Does Your Stoma Misbehave During Changes or Showers?

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675
Smnard
Nov 29, 2024 6:51 am

Always active, always a hot mess. I told my husband we need to write a letter to the company that made our floor mat to thank them for never staining. I now use a puppy pad to stand on and another one tucked in my underwear to catch the mess that will most definitely happen. It will blast out in the shower. It usually gives me time to dry off, then begins blasting away when I need to get it covered and bagged. I have tried all times of the day; it doesn't matter for me. When I feel confident on a break from blasting, I need to move quickly. Sometimes it takes me 2 hours to get it.

Queenie
Nov 29, 2024 10:52 am
Reply to Shamrock

Wow!!! I hope things are better for you now.

 

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Beth22
Nov 29, 2024 2:43 pm

Smnard, get some red solo cups and put them under your stoma when it's rolling. That's what I have to do. I had to get creative; I couldn't sit there rolling like crazy and trying to hold gauze and tissue under my stoma. A red solo cup is a lifesaver when changing.

Shamrock
Nov 29, 2024 4:55 pm
Reply to Beachboy

I often jokingly threaten people if the piss me off enough, I'll rip off my otosmy bag and fling it at them then engage them close up and let the stoma spew it's crap all in their face and eyes. 😆 

Shamrock
Nov 29, 2024 4:58 pm
Reply to Queenie

Yes, much better once I've learned what foods or drinks not to consume.

The list is here if you need it.

 

[b]Signs of a clogged stoma.[/b]

No output or only watery output under pressure for a few hours after eating could be caused by a covered stoma due to improper application of an appliance, typically when the hole is cut too small or too much paste is used. It could also be caused by eating hard food. Seek treatment in an emergency room, remove the appliance if necessary, and wait. If clogged, severe pain will eventually appear, which will hopefully clear itself. If not, a trip to surgery would be necessary. Unfortunately, very high and frequent output will ensue after clearing for quite some time, which will likely make putting on a replacement appliance difficult. Use stool-thickening tactics (below). If going to an ER, bring your own ostomy gear and a change of clothes as the hospital likely doesn't carry or doesn't know how.

 

[b]What is "pancaking?"[/b]

Pancaking occurs when a vacuum in the bag (likely due to a clogged filter) or super thick stool blocks stool from depositing to the bottom of the bag. This can force the bag off and cause leaks. Control what one eats and by mixing and consuming stool-thickening and stool-softening foods at the same time to get a balance.

 

[b]What is "ballooning?"[/b]

Ballooning occurs when foods eaten produce too much gas and the filter gets clogged (likely due to lying down), thus forcing the bag off and causing leaks.

These two conditions can cause premature bag replacement and leaks which burn the skin. It's better to replace the appliance if there is any continuous stinging pain; don't just live with it. Keep an eye on your ostomy supply and have ample reserves.

I've found that caffeine, in coffee, tea, and even chocolate, causes diarrhea and can assist in controlling flow so stool is more liquid. However, coffee makes output very acidic, making burns worse. Dried Chinese Crispy Noodles, Cheerios, or applesauce (peeled apples) are the exact opposite, a stool-thickening food. By mixing these with other foods, one can manipulate their stool output and counter the issues above. Also, the severe thickening helps in cases where one has severe diarrhea and is unable to reattach a new bag due to high flow.

[b]Eating Guide[/b]

Partially copied from my nutritionist's guide. Ileostomy Nutrition Therapy from the Academy of Nutrition and Dietetics. (This handout may be duplicated for client education.)

My recommendation is to see a nutritionist for the full guide as not all can be pasted here.

I've added my own observations to further clarify.

Chew all foods well to the consistency of paste.

