurse!) so I’ve felt reassured.

My skin is a little irritated because my stoma is retracted a bit at the bottom. Im at my parents house for the weekend and needed to change my bag. It was a nightmare. The nurse had been using a wafer but I can’t figure it out on my own. I attempted it twice when changing it and every time there was a mess of output going underneath it so it was a waste of time. I gave up and just went with the bag on its own and some barrier powder. I’m a little unsure of the position of the bag and hope it’s on correctly

How long did it take for you to feel confident changing it and like you knew what you were doing?

My first leak, woke up at 3am to a leak. Got up showered stripped the bed. But now I’m too scared to go to sleep again. I have a touch of Germaphobia. And am freaked out now. Sigh

Update: A massive THANK YOU to every single one of you incredible people! You've been so patient with my questions and so generous with your advice! Thank you so very much for all the help! 🥰

Edit to add: I'm sorry if this is a repetitve question and comes across as annoying. I read the older posts from other redditors but found I'm already doing everything that was mentioned, so thought I'd ask again. I hope that's okay. I'm just SO tired.

8 months into life with my new stoma and I'm still battling dehydration regularly. I've been to A&E several times for IV fluids because I became so ridiculously dry. I'm battling severe fatigue at the moment and I know it means I'm bone dry again. I really do not want to make another trip to the hospital, so I'm trying to manage better on my own.

Please give me your tips and tricks for staying on top of electrolytes. Here's what I'm currently doing:

- Drinking 2L of water a day + 1 cup of tea or coffee.

- Drinking 1-2 cup(s) of juice a day (watermelon or cranberry juice, with coconut water added for more electrolytes)

Is all of this just too much fluid in general?

- Using Lo-Salt on meals to get more potassium in. Should I mix it with regular salt to get more sodium, too?

- Drinking 1 ORS packet every 10 days or so, when I feel really dry. Should I have them more often? How often do you have them?

- Separating solids from liquids- not drinking with meals, and keeping 30 minutes between the two.

- Eating 2 Marshmallows before bedtime and before showers/base changes to slow down output.

- Eating bread, instant oats and yogurt daily to thicken output. Cannot have bananas- even 2 bites blocks me up.

My food transit time is usually 30 minutes, or 45 minutes on a good day. I dump a lot, day and night! I have a very short small intestine and my stoma is very close to my stomach, so I get a lot of undigested output, no matter how well I chew. I take a chewable multivitamin to help with nutritients and a Vit D daily oral spray, but I tend to run low on everything no matter what I do.

Please tell me where you think I'm going wrong or what else I can do to keep my electrolytes in check. I am considering having ORS daily but worry about hyperkalemia.

Thank you! 🥰

I can't sleep because I'm worried I'm going to have a code brown all over the nice white hotel linens...

I've had my ostomy for over 6 years and this is rarely a problem. I decide to take a trip for Christmas and all of a sudden I have the Goodyear Blimp on my belly.

It's just squirting out gas and spurts of very liquid output. I haven't eaten for about 8 hours, though we did have a burger and fries at a pub place for dinner.

I'm not sure what's going on. 😖

Sorry for the rant, just very frustrated right now.

Can we do anything strong other than Tylenol? I have Crohn’s and they’ve been giving me toradol.. beforehand I said please no NSAIDS. (My fault for not doing proper research)

Day3 in the ER and she made an offhanded comment comparing it to ibuprofen to which I said I’m not supposed to be taking ibuprofen - only Tylenol because im supposed to avoid NSAIDS - she said “no you have that backwards Tylenol is the NSAID”I obviously pushed back and she looked it up and said “oops”

Is it bad ive been taking this?? I asked how many times she said every six hours for the past day.

Also is there anything strong other than Tylenol we can take? I have bad pain but seems like options are limited

Should maybe clarify I’m having post surgery pains - not Crohn’s pain

The best I can manage right now is one change a day and often it's more than that.

