Does Your Stoma Misbehave During Changes or Showers?

Replies
73
Views
684
warrior
Nov 28, 2024 3:14 am

Some members note their stoma is highly active most times, but the worst time is at the change of appliance or a quick bag - 2-piece - replacement.

Such a difficult situation having an active stoma at change, gotta feel impossible.

I'm curious about your stoma activity at change or showering bagless:

Warrior's freak of Satin is well behaved at change and at bagless showers.

The stoma gods are merciful to some. Sometimes.

Thus the question begs:

Is your stoma behaving or misbehaving?

How long has this misbehaving gone on? - since inception? Or recently a change in diet, meds, health? As cause?

Do you think after a few years, it calms down? Or will it always squirt, spit, flame throw? Forever?

Go time-

 

AlexT
Nov 28, 2024 3:22 am

Normally, mine is silent at bag change or showering with no bag(same thing actually). I’ve gone upwards of an hour with no issues while letting the skin get some fresh air. 

Gray Logo for MeetAnOstoMate

Why Join MeetAnOstoMate?

First off, this is a pretty cool site with 37,519 members who truly understand you.

It's not all about ostomy. We talk about everything.

Many come here for advice or to give advice, others have found good friends, and some have even found love. Most importantly, people here are honest and genuinely care.

🛑 Privacy is very important - we have many features that are only visible to members.

Create an account and you will be amazed by the warmth of this community.

  37,519 members
Ben38
Nov 28, 2024 6:18 am

At times, yes, even after over 30 years, when my stoma's bag-free, it does what it wants when it wants, even if I haven't eaten for hours. After living with a temporary jejunostomy for 18 months and bag changes when the stoma was in full flow, changing an ileostomy when it's active became very easy for me. The best way to describe the output from a jejunostomy is that it's like having food poisoning 24/7; the bag often fills to bursting by the time you've done the Velcro closure up!

Beth22
Nov 28, 2024 6:27 am

Lol, mine has always rolled since day one. And a bag change takes me anywhere from 2-4 hours; the max time so far was 5 hours for a bag change. And I have to change mine every other day. I have tried every time of the day, and tried everything.

infinitycastle52777
Nov 28, 2024 1:49 pm

I think it depends on whether you have an ileostomy or a colostomy. Colostomies tend to be a little more predictable. Whereas ileostomies can be active all the time. I sometimes have issues with an active stoma when showering with the bag off, so I stopped doing that. I have found that in the late afternoon, I can change a bag with little problems. I have an ileostomy. They say eating some marshmallows about a half hour before a change will help slow down your stoma. Some are just wicked, though. LOL

 

How to Manage Emotions with LeeAnne Hayden | Hollister

Play
ron in mich
Nov 28, 2024 2:04 pm

Hi all, it depends on if I eat a snack late in the evening, but mostly quiet and no hassle when changing.

Shamrock
Nov 28, 2024 2:25 pm
Reply to Beth22

Yes, I have a high-output ostomy as well.

I've learned a few tricks though. One is to watch the type and quantity of foods and drinks I consume at certain times of the day, to try to time things for a quiet stoma so I can take a hot shower and get a new bag on because of the lengthy process I need to keep it on.

The problem is when I get a major leak and I just can't wait for a quiet time. I've just resorted to having an upside-down plastic milk crate in the shower while I sit and wait for it to calm down, which could take hours. An endless hot water shower is vital.

 

Shamrock
Nov 28, 2024 2:38 pm

My stoma has been pretty consistent since I've learned certain foods and drinks will cause it to go into diarrhea mode.

Once it was so bad that I called the paramedics to take me to the hospital because I was so dehydrated and dizzy, couldn't drive myself.

They didn't have a bed ready and I needed to dump the cup I was holding against my chest so they told me to use the bathroom in the lobby.

The squirting was so bad and so violent that I covered the walls in spew. I had warned the staff coming into my room to wear face protection. 😆 

Then the hospital has the nerve to tell me they couldn't help me or refer me to someplace else, called the cops on me when I passed out from exhaustion. 

Cops got me into a cab to go back home and I would up driving to a better hospital 2 hours away and they took great care of me.

So they hooked me up with a nutritionist who gave me this all important list of what foods or drinks cause certain problems with people who have Ileostomies.

eefyjig
Nov 28, 2024 2:57 pm

Mine is quiet first thing in the morning about 90% of the time. During the rare times it puts out during a bag change, it’s pretty tame and I can tell when something will come out of it and cover it up. It’s pretty active during the day and I, stupidly, decided to change my bag last night after a dinner of angel hair pasta with pesto sauce, broccoli and garlic and a cup of tea. Haven’t done that in a while and I felt like I was roping a steer!

warrior
Nov 28, 2024 2:59 pm
Reply to eefyjig

Yee haa!

w30bob
Nov 28, 2024 3:00 pm
Reply to Beth22

Wow!  You're a trooper!  