[b]Foods That May Cause Blockage (very bad, avoid!)[/b]

Apples, unpeeled (unpeeled and applesauce are excellent thickeners, don't eat the core, chew well)

Bean sprouts

Cabbage, raw

Casing on sausage (inside fine if no tough parts, avoid swallowing if a chunk is felt)

Celery (avoid)

Chinese vegetables (stir-fried crunchy, too hard, need soft veggies with no skins)

Coconut

Coleslaw

Corn (grits also, corn anything doesn't seem to dissolve in the stomach)

Cucumbers (skins bad, inside chewed up good seems okay, no seeds)

Dried fruit, raisins

Grapes

Green peppers (red, yellow also) pureed or very very small seems okay in small amounts

Mushrooms (doesn't dissolve in the stomach) pureed or very very small seems okay in small amounts

Nuts (totally avoid)

Peas (mushy interior okay, like pea soup, skins a problem)

Pickles (skins a problem, inside if chewed up good seems okay, seeds not)

Pineapple (liquid okay, mushy parts fine, hard parts not, tricky)

Popcorn (totally avoid)

Relishes and olives

Salad greens (diarrhea nightmare too)

Seeds and nuts (avoid)

Spinach (doesn't digest, pureed perhaps)

Tough, fibrous meats (for example, steak on grill, well done, tough parts especially)

Vegetable and fruit skins (any avoid)

Whole grains (no grits, oatmeal seems to be okay, Cheerios is an excellent thickener)

[b]Foods That May Cause Gas or Odor[/b]

Alcohol

Apples

Asparagus (stink)

Bananas

Beer

Broccoli (clog hazard)

Brussels sprouts (clog hazard)

Cabbage (clog hazard)

Carbonated beverages

Cauliflower

Cheese, some types

Corn (clog hazard)

Cucumber

Dairy products

Dried beans and peas (clog hazard)

Eggs (don't digest in the stomach)

Fatty foods

Fish (cooked salmon in small portions may not, nor stink)

Grapes

Green pepper (red and yellow also, clog hazard)

Melons

Onions (clog hazard)

Peanuts (clog hazard)

Prunes

Radishes

Turnips

Soda and sipping using straws (drink from glass instead)

Seafood (oh God, does it stink!)

If you're having pancaking issues, a small amount of something above (like having a soda during a meal) could introduce some air into your diet and thus into the bag. Also, by avoiding too many thickening foods by themselves, which often contribute to pancaking.

[b]Foods That May Help Relieve Gas and Odor[/b]

Buttermilk

Cranberry juice

Parsley

Yogurt with active cultures (Greek yogurt)

[b]Foods That May Cause Diarrhea (looser or more frequent stool)[/b]

Alcohol (including beer)

Apricots (and stone fruits)

Beans, baked or legumes

Bran

Broccoli

Brussels sprouts

Cabbage

Caffeinated drinks (especially hot)

Chocolate

Corn (in my experience, corn anything doesn't digest in the stomach, just passed through and out, kernels/popcorn will clog)

Fried meats, fish, poultry (KFC, supermarket rotisserie chicken very bad, anything soaked in brine)

Fruit juice: apple, grape, orange (small amount okay)

Fruit: fresh, canned, or dried (small amount okay)

Glucose-free foods containing mannitol or sorbitol

Gum, sugar-free

High-fat foods

High-sugar foods

High-salt foods (KFC, supermarket rotisserie chicken)

Highly seasoned foods (blackened)

Licorice

Milk and dairy foods (small amounts okay)

Nuts or seeds (bad, clog hazard)

Peaches (stone fruit, one rarely okay)

Peas

Plums (stone fruit)

Prune juice or prunes

Soup

Spicy foods

Sugar-free substitutes

Tomatoes

Turnip greens/green leafy vegetables, raw

Wheat/whole grains

Wine

Rice (1/4 cup mixed in food okay), refried beans (1/4 cup okay), pasta (one cup max).

Any foods soaked in brine or fried (rotisserie chicken, Kentucky Fried Chicken, etc.)

