Living with an Ileostomy: Seeking Advice and Sharing Experiences

Hello,

I have only been on this site for about two weeks. Mainly, I've been reading everyone else's posts to feel that feeling you get when you find out you're not alone.

It seems to me that those who have an ileostomy are happy with it or at least content with it.

I have had Crohn's since I was born, I would say. The only reason I say this is that I was a colicky baby. Anyway, I started with a rectovaginal fistula and I was given a temporary colostomy. Well, it wound up becoming permanent. I was able to deal with it. Some nightmare stories, but as we say, “at least I'm alive.” I had that for 25 years. 14 surgeries in all. 5 years ago, I was told they were going to remove all my large intestines, rectum, anus, sphincter. I now have an ileostomy.
After all that, here is my question: How is everyone okay with having an ileostomy? Maybe someone can give me tips. I am afraid to go out socially, even though at times I've had no other choice. My stools are always liquid, not to mention some gas. The odor is probably the worst for me. If there wasn't the odor, maybe I would go into a public bathroom.
We are retired, supposed to be enjoying a wonderful lifetime experience. I feel bad for my husband even though he goes through it with me; he should be enjoying himself.

Thanksgiving is next week and the family is large and a hall is rented. Fear is here.

My nephew's wedding is during the Christmas holidays. Here I go again. I wish there was a way to stop the floodgates. My husband told me I'm crazy, but it crossed my mind that maybe I could use a tampon.

Anyway, I'd appreciate any help.

 

M9 for the odor.

Bulk up with Metamucil.

I am an ileo 8 yrs. Kenn butt recent 1 yr.

Nothing should stop you. Go. Get. Do something.

How does your bag hang? Vertical? Horizontal? Do you have a belt and wrap for it?

Hi Fitzy, I have one also.  For me it is not what I ever envisioned for my life, but I recognize some things are beyond my control.  As a result, I have made the decision not to let Crohn's/Cancer steal anything from my life that I can control.  Since being discharged from the hospital I have made up my mind to be as active as possible. The first year had some challenges, but forcing myself to quickly return to work and the activities I enjoy has paid great dividends. I acknowledge that the fear of embarrassment is real but learning to have contingency plans and maintaining a positive attitude with the ability to laugh things off is essential.  Embarrassing moments can happen to anyone but rarely are those the moments remembered in the end.  I don't let the fear of embarrassment leave me with regrets that I allow my condition to restrict me from getting out in public and enjoying life.   Neither should you.  Hope you have a great holiday season.   Littlefish. 

I'm okay with my ileostomy although it's near flush and in a slight belly fold, would have been better if it was sticking out more, about 3/4".

Your stools are almost always liquid, which is good as long as it's not in high volume. Chunky or clump like is bad. Chunks can clog and clumps can cause pancaking around the stoma and force off the wafer and leak.

You shouldn't be afraid to go out socially, just use a baggier top and control your diet a bit that your not eating too much of items that produce a lot of liquid flow or gas. I limit myself to a half a cup of rice, potatoes or wheat as those seem to make me runny. No alcohol or tons of other things, I'll provide a list for you to copy. Note that the body often flushes extra food out of the body if it has sufficient blood sugar levels, so eating too much also can cause runny output and frequent bathroom visits.

And if you don't want to be running to the bathroom all night, stop eating after 2 pm. Focus your big meal at lunch and only small snacks to keep off hunger after that. Turkey dinner is often an excuse to get stuffed, but a lot, stuffing, potatoes, rice, bread etc even too much turkey, will have you doing high volume bathroom runs. 😆 

Of course alcohol, often consumed as well during the holidays, can cause runaway dirrarea and that makes putting a new bag on especially hard. You just have to sit in the shower and wait until Mr. Stoma stops spewing. 🥴

Odor is easy to control, understand that it's digestive enzymes from your intestines that are now in the bag and causing all the stink. They are easy to kill. Simply dump, then put two drops of antibacterial dish soap into the bottom of the bag followed by about 1/4 of a regular water bottle. Wash gently and don't squeeze, dump. Then do it again with just water, seal up and go lay on your back. Get the solution up around the top of your bag to get that area and dump. If you need to then rinse one more time. 

