Hi. So I keep reading so many different stories about Ileostomy and I just am trying to wrap my head around what life will be like without my rectum and colon. I never thought I would say this but I wish I could have regular colostomy vs. ileostomy. Is stoma really always active? So how the heck does anyone ever sleep if they have to change the bag every few hours? How do you not feel it and be able to sleep. If it is always active then it is all stiff and perky so must be much more noticeable? I was thinking I could maybe not eat before a meeting or something so it wouldn't bulge and make noise or give off gas but I am also reading that it doesn't make a difference and you have to keep eating regularly. Does anyone have one and have a different experience than this! I wasn't planning to tell people other than my close family but it sounds like I may not have a choice but to tell coworkers. It really is what stops me but I am not going to have choice much longer. I will do what I have to do to live and see my kids grow up but if I didn't have them...I could see myself slipping into big depression...
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Ileostomy - is stoma always active?
- Thread starter spingirl
- Start date
How active someone's ileostomy is can depend on many factors:
a) how much of the small bowel has been removed.
b) what kind of diet they have (volume of food + type of food)
c) do they drink coffee or sugary drinks?
d) do they eat small meals throughout the day or one/two large meals?
I've seen it being said that most ileostomates will empty between 5-12 times a day, but that assumes they empty when the pouch is 1/3 full or less. I empty about 7 times a day, but I will let my pouch fill beyond the halfway mark if I'm at home - I also eat a lot so....
My stoma is generally inactive from about 10am to 4 pm.
Some ileostomates have a high-output stoma and it is always active - some slow it down using OTC meds or changing their diet.
Personally, these trade-offs far outweigh what my life was like before my stoma, and I would do it again in a heartbeat if I were in the same situation of having to go 20+ a day, always painful, always urgent and always completely unpredictable.
a) how much of the small bowel has been removed.
b) what kind of diet they have (volume of food + type of food)
c) do they drink coffee or sugary drinks?
d) do they eat small meals throughout the day or one/two large meals?
I've seen it being said that most ileostomates will empty between 5-12 times a day, but that assumes they empty when the pouch is 1/3 full or less. I empty about 7 times a day, but I will let my pouch fill beyond the halfway mark if I'm at home - I also eat a lot so....
My stoma is generally inactive from about 10am to 4 pm.
Some ileostomates have a high-output stoma and it is always active - some slow it down using OTC meds or changing their diet.
Personally, these trade-offs far outweigh what my life was like before my stoma, and I would do it again in a heartbeat if I were in the same situation of having to go 20+ a day, always painful, always urgent and always completely unpredictable.
In the first few months, your stoma will sort of just do whatever, whenever, but then it calms down and you will know its pattern. Mine is very active between 4 am and 6 am, regardless of what or when I last ate something, but then throughout the day it is active only after I eat something. I don't get up in the middle of the night or anything to empty...just sleep right through the night. It pretty much follows the same schedule that I had with a colon when not flaring.
I had a high output Stoma, so it was active most of the day. I used to get up once in the night to empty my bag, and then 7 or 8 times during the day (I liked having an empty bag so sometimes there wouldn't be that much to empty out.)
I did find that if I ate 5 or so marshmallows, after 15 minutes my output would stop for 20 minutes which made changing my bag so much easier!! Stewed Apple also really helped slow down my output. You definitely need to keep eating, if you miss meals you will find that your output becomes very liquid which isn't good.
I did find that if I ate 5 or so marshmallows, after 15 minutes my output would stop for 20 minutes which made changing my bag so much easier!! Stewed Apple also really helped slow down my output. You definitely need to keep eating, if you miss meals you will find that your output becomes very liquid which isn't good.
Remember that liquid comes through your ileostomy, so it is active whether you eat or not. My most active is in the morning after breakfast. (Orange juice will pass through within an hour for me, which is actually quite helpful because it rinses out the bag without me having to do any work!)
I usually eat dinner fairly late, around 9 and then bed by 11. I empty my bag right before bed, and usually only have to get up to empty it once or twice (mostly for gas, I have filtered bags but find the filter stops working after the first day or so because I have such a high liquid output) Then I empty it first thing in the morning, or right before I leave for work. Depends on how full it is
During the day when I am at work I empty it whenever I go to the bathroom if there is any output. Helps to keep it flat and not noticeable. Once you get used to it, its fairly quick to do and doesn't take much more time than your average tinkle! I empty mine between the legs, so coworkers wouldn't even notice if they saw me in the stall. I've had loud bowel noises for a long time due to frequent obstructions, so my coworkers are pretty used to my bowel sounds. Surprisingly, I don't have many with my stoma. Sometimes during meals or right after it makes noises, but nothing too embarrassing.
When I first got it I was extremely self conscious about it, but now I'm pretty open about it. Some people are really uncomfortable talking about stoma's, but for the most part I find that my coworkers who know are interested in "how it all works" and supportive. I'm the girl who doesn't poop or fart! (At least in the conventional way!) I've turned it into a big joke, and it's really helped me adjust.
Good luck!
I usually eat dinner fairly late, around 9 and then bed by 11. I empty my bag right before bed, and usually only have to get up to empty it once or twice (mostly for gas, I have filtered bags but find the filter stops working after the first day or so because I have such a high liquid output) Then I empty it first thing in the morning, or right before I leave for work. Depends on how full it is
During the day when I am at work I empty it whenever I go to the bathroom if there is any output. Helps to keep it flat and not noticeable. Once you get used to it, its fairly quick to do and doesn't take much more time than your average tinkle! I empty mine between the legs, so coworkers wouldn't even notice if they saw me in the stall. I've had loud bowel noises for a long time due to frequent obstructions, so my coworkers are pretty used to my bowel sounds. Surprisingly, I don't have many with my stoma. Sometimes during meals or right after it makes noises, but nothing too embarrassing.
When I first got it I was extremely self conscious about it, but now I'm pretty open about it. Some people are really uncomfortable talking about stoma's, but for the most part I find that my coworkers who know are interested in "how it all works" and supportive. I'm the girl who doesn't poop or fart! (At least in the conventional way!) I've turned it into a big joke, and it's really helped me adjust.
Good luck!