[b]Foods That May Help Thicken Stool[/b]

Applesauce (unpeeled apples, no cores)

Bananas

Barley (when OK to have fiber)

Cheese (cheese food may be a clog problem, use real cheese)

Dried Chinese Crispy Noodles (severe thickening, mix with other food that causes diarrhea)

Marshmallows

Oatmeal (when OK to have fiber)

Pasta (sauces may increase symptoms) (in my experience, more than a cup of pasta causes diarrhea)

Peanut butter, creamy only, nuts clog (makes skin oily)

Potatoes, no skin (skin clogs, more than a cup causes diarrhea)

Pretzels (salty may cause more flow water consumption)

Metamucil, mix or crackers (mix in a cup of water and drink before it gels up)

I'm adding to this list based on experience.

 

Words of Encouragement from Ostomy Advocates I Hollister

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eefyjig
Nov 29, 2024 7:50 pm
Reply to warrior

 


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eefyjig
Nov 29, 2024 7:54 pm
Reply to Shamrock

We can dream, can't we?! 🤣

warrior
Nov 29, 2024 8:59 pm
Reply to eefyjig

A redhead... no less... That's hot!

Beth22
Nov 29, 2024 9:18 pm
Reply to Shamrock

It wasn't the next morning when I had changed it; it was in the late afternoon. And it wasn't just my bike—I've had that plenty of times—it was full-blown, rolling like a river, as if I had drunk a ton of water. And with me, as I said before, I have tried everything and every time of day. Nothing works. Plus, my stoma likes the air. On more than one occasion, it has been silent, and as soon as it hit the air—boom, lol. So, I just get out my red solo cup, hold it under her, and wait until I can get an opening.

Luketheduke
Nov 30, 2024 12:09 am

Every time I change my bag, I joke about going into battle because it is. The damn thing is a loaded shotgun/squirt-gun/grenade launcher. I pull my bag off, and it's go time. Never come out slow.

 

I use a two-piece. Coloplast 2 piece Sensura Mio. I have the high output bags, like 1200ml, and I empty 10-15 a day.

 

I change my bag either with a leak or by day 3. Luckily, the leaks have been minimal. However, due to the nature of the beast (I think I've dubbed my stoma its new name, The Beast. My temp ileostomy back in '13 was named Ripley after "Aliens" Ripley. 🤣 Humor helps, y'all), anyway, nature of the beast. I change my bag in the worst possible way. And hell, I only have maybe 5 or 6 years left before I can't change it that way anymore.

So my dumbass does it in the shower. Take the bag off. Shower. Wash up. Then bend 90 at the waist so the stoma is pointing in the tub (shower tub). Put my right knee up on the tub. Stand on my left leg and go to town. My back and knees only have a few more years left. So I'll hopefully figure something out differently. Take into account, it's a fire-hose once the bag comes off. Hence the pointing it at the tub. Have tried lying down and sitting and standing against the sink. "The Beast" lives up to its name.

 

warrior
Nov 30, 2024 12:22 am
Reply to Luketheduke

Ahh, the alien spud... spews indeed.

 

Luketheduke
Nov 30, 2024 12:30 am
Reply to warrior

🤣😂🤣

Queenie
Nov 30, 2024 10:03 am
Reply to Luketheduke

Sorry, Luke. It sounds like a strong minded life form, maybe a bit like its host! You write well.

warrior
Nov 30, 2024 12:56 pm
Reply to Luketheduke

Someone once said... humor is good medicine. Ditto that.

I was reading your in-shower bag change routine. Your comment about knees with a limited time of use surprises me. You're 36 years old, and are you saying arthritis is the culprit for having "a few years left" in them?

I have a solution to your issue. Saving knees and back...

Remove the bag after you get all cleaned up. That's part 1.

Do you have an old belt lying around?

Have you seen these painters' cups? It's got a neat handle, and I guess it holds about a quart of paint when you do touch-up painting.

They are at Home Depot or Lowe's.

So wrap the belt below the alien spud, and place the cup handle snug between the belt and skin below the stoma. Standing straight, you can lift the cup directly in line with your stoma output if it spews.

