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. 

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

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.

My Ostomy Journey: Ryan | Hollister

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

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.

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.

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.

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.

😂🤣😂Way to 🤣 

Lay 4 or 5, 2-foot-long pieces of toilet paper on the bowl water before you empty. Will help to quell splashing. Or... get bag ready, flush toilet, empty bag during flush.

Public toilets with auto flush... grab a couple of paper towels before entering stall. Fold paper towels in half, place over flush sensor.

Remove paper to flush.

Lucky it wasn't a certain feline tapping the door...

🔒 Login to see image
"Is that you, Warrior?"

😁.....No......pussy...allowed in the men's room. 🤦‍♂️

That's all needed. Take the advice and see what works for you.

By the way, I hate my bag! 😁😋

Why would you say it makes some interesting dump stories?

With a two-piece and rotation, I empty the same as you. Vertical.

Do you have any interesting dump stories? No wait. Forget I said that.

You do have stories.

Now if you think a vertical bag being vertical to drain is a story, then I, too, would agree. But for me, that story would need pictures or crayons.