Struggling with Ostomy Bag Management at Night and in Social Settings

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baba
Mar 30, 2009 10:15 pm
Do you all have to get up at night to empty at least once?? And have to put on a light ( of course) and then try and get back to sleep???? Also, do you have trouble with gas filling up your bag after you eat?? Sometimes I am out with friends and there is a balloon under my shirt.!! I am very new at this and have no one to talk to and ask questions ...

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annie_nu2
Mar 31, 2009 3:03 am
Yes, me too. Or sitting at work I look down and notice the balloon under one side of my clothes. I am starting to get used to the bag so until I actually see the bulge I forget..sometimes. At night I am still afraid I will forget and roll over in my sleep and explode it!!

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But it is getting better all the time.

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I don't know anyone else with a colostomy either so I don't usually talk about it to friends. They just wouldn't/couldn't understand.
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jakenjypsy44
Mar 31, 2009 5:29 pm
The only thing you can do is hit the bathroom and burp the bag. AS for rolling over on the bag while sleeping, luckily I have never had mine bust.  I roll over on it with no problem.  Of course, I do not go to bed with a bag that is over 1/4 full either.  

Good luck.
TexasGirl
Mar 31, 2009 11:07 pm
Hi Baba.  I've learned that if I am going out, I must be careful of what I eat prior to going out.  Otherwise, I will have the "balloon" to deal with.  There are nights that I have had to get up and let the air out and there have been mornings I have awakened and I cannot understand how my "balloon" did not burst during the night.  But I have never had one do that and I've had the bag for two years now.

It is hard to deal with this on your own with no one to talk to or that understands the ostomy life.  I finally joined an ostomy support group in a nearby city last month.  I wish now that I would have done it alot sooner.  They meet once a month and I am really looking forward to the next meeting.   This website too has been a hugh help in dealing with the ostomy.  The people I have talked to have been very considerate, understanding and willing to share their knowledge and experiences.    I hope that it will be the same for you.

My best to you.  Debi
annie_nu2
Apr 01, 2009 12:55 am
Yes, this site has been very helpful to me. There are no support groups near my town. Maybe if I drove 75 miles, but I would probably have to stop to burp the bag because I worry about the seat belt holding everything too tight. Anyway, the folks here have always answered my questions without making me feel stupid. If you have any questions don't be afraid to ask. Many people may have to view your question before the person who knows thwe answer comes along. Good luck.

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Whoa
Apr 03, 2009 6:21 pm
Hi Baba and all

I don't have an ostomy, but have had a few thousand patients with them at this point....and no perfect answer to the gas solution yet.



The folks here probably have the best advice.  Everyone's bowel is pretty individual in how and when it eliminates whether you have a colostomy or not.  Everyone has different eating schedules with different foods also.  If you have had chemo or radiation, that changes bowel habits more for some than others.



The teaching line is with a colostomy, you CAN eat what you like (for most).  Whatever foods made you gassy, caused loose or more frequent stools will continue to do so with a colostomy.  This is true if you have one or not, but in the case of having a colostomy, you eliminate when your bowel wants to.



Sometime folks with scheduled eating patterns (eat their 3 meals/day on a fairly routine time daily) seem to have more predictability when they will have a bowel movement.  You may want to try eating meals at the same time, watching the known gas forming foods (onions, garlic, spicey things, eggs, cheese, vegetables like brocolli, cabbage, etc., beans, fried foods, etc) that are usual gas culprits and eat them in smaller amounts or restrict them if you have an event to attend where it will be inconvenient to deal with gas or stooling.  Some folks try Beano, or Gas X (Simethicone) with some help.



For the ballooning of the pouch, you may want to try one that has a gas filter.  The gas slowly and passively escapes through a charcoal filter, so no odor.  It isn't perfect, might help.



I have folks that do all that and still have gas issues.  The folks here may have some better suggestions.
Mike
Apr 05, 2009 12:51 am
Does anyone have trouble with the bag filling up with gas in the middle of the night
annie_nu2
Apr 05, 2009 12:36 pm
I sometimes have to get up to burp out gas during the night, too. But like Whoa said it greatly depends on what/when I eat. I don't have any set meal time or menu so it can happen a lot. I did learn NOT to try to burp it without getting upright.

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That will usually lead to disaster, especially if done while half asleep. But you have to do what you have to do.

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Past Member
Apr 05, 2009 2:01 pm


geez, i cant live without these "vented" pouches. they have a little sticker that will seal off the vent should the situation require you go "ventless". you can call any of the manufactures and request a few to try at no cost.
annie_nu2
Apr 05, 2009 8:09 pm
Is there anything different about their use?? Fit, etc?? How much difference in cost/insurance coverage? I have read people on here refer to them, but have never seen them. Availablity in US?
budd002
Apr 06, 2009 12:35 am
In my attempts to get an entire nights sleep without having to get up I stop eating at  or just before 7 pm. I try to avoid vegies and gas producing items to cut down on the gas as well. However like Nurse said everyone digests differently and you have to figure out how your body does it. I know I will "extract"  about 3 hours after I "intake" so I can pretty much time what is going to happen.
Whoa
Apr 06, 2009 1:35 am
annie_nu2



US insurance coverage:  depends. Most do; in my state Medicaid does on some companies, doesn't on others.  You can call the manufacturer's customer service line and they could give you trial samples.  Hollister and Coloplast seem to be covered a bit better than Convatec in my state.