The thought of bagless showers made me freak out. Just a gross idea until I thought, "Catch it. Drain later."

Ha ha, like when you change your engine oil. A drain pan... in this case, a drain cup.

For me, this is a game changer.

Of course, my alien spud behaves. But allowing the cup "right there" allows me to dry off properly and walk around, giving the skin around the stoma ahhh time. Also known as air time to dry.

 

 

warrior
Nov 30, 2024 1:02 pm
Reply to Shamrock

Flinging your bag at those people pissing you off is kinda ape-ish.

I like it. 🦧

Queenie
Nov 30, 2024 5:05 pm
Reply to Shamrock

Thanks so so much, Shamrock! I'm still finding my way around this site and have only just found this, it's a treasure chest of info. I've discovered by trial and error that cherry tomatoes, green grapes and baby lettuce move mountains for me.

I haven't yet worked out what bungs me up. I grew up in Zimbabwe, and corn porridge (and for the more posh of us, polenta) was a local staple food. But it converts me into a weapon of mass destruction! I could wipe out a small country! My body has installed other annoying problems too, caffeine and alcohol ensure an exciting ambulance trip and cardiac defib, which is not as enchanting as it may sound. But it's very annoying as some of my best friends are in the wine industry in South Africa, and I have to sit with a prune face like a judgy old maid at get-togethers!! I'm like a beggar, sniffing all their wines.

Thanks so much once again, this is really great. I'm a retired clinical pharmacist, so if I can ever repay the favour and give you info on any medications, please let me know. I'm really into drugs, but in the most boring way possible. For instance, did you know that moving the fluoride atom to a different carbon atom in cortisone made the resulting molecule much less absorbable by the skin? I know, hey, riveting!!

Luketheduke
Nov 30, 2024 5:22 pm
Reply to Queenie

Thanks, Queenie. They absolutely do have a mind of their own! I mean, don't get me wrong. I'd be pissed off too if I was stripped down and sprayed with water, then rubbed with chemicals and left out to dry, then just to be manhandled back into a bag... 🤔 (levels with stoma) "Listen, beast, buddy. I'm sorry. I had to deal with all of that as a baby too. Well, minus the chemicals and I hope a bag... I think... but I got over it, homie. You should too!"

 

I'll report back when I do my bag. See if he listened. 😄

Luketheduke
Nov 30, 2024 5:34 pm
Reply to warrior

Warrior, you mean like paint mixing cups? If so, I have a few. I can give it shot! And by belt, you're referring to my bag belt?

 

Also to touch base on my knees and backs. Yep only 36 years young but played baseball for 15 years as catcher. Little league and high-school. Before knee-savers were cheap-ish. So that didn't help. Then I was a master tech on various vehicle brands for quite a bit. Then transitioned to working in the nuclear and hydroelectric generation field. Millwright. My back and neck finally got messed up on my way back from a jobsite. Work truck went off the road with me in back and hit a farmhouse corner. Bunch of tools, boxes and jobboxes decided to visit me in the back seat from the truck bed. 😂😅😂    But yep! Only 36 😂🤣😂

warrior
Nov 30, 2024 5:49 pm
Reply to Luketheduke

Paint mixing cups? Nope. This is a painter's cup. It looks like a pitcher. You know those water pitchers you get in hospitals? That's what I am using now, but I saw these painters' pitchers. They also have a magnet to hold your brush. I do believe they are for painting small areas for touch-up instead of using a roller or a brush from a gallon of paint.

Re: belt. Nope. Do you have an old pants belt laying around that you haven't used in years? Just a regular pants belt will do. It will get wet but will dry off. Standard belt. Nothing fancy.

You got beat up by a toolbox. 😲 Introducing your work truck to farmhouse corner. Ouch.

Now why did you do that? 😉 Blame it on a squirrel.

You have been around the block in some careers. No regrets, I guess? Pain sucks.

Just got a refill of gummies.