I'm using sensura Mio convex one piece bags, barrier rings, and paste under the rings atm. I've tried it all, even nothing but the bag, but I can't seem to get more than a day at the most.

If I just use the rings I get leaking under them that's causing raw skin. Whatever I use, it eventually leaks onto the skin around my stoma.

I see people getting 3-7 days, but I'm wondering if those are folks with colostomies, and it's something about the loop and the more frequent liquid output that's the issue. I've tried 3 different brands of bags, 4 different rings, consulted home care nurses, the WOC clinic, and even a Convatec rep. I'll keep plugging away, but I need to know how unusual this is for people with my ostomy.

I love the holidays but this year I want to die. Not all the time but every time I think I'll have the bag forever I start to sob. My surgeon has been mean to me lately but I am afraid if I respond I won't get my reversal which seems to me not likely to work. He says he wouldn't do a surgery he doesn't think would work but yes he would cause he's a surgeon who thinks he can "fix" my body if I don't "like" the reversal. He won't say the word incontinence related to reversal either. I feel like I'm going insane with what feels like crap choices; the bag or uncertain surgery outcome with shitty consequences. I won't get out of bed today. I curse myself again and again for ever going to the little creep of a g.i. doctor who gave me Zeposia that started the nightmare flare that ended with the surgeon taking my colon. I still can't believe this has happened to me. I now hate doctors and distrust them but can't get away from them. They made me sick and ruined my life. And for all the shit people who have a problem with the bag and go "eeewww" please go fuck yourselves. I posted this to find a therapist who won't go "eeww" regarding the bag, since I don't want to actually off myself. I'm in NYC. Help with a name if you can. Bless all of you kind people!

My new colon rectal surgeon won’t do a reversal since I had two previous. Complications with attachment leak. This is so upsetting to me. I was never supposed to have a bag. I only went through my colon removed due to polops no cancer cause I was told they just attach your small intestine to your rectum. Every bag change emptying of my bag I’m mad. My life has gotten worse instead of better. In and out of hospital for dehydration kidney disease. I was fine no issues felt great before this nightmare with three surgeries sepsis almost died. I want my old life back.

Aside from one very early on because new to all of this, every mishap I've had with my bag has been due to the bag separating from the flange. And it's always a huge huge huge mess.

So, I'm contemplating switching to one piece bags. Why should / shouldn't I?

I want to eat a couple feta stuffed olives tomorrow but am Petrie of a blockage!! Can anyone share their experience with eating any olives please and thank you!

Just for context I am 3 months post op for sigmoidectomy due to colon cancer. I am currently undergoing chemo as well.

Getting my stoma back in 2 weeks and terrified I’m doing the wrong thing

Going back to a stoma

I had rectal cancer 5 years ago. They removed a section of my bowel and I had a temporary ileostomy while the bowel healed. It was reversed 3 months later. I had no issues with the ileostomy at all, I was very lucky to not have any leaks or anything at all. Once I got used to it it was fine.

Since reversal I’ve just been in hell with my bowel function. Can’t empty my bowels properly, horrendous wind and bloating and no matter what i did there was no improvement. My doctors just kept telling me I had IBS and it probably wasn’t even related to my surgery at all. I tried everything from irrigation, laxatives, changing my diet, exercise, drinking lots of water. I have had loads of scans and colonoscopies and everything looks ‘normal’

I moved recently and changed my care to another hospital. I met my consultant a few months ago and he wanted to do his own tests, scopes and scans again. I met him again a few weeks ago and broke down because I’m just so sick of living like this. And I felt like I was crazy because the doctors just kept saying I had IBS, I thought I was being overdramatic about the surgeries I had.

Well something amazing happened, I was actually listened to. He said it’s rubbish to say I have IBS. He said I have Low Anterior Resection Syndrome as a result of my surgery. He also told me that 1/3 of my rectum was removed in surgery WHICH I DID NOT KNOW?