Usually the soap residue remaining will take care of most of the future odor if you do this routine often as possible. However some odors are caused by diet choices, especially most seafood and asparagus. List at the end of this post.

Don't stick anything into the stoma, or wipe with anything. Try to dab only, it's extremely fragile and will bleed causing problems putting a new bag on.

 

[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 by improper application of an appliance, typically hole is cut too small or too much paste. Also could be caused by eating hard food. Seek treatment by an emergency room, remove appliance if necessary and wait. If clogged a severe pain will eventually appear which hopefully will 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 making putting on a replacement appliance difficult. Use stool thickening tactics (below). If going to an ER, bring your own otosmy gear and a change of clothes as hospital likely doesn't carry or doesn't know how.

 

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

 

Pancaking occurs when a vacuum in the bag (likely do to a clogged filter) or super thick stool blocks stool from depositing to the bottom of the bag. Thus can force bag off and cause leaks. Controlling 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 laying down) and thus forces bag off and causes 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 otosmy 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 unable to reattach a new bag due to high flow.

 

 

[b]Eating Guide

[/b]

 

Partially copied from my nutritionists 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 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 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 stomach)

Fatty foods

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

Grapes

Green pepper (red and yellow also, clog hazzard)

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 your 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 much 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 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)

High 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 in 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 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 (clog hazard, even grits, doesn't digest)

Fried meats, fish poultry

Fruit juice: apple, grape,

orange

Fruit: fresh, canned, or

dried

Glucose-free foods

containing mannitol or

sorbitol

Gum, sugar free

High-fat foods

High-sugar foods

High salty foods

Licorice

Milk and dairy foods

Nuts or seeds

Peaches (stone fruit)

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

Soylent nutritional drink 

 

 

[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 cup of water and drink before it gells up)

 

I'm adding to this list based upon experience.

 

 

My suggestion, if you are not already doing so, is fiber in powder form (not pill) foods, etc. My output was always just watery until I took heed of what my doctor had said… Metamucil is frequently mentioned here, but I buy psyllium fiber at Costco or order it online. I put 2 teaspoons in a smoothie in the morning after I have had my coffee. It has really made a huge difference for me. In addition, I frequently mention here that I put a few drops of baby oil in my bag. The fiber will solidify your output, and it exits the bag as if it is on a Teflon pan. Caution though, depending on the outspout of your bag, some say oil leaks. I use a clamp as opposed to the Velcro products and have never had an issue. This past week I have been test driving a two-piece system with a Velcro closure and sure enough, it somehow can sneak through that Velcro… not a total leak but some that will most likely have me returning to my old one-piece with a clamp. As far as gas and odor - it is usually related to what we eat and drink. jb

Staying Hydrated with an Ostomy with LeeAnne Hayden | Hollister

Hi, my bag is vertical and sticks to my stomach. There's a clip to release the drainage.

Warrior, what is M9 for the odor?

Thank you.

As suggested, M9 drops for odor control. And as for liquid output, it is easier to empty than if you had really thick output, I think. But if you want to thicken your output, there are things you can put in your bag to make everything gel together. Then you have really thick output that might be hard to empty out.

Thank you for your response. I can only hope I can get to the level of acceptance that you are

M9 is a commercial product designed for ostomy bags to eliminate odor and cause contents to slide easier to the bottom of the bag.

You can choose to pay for it but it starts getting expensive. Antibacterial dish soap works cheaply and effectively, doubles to wash out your bag also. M9 doesn't do that, it's just a lubricant and odor control.

Thing is don't use anymore than two tiny drops of the antibacterial dish soap and rinse twice with plain water per dump sitting. The dish soap can be irritating to the stoma in higher amounts or not rinsed out enough. It's very sensitive.