New dose. Ugh. 5mg THC, 5mg CBD. They told me to cut them in half, but I want to see how this dose affects me and Alien Spud. Maybe I can catch up on some needed sleep.

TTYL

 

B@tLady
Nov 30, 2024 6:21 pm

Just "celebrated" my one year StomaVersary. If there are calm days ahead for Vesuvius, I'll be ready and willing. Meanwhile, on scheduled change days, I have a very early coffee, no breakfast. I used to get very stressed just thinking about what might happen being stripped of all coverings, though I actually had only one occurrence. Recently, a half hour before shower time, I started taking my morning meds PLUS one Imodium tab and five marshmallows. I've avoided all spewing events and have the extra benefit of slowing bowel activity so that my late breakfast sits around a while and more nutrients can be absorbed. A little chemistry makes the world go 'round! 

Luketheduke
Nov 30, 2024 6:47 pm
Reply to B@tLady

B@tLady, I'm absolutely in love with your stoma's name! Vesuvius! That had me rolling!

But it seems like the coffee breakfast is a common thing! Do that as well! I like everyone mentioning marshmallows to help staunch output! Going to have to try that!

Imodium gives me the opposite effect. It makes the beast go super Saiyan and Kamehameha output. 🤣 I'm going to have to experiment with the marshmallows and Imodium though 😈. Perhaps that's the ticket!

Luketheduke
Nov 30, 2024 6:56 pm
Reply to warrior

Thanks, Warrior! I'm going to check out Lowe's and see what I can find! Heck, I'm even going to check the acquired supplies from hospital stays! Might have one of those pink water pitchers 🤔🤔 Heck, what about a urinal bottle? Obviously, watch the sharp plastic on it.

 

I hope the gummies do you well, Warrior! Sleep is wonderful when it's allowed! And I hope it gets you a good shut-eye!

I wish I was driving that day... I would have taken a safer route and vehicle. But I was a lowly laborer riding passenger in a company truck. Lots of what-ifs for that day. But I made a decision in the interest of others. And it was a mistake. Lesson learned and moved on. Can't dwell.

Learning as I go
Dec 01, 2024 12:02 pm
Reply to Beachboy

An atomic blast!

Learning as I go
Dec 01, 2024 12:04 pm

Wait until just before a meal time (or first thing in the morning) and try eating a few marshmallows about 30 minutes before a change. But don't bend over to get something out of a drawer (ask my shoes how I know).

rlevineia
Dec 01, 2024 4:32 pm

Quiet 80% of the time. My "little buddy" hates when I swallow air. It makes him bark (squirt). Too much liquid in my pouch is a warning of an upcoming mess. The night before a change, I eat potatoes, rice, pasta, or pretzels. When I wake up one hour before the change, I eat 3 marshmallows (learned this at MaO). A wet change uses 8-10 wipes. A post-marshmallow change uses 1+ wipe.

rlevineia
Dec 01, 2024 4:36 pm
Reply to infinitycastle52777

Ditto. I eat 3 marshmallows 45-1 hr before change. Last meal before change, I eat potatoes (best), rice, pasta, or pretzels. Any output is thick & small.

rlevineia
Dec 01, 2024 4:44 pm
Reply to eefyjig

Bronco buster in NYC? Did you ever meet McCloud? The best time to change is a long time after eating. I do it before breakfast. What goes in must come out. Broccoli (my fav) causes gas. I cook it to mush, fewer issues. Tea with caffeine? Stimulates output - Kaboom!

Andrew82
Dec 01, 2024 7:10 pm

If it does, it's my fault. I usually time my changes for before I eat so there's little to no activity. But sometimes... every once in a while, lol.

warrior
Dec 01, 2024 8:10 pm
Reply to Beachboy

Indeed, I heard he's painting houses these days. Discounts are given for green, brown, and black colors. 😲👍

Queenie
Dec 01, 2024 9:39 pm
Reply to Luketheduke

Ouch.