;O)

w30bob
Nov 28, 2024 3:10 pm

No issues with mine.  Being short-gutted I know exactly how long I need to wait until my bowels are completely empty and how long it takes to accumulate enough bile for it to discharge, so changes are easy.  I change on the morning of every 4th day (when my skin is behaving properly) and a barrier change takes about 15 minutes from when I put my supplies on the counter to when I've cleaned up and am ready to roll.  Reading what some on here go thru.........I'm not complaining at all.  But it's a good reminder that every ostomate is different........very different!

Have a great Thanksgiving to all those in the US.  The rest of you have a wonderful day!!

;O)  

Beth22
Nov 28, 2024 6:15 pm
Reply to Shamrock

For me, it doesn't matter what I do or what time of day. I have even woken up at 3 am, 4 am, 5 am, etc., when I say I have literally tried everything and every time of day I have literally tried everything. I had a test and I couldn't eat or drink, so by the time I went to change my bag, it had been 12 hours without food or liquids and it still took me over 2 hours.

Beth22
Nov 28, 2024 6:18 pm
Reply to w30bob

Thank you, Bob. It's a pain in the ass, I'm not gonna lie, lol, and it gets frustrating, but I don't have any other choice, so I suck it up and do what I gotta do 😁

Beth22
Nov 28, 2024 6:26 pm
Reply to Shamrock

And how did you get it all over the walls? My stoma has periods where it will shoot out hard and crazy, but it can't shoot to the wall... Sorry, but this story seems a bit far-fetched; they wouldn't call the cops on you if you were having an emergency situation with your stoma unless you were doing something that warranted them calling the cops.

warrior
Nov 28, 2024 7:00 pm
Reply to Beth22

Our shamrock has a twisted bit of sense of humor, and is quite creative with his demons.

I'm sure his "wall squirt" is in jest. But what a vision, huh?

DeMaGo
Nov 28, 2024 7:48 pm

 


Login to see image

I have an ileo and it goes often; occasionally I get a few times with nothing, but I have a routine unless I get a leak and need to scramble everything together.

Usually I sit on the toilet where toilet paper is used to keep 'poopy' from going anywhere. The sink is right next to me and my supplies are all out. I have yet to get any eruption during measuring! I also check my cut circle for fit and had no eruptions on it yet, but I keep the toilet paper handy just in case. 

I recently saw the stoma nurse who did a change for me and 'poopy' spewed lol. I hadn't eaten since it wasn't breakfast time for me yet and it was bubbly bile. 

I tend to pick change time when it's less active and before eating. 

 

Kirsten
Nov 28, 2024 9:51 pm

My unnamed ileostomy is very unpredictable! Best I've found is having a bagless shower and change in the evening after, um, seeing evidence of the evening meal having more or less passed through. A fully empty stomach seems associated with high pressure liquid output - not quite as bad as warrior described...

Though, the very first time I had a blockage it was because I had eaten and not chewed a mushroom very well. Wanna know how I know? 🤣 After some time massaging, repositioning, and finally a can of coke, I was in the shower and a chunk of mushroom shot out with such force, it actually moved the shower curtain and landed outside the tub! Fully intact quarter of a button mushroom. I swear it looked as if I'd swallowed it whole. 

Shamrock
Nov 28, 2024 10:47 pm
Reply to Beth22

"...it had been 12 hours without food or liquids and it still took me over 2 hours."

 

Okay, I've learned that if you fast for a while, like overnight, in the morning just plain bile will fill your bag and won't stop until (duh) you eat a little something.

So applesauce, after a fast, is undisputedly the best method to get a stoma like this to behave for a while.

It does take a while to take effect, so keep draining your bag of bile and watching for the slowdown to occur, then get to work, take a shower, and blow dry the area well before doing your bag thing.

I think the body produces bile, even when there is no food available in the system, to keep the gut bacteria alive.

You keep it busy for a while and that gives time for a change.

TerryLT
Nov 28, 2024 10:49 pm

My stoma (ileostomy) is pretty active most of the time, night and day, and certainly does its share of spitting and spewing, but I'm pretty good at timing my change for an inactive period. The timing is pretty critical though, and it's a short window. It's always between lunch and dinner, when breakfast has been digested and eliminated. I shower after removing my old pouch, and will sometimes have a small amount of output while in the shower, which is fine; it just goes down the drain. I apply some pressure around my stoma while in the shower, which dispels any that might be about to come out, then once I'm out of the shower, everything has already been set up, and my change only takes maybe ten minutes. Not that I haven't had mishaps with timing or just the unpredictability of ileostomies, but most of the time I'm good, fingers crossed!