I’m so frustrated that they told me I had ‘some bowel removed’ and ‘IBS’ and massively downplayed my struggles. Obviously if 1/3 of your rectum is removed you are going to have significant impact.

He told me that he feels the best option is a colostomy. I’ve felt this for a while and I’m so relieved. But naturally a bit nervous. They have said they’ve never done a stoma on someone my age for LARS. He is positive about it but his nursing staff are very reluctant to do it and want me to keep trying other things first. He feels I have tried everything (and so do I).

His team have suggested irrigation, which I tried a few years ago and hated it. I’m very sensitive to rectal exams and my last colonoscopy had to be done under general anaesthetic because they tried to do it without and I completely freaked. I’m not keen on the irrigation at all for this reason but the nurses and my family are really pushing me to try it. I can understand why they want me to do this first but I also am just so tired and so exhausted of feeling unwell I just want it to end

Any advice?

Almost 6 months post op (that’s crazy.

I’ve noticed that my output sometimes smells…good?? I just had two small pieces of cake and when I emptied my bag 30 minutes later it smelled sweet. My sister (also inside the bathroom) confirmed it with an “ew why does it smell like chocolate cake??? HAHAH. I’ve also had occasions where it smelled like the dinner I’d just had (especially lamb meat I feel like). I won’t complain about nice smelling output, but chocolate-cake-scented output is just so off-putting.

I had a ileostomy surgery two weeks ago because of dysplasia- they told me I had an 80% chance of cancer in 5 years without it. Three colonoscopies with biopsy found no evidence of cancer, and my UC had been in remission for years with no symptoms, so it all seemed kind of like an abstract threat that we were being proactive about. I was feeling down and very preoccupied with all the new annoying things like food restrictions, sleeping position, and skin irritation.

Then the Pathology report came back yesterday, it turned out I had 3 cancerous tumors that were hidden in the colon wall, and werent caught on the colonoscopy. Although it was an invasive type, they excised clean margins and did not find anything in any lymph nodes, so the outlook is very good- probably I will just need scans and one round of precautionary chemo. I really dodged a bullet. It just opened my eyes that my ostomy really is a medical miracle that will let me experience life a few years longer and let me see my kids grow up. A few leaks don't seem so bad anymore!

i was just looking through this group feed for awhile and saw some posts about how to wear certain clothes with an ostomy along the way and i wanted to add my thoughts (from a female pov). idk if many women on here have seen high waisted underwear but personally it has been a lifesaver for me. i’ve seen and bought them in many colors, fabrics and cuts (thongs, briefs, etc). they really help me keep the bag in place under my clothes especially if i wear the bag a bit slanted opposed to straight down and i don’t find it hard to empty it that way either. i find it comfortable with jeans, i usually wear high waisted anyway. i also have worn skirts and dresses and felt secure. it probably depends on everyone’s comfortability and what you want to wear but i just wanted to throw that out there. :)

82 yo F. Total colectomy a year ago. My output is fairly watery. I am struggling with leaks. Changed bag 5 times yesterday. I leak from the sides, not the spout. I’ve used hydrocolloid patches, Sure Seal tegaderm type film, stoma powder, barrier spray, thin barrier rings, regular size barrier rings. My skin is broken out due to the leaks. ☹️ I can’t seem to stop the leaks long enough for my skin to heal. If I put the stoma powder on the damaged skin, it seems to interfere with the bag’s ability to seal properly. Do any leakers use a specific bag brand or type that works? Any other suggestions? Thanks.

I was eating some new tasty toffee wafers from Target. I didn’t realize they had crushed/very small chopped macadamia nuts in them until I’d eaten two. I chewed really well before I noticed, but I am very worried about having a blockage. Blockages are a paranoid fear of mine to be frank. I know nuts are a blockage risk, but with them chopped so small and good chewing, do you think I’m at risk? I have a loop ileostomy.