Hello,

I have a colostomy, been 2 years since my surgery.

At first, I was very self-conscious in public. My stoma sticks out quite a bit, and I developed a mild parastomal hernia. The result: a large bulge under my shirt. No way to camouflage it.

What I've learned: No one cares. Meeting people, I would always point at my bulge and tell them it's a colostomy. Most everyone said, "didn't really notice." So I've stopped drawing attention to it. And now "I" don't notice it anymore.

Mine makes noises... sometimes loudly. At church, at the dentist, out to dinner. I just pat the bulge and say, "shush you." Everyone chuckles. It's no big deal.

Eating a couple of marshmallows will slow output.

Public restrooms will always have odor and everyone gets gas. All part of being human. For speed, I sometimes just change bags. I use a 2-piece Hollister system. I can switch bags in less than a minute. I always have a spare disposal bag and spare pouch folded up in a pocket. I toss the disposal bag in the trash. Sometimes you gotta do what you gotta do.

Walmart and Amazon have Lysol On-the-Go, Travel Size Disinfectant Spray, Crisp Linen scent, 1.5 oz. You can carry this in your purse. Good for "on the go" bathroom use. I always pack a few when I travel.

Hollister makes M9 deodorizer drops. You put several drops in the bag. Keeps odors down.

If you don't already, consider wearing a support belt to hold the bag and wafer securely against your skin while in public places. I use Nu-Hope belts.

Good luck, and let us know how everything went.

Infinity explained its odor control. I don't know what M9 actually means or what the abbreviation is. But it's a bit expensive. Works for many. Comes in a small eye drop bottle, convenient.

Others have suggested home remedies, a lot cheaper like baking powder; even mints were added, like Tic Tacs.

Yeah, that odor would remove paint if applied to a wall. Ha ha, and what you eat will affect the odor.

M9 is handy, convenient, no mess. Google it to find the cheapest price or go cheap with mints. You will find what works quickly.

Thank you, I would like that. The liquid output when I open the clip can do one of two things. One, it can pour out; two, it can pour into the toilet water and splatter over me, the toilet, and the wall I'm next to.

That's hilarious, lol. I don't care how $ it is if it works. Tic tacs ha.

Thank you, this is a wonderful site.

Backsplash! Ugh. Ever think about dumping into a cup... or what I use, a painter's cup? Then control the emptying into the toilet. Neat, clean, safe. If you flush while dumping, you may eliminate the smell. It's been suggested by a few.

Others sit on the toilet reversed to dump... No thanks.

You can control liquid output by holding the bag end up some while sitting and keeping it folded while releasing the clip or Velcro, then slowly lowering it while gently unfolding it and allowing it to slowly pour out instead of just dumping out all at once causing a splash situation.

Everybody eventually learns how to dump without causing a mess, it just takes time.

You should be dumping your bag when it's 1/3 filled.

If you notice a pancaking issue forming then you use the antibacterial dish soap and water to gently flush around the stoma to loosen it.

Thank you so much. My peers have told me about this M9, and I also like those small bottles of deodorant sprays you mentioned.

As for my bag, it sticks to my stomach with a paper tape around that. The reason it sticks so well is that it attaches to my body heat. I have never had it fall off or the odor leak from the bag; it's the clip to release that's my problem. It can, but rarely, pop off, or if I'm too full, it will pop the clip. God bless all of you, and thank you.

If you're having clip issues, which is archaic in my opinion, you should look at using Coloplast's pouches as they have the best Velcro system in my opinion.

They have two Velcro tabs that, after a rolled-up end, swing over and secure.

This way the Velcro is completely out of the way of any stoma output. And being that it's thin, it never catches on anything like a clip does.

Wow! I have never thought of that in the 30 years of my experience. I always stand in front like a man pees to empty my bag. I feel so foolish. In one post, I'm learning so much information, Google info too. Thank you, Shamrock.