Terry

Shamrock
Nov 28, 2024 11:05 pm
Reply to Beth22

Well, mine certainly did shoot all over the walls.

It was an engineered food drink called Solent (like the movie) that was responsible, and I was drinking a lot of it because I was too tired and weak to move.

So the body just went into full-on super diarrhea mode and periods of high volume discharge like a cannon was going off.

The hospital refused to help me further because likely they were out of ostomy supplies to patch me up, and I just covered their bathroom with spew, on everything and pools of it on the floor even.

So yes, I passed out and they woke me with a cop there to escort me out of the hospital.

What was especially bad is they couldn't recommend a hospital that could help me as the spewing just wouldn't stop. They didn't even arrange a medical transport or ambulance to take me to the other hospital.

Luckily, a friend earlier recommended another hospital 2 hours away, and they indeed took great care of me. But I was spewing into a glass cup and pouring it out the window the whole way up. I got into the ER with a suction machine and I held there all night and still was going on until the morning.

Worst case of diarrhea I've ever seen.

Shamrock
Nov 28, 2024 11:25 pm

My recommendation is, for anyone with an ileostomy, to create some sort of alternative drainage system that they could deploy in case of an emergency for a runaway diarrhea situation where adhesive adhesion isn't going to occur.

Some use Dixie cups glued onto the wafer section of a two-piece with a belt and just remain belly side down over a hole in a couch or pillows or something to allow gravity to drain most of the spew away instead of it rolling down the body and causing burn wounds from the digestive enzymes.

My stoma is oval and near flush, so I'm trying to find something safe, like a polished glass tube which I can connect to a wafer and a tube to a pot on the floor and just sleep waiting it out. Lay on it to give it pressure around the stoma to prevent leaks.

 

Fitzy
Nov 28, 2024 11:32 pm

During a change mine is quiet, but when I least expect it, it squirts, runs, and makes a mess... Urg

Shamrock
Nov 28, 2024 11:37 pm
Reply to warrior

No jest.

Actually occurred.

Drink Solent shakes for a few days and see what happens. 😆 

Fitzy
Nov 28, 2024 11:39 pm

Hello Warrior,

I did answer your question and now I'd like to thank you for suggesting to me M9. I tried to get cheap and I went through my ostomy supply company and I received it yesterday. Only thing, it is not M9 it's a bottle of ostomy deodorant. It didn't have any odor so I guess I will order it from Amazon. Thanks for letting me know there is a product.

SusanT
Nov 28, 2024 11:39 pm

Lol, I love this topic. 

My colostomy has a habit of erupting like a volcano. When my output is watery, it can fill a bag in minutes. I have to move fast to prevent a follow-up eruption from bursting the bag or displacing the appliance (I wear flange extenders to help prevent a huge mess). I still have most of my colon (rectal cancer did not invade the colon so only a small part removed). I'm grateful but it makes predicting timing difficult and controlling output nearly impossible.  

OTOH, my urostomy is very predictable... it is always going. All night, all day, it's like the energizer bunny. During appliance changes it shoots urine out a good 4 to 6 inches. I stand in front of a sink and try to catch it that way. My ostomy nurse wants me to catch it in a bag clipped to my waist... but I've not been very successful with that. 

I don't shower without my bags, never have. I can't imagine both stomas behaving long enough to shower and get 2 new appliances on. That sounds like a mess waiting to happen. 

But I'm loving reading others stories, I feel much less alone in the struggle. 

Fitzy
Nov 28, 2024 11:53 pm
Reply to Kirsten

Lol, that's funny. I can relate to recognizing food shooting out. I learned after a couple of bowel obstructions to cut my food up small and chew very well.

I've had mushrooms and broccoli shoot out. I can relate, Kirsten.

warrior
Nov 29, 2024 1:59 am
Reply to Fitzy

You are welcome. Always ask if you have questions or concerns.

M9 is the smell killer for me.

Beachboy
Nov 29, 2024 6:38 am
Reply to Kirsten

An atomic blast. Different kind of mushroom cloud though...

Beachboy
Nov 29, 2024 6:49 am

My colostomy is well-behaved. Very rarely does the ruby beast bellow and blow while I'm "naked" in the shower or putting on a new wafer. I let my stoma breathe for an hour during wafer change. I'm kinda jealous Shamrock can blast walls. There you have it... stoma envy.