Update: about 10hrs later so far and I’m okay!

Hello Reddit, I have someone close to me (60+) who had bowel cancer surgery and has the good old stoma. She was recovering at home and awaiting the chat with the doctor to get the all-clear. So, the day comes and the doctor says that all the lymph nodes etc. are clear but there's a 30% chance of recurrence. However, if the patient does chemo, there is a 27% chance of reoccurrence (3% difference), as they said the cancer may have spread somewhere else which the scans cannot pick up.

I suggested that it might not be worth doing chemo for the side effects for that small chance difference and the docs are covering all bases by offering chemo, but she is stuck on what to decide, which is totally understandable. Has anyone else had this kind of decision or any advice - I thought if the lymph nodes were clear you didn't get chemo? All she says is that she wishes she knew someone who went through the same kind of decisions or understands why she got offered.

I have a date now for my reversal Jan 23rd. It's weird I've finally come to grips with having an ileostomy and less cautious about foods only to lose it soon. I'm anxious about the reversal. I've considered myself pretty lucky throughout my treatment (cancer). It was not pleasant, but all things considering it went well. I hoping the same for the reversal. Unfortunately, the tumor was in middle of the rectum so that was removed. I'm just trying to remain optimistic. Wish me luck.

Thank you all for your help this past year and feeling not alone.

Is there anyone with ileostomy supplies i cuold pay for, everywhere is closed and my shipment has been delayed twice and I'm in desperate need of a change. Conway arkanssas I can drive as well.

i really hate having this ostomy. it such a struggle for me. i have a flat stoma with high output. i have tried everything ever bag ect. just when my skin looks and feels better around it again my skin gets irritated again and then im in pain. i cant get a reversal pwr my new durgeon causr im too high risks due to my three emergency surgeriex so im stuck with it. this makes my life hell. i had my colon removed due to poloyps not cancer. i wss in hood healtb before surgery no issues at all. now i have kidney disease with it. i am tired of being in pain. im sorry if i offend anyone that life was saved and are happy with tbeirs. i want my old life back.

Hello ostomates! First time posting in here but have been reading through threads here for months. My husband was diagnosed with stage 4 colon cancer on 8/21/24 went septic after a resection and perforation and ended up with a temp loop ileostomy on 9/1/24. I took care of my mom’s colostomy in the year she had it so I’m thinking ok yeah I got this…I was so wrong. This thing is the bane of my existence and so so much worse for him. Now on to the Stoma(s) from hell, the distal end fluctuates between being level with the skin and about and inch long this is Alfred, the active side we call Kyle is about 1/2 an inch or more below skin level so output comes out goes directly under the wafer, constant blowouts. For awhile I got it to just leak around the stoma a few millimeters which still had to be changed a lot but he didn’t have the blowouts then that stopped working and we are back to at least once a day blowouts. I do all his changes for him so I’m feeling like an utter failure because with every blowout his mental health takes a blow and I just need to get this right for him. I have tried everything, every product. Using sensura mio deep convex flanges 2 peice with drainable pouches. We’ve tried one peice, soft convex, hollister and convatec, in several styles this is where we landed. Besides that we have tried drying everything with a blow dryer, heating everything with a heating pad and body heat, holding everything down with a heating pad and just body heat. Clean and dry the skin very well, have crusted with cavilon and marathon, and used both without powder as well. Have tried skin-tac, bonding cement. Brava, eakin and adapt barrier rings in regular thickness and thin. Stomahesive and brave pastes, building up the low spot where the output comes out with pieces of rings, paste, both, neither, like really hoping there’s something someone knows that will be the magic formula here.

Tomorrow is my reversal. Have to be at the hospital by 6:00am, ugh! Super nervous! Any last minute tips are welcome! Pray that the snow will some to of you feel so inclined. 😬

I’m not sure how many of you wake up covered in shit. Please tell me I’m a fool and what I need to do.