Keep asking questions and you'll likely get the best answers here. 😊

If for some reason sitting on the toilet is an issue for you, you could use a piece of plastic pipe, cut to the right height, wide enough so it stands on its own, placed into the toilet and used to dump into. You'll have to rinse it out of course. A wash outside once in awhile. 😊 

"Some sit in the toilet reversed..."

Oh I tried that number a few times, until I missed once and fell on my butt.. 😆 

Threw my back out and I was bedridden for a week.

Doing the whole trying to control the odor thing by getting that mess underwater as quickly as possible. 😆 

Major newbie fail. God it was only several months ago. Learned so much since then. 

Now the anti bacterial dish soap is my go-to method. No more smell nearly all the time.

Hi Fitzy,  I started with a colostomy as well, but only for a year, and since then, I've lived with an ileostomy.  I haven't found a whole lot of difference really, except for having to empty more often.  You have gotten lots of good advice here that I don't need to repeat, but I will just say that there should be no reason for you to limit yourself or avoid social occasions.  I don't.  I have never had an issue with smell, and I'm wondering if it's just smell when emptying you are talking about, or something else.  If you are smelling your ostomy, something is wrong, not getting a good enough seal or something.  How many days of wear time do you get?  I get a a full week between changes.  As far as smell when emptying, the drops will help, or just do what I do, flush the toilet the second your output hits the water, then flush again after cleaning the end of the pouch.  I am happy with my ileo and it's made my life much better, so no complaints.  When I go out, I always have a ziploc bag with baby wipes in my purse, or jacket pocket, in case of having to empty in a public washroom.  Not my favourite thing to do, but better than being stuck at home when there are things I want or need to do.  

Terry

Terry

Don't let having a pouch define who you are. Go out and enjoy. Make every day count!!! 🌈🌈🌈

Shamrock you are awesome. Thank you for all this information. Also thank you for taking the time. I am definitely going to listen to what you say

Especially because at least once a year I wind up in the emergency room getting admitted for a bad blockage. I really do need to watch what I eat.

Aw Riva, you are a sweetheart. Thank you for the pep talk

This stick you mention? The bag sticking to the stomach?

I call this idea the Texas 2 shirt.

Wear a T-shirt, cut a hole just round enough to fit over your flange or mounting plate. The T-shirt will act as an insulator, protecting your skin from bag irritation.

Then you can wear another shirt over this.

Just be comfortable.

I did this years ago because I wanted to tuck my shirt in. As a newbie and clueless to what's out there, I didn't know anything else to do. 🤦‍♂️

I now wear my bag horizontally. I feel more confident going horizontal than vertical.

No more hole cutting needed. With a wrap, you can tuck any shirt in.

Just live your life.   Travel / dance / do it all.   It’s only a pouch.   Everyone has issues. 🌈

Yes, a kangaroo would agree. 😋🤣

Terry, you are so right. I can only hope I can overcome my fear.

My fear, Terry, is to empty in a public bathroom, and while I am emptying, the odor will devour the entire ladies' room as I try to sneak out without anyone knowing I'm the one that made the smell.

I also believe what caused all these fears of being at a restaurant, party, airport, is because I have had accidents. At home, okay, I deal. In public, I come very close to a panic attack. I don't get panic attacks, as I said, I come very close, I think.

I also refuse these days to use the opaque vs. clear bags. I want to see what I'm up against.

Best wishes and thanks again.

Meanwhile, this summer... at a popular bar-grill-hot spot. In the men's room while emptying... I felt a big vibration possibly coming from the door on the stall. Earthquake in Jersey? Nah...

This SOB was banging on the door because I was in there too long. Upon opening the door, 3 guys appeared to be waiting.

What would Mr. BRADY do?

I guess there is a time limit for normal, shitting people.

Warrior, you really have it together. To be honest, when I started browsing this site, I thought, "I've had this for thirty years; no one's going to be able to help me." I didn't think I could give advice; I just thought I would hear a lot about how much we all hate this bag, and that is not what I heard at all. This has been very interesting, and I am going to take everyone's advice and see what works for me.