Convatec:  1-800-422-8811

Coloplast:  1-800-533-9464

Hollister:  1-80-323-4060
softncuddly
Apr 06, 2009 10:14 am
Baba, I hear you.....I have had my ileostomy now since Feb 2002, I still get up during the night sometimes, and ballooning still happens depending on what I eat no matter what time of day. You'll get used to your bodies patterns, when I eat a meal, what I ate at my last meal works it's way out, so I usually have to empty within 5-15 mins of eating. Because I have an ileostomy my bowel works all day, all night long, so how often I empty really depends on the types of food I eat, Spicy and Sugary for me both equal high output....veggies do as well, but they come with lots of ballooning. As stated by someone above I don't recommend "burping" your pouch from a horizontal position it can be very messy, but don't skip doing it just because you are sleepy it will lead  to a "blow out" so to say.....if the pouch is full it has to go somewhere and usually leaks out the sides. Good luck getting to know your stoma, it will be full of wonderful surprises in the beginning, but they will all work themselves out......remember our friend baggie is giving us the quality of life we didn't have before.
Past Member
Apr 06, 2009 10:57 am


the 2 piece system i use accepts the vented pouch, standard pouch, or vented cap.
they are approx 50$ per 30 which is close to the standard pouch if i remember correctly.
i buy my own so have no clue on insurance coverage....do the math, about $1.50 per day..it`s worth it to me to not have to deal with "balooning". why not contact your systems manufacturer and ask for a few samples.... they will send them to you at no charge.


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Monsieur Le President
Apr 06, 2009 11:43 am
I use a 2 piece bag only because it's the only one that has enough capacity, but I NEVER just change the pouch, because it is always the flange that fails, & unless you have a rock hard stomach, changing the bag on a somewhat wobbly belly is impossible.

The vent with an ileostomy with more or less always liquid output is great until you lie down & then it leaks, in fact sometimes if the contents get squeezed up above the belt line then it leaks on your shirt, & then people just think you're a messy eater ( I am anyway ).

I had some correspondence with the manufacturers ( Convatec) regarding 2 piece bags, but I didn't get anywhere.

Fortunately with the NHS in the UK, prescriptions for equipment come free, so changing to another supplier is no proble.
Past Member
Apr 06, 2009 2:54 pm
I have had a colostomy (crohns) for over 30 years and excesssive gas has been a serious problem for me on many occasions. There have been long periods of remission from this condition as well.

The one thing that seems to help more than anything is taking a drug called metronidazole for short periods of time, maybe 3 days or so. My Doctor, who I feel was one of the best I have ever seen explained it to me like this; Occasionally the bacteria in the intestines get out of balance. This could be due to taking antibiotics, emotional distress, pain killers or other medications etc. When the helpful digestive bacteria get out of balance it is almost impossible for the minority bacteria to increase in number due to the fact that the other's have taken over so to speak. What happens when metronidazole (Flagyl) is taken is that all bacteria is killed. This gives them a chance to regrow in balance and aid in proper digestion. (pro-biotics would probably be helpful after treatment) Ask your GI Dr. about this.  (metronidazole is an antifungal antibiotic, ) In addition I should add that this drug is not to be taken within a few days of alcohol consumption. To do so can cause a disulfiram-like reaction, flushed face and skin, headaches, tachycardia and more.

I am not a Dr. and am only relating my own experiences with excessive gas. I hope this helps. Be sure to discuss this with your GI Doctor before trying it.
Celeste
Apr 11, 2009 1:55 pm
I've had my illeostomy since Oct of 2003, at first I wore one piece appliances... there was only the outlet with the clip at the end to empty, and relieve the air too.

I had different companies send me samples until I found the one that was for me and my life style.  (In which I am very active)

I have the comfort of wearing  a wafer 1 1/2 inch that you cut the hole yourself  # 125263 which they have hole cutters that are so cool.... I cut holes in several of them so that they are ready when I'm ready for them.

                                                Closed end pouch  #413169  which is about 6 inches long

                                                 Closed end mini  # 401530 that is good for swimming or for

                                                 intimiment moments.

I also use stoma adhesive powder.

          This appliance makes it easy to let out gasses if need be.  I've been known before getting in the car after eating at a restaurant to reach inside the top of my pants and burp the thing.....

We have to remember... while we have gas building up in our bags... there are people squirming in their seats to prevent making loud noises....lol   and have to run to the bathrooms.
Past Member
Apr 13, 2009 5:04 am

I have a Friend that is a RN she told Me toprick the topof the bag with a pin and you knoe what itworks,Mike
Whoa
Apr 13, 2009 1:22 pm
The probllem with pricking the pouch with pinholes is you will lose the odorproofing as gas escapes.  Maybe not an issue if home, but in public.....



There are filtered pouches that allow gas to be released slowly, and the charcoal filter eliminates the odor.



You may still need to vent the pouoch if majorly gassy as it is a slow release.    There are also vents you cn attach to the pouch that you can open to release gas (,Osto-E-Z-Vent) though that won't solve a night issue unless you wake up to open the vent.
andyangiet
Apr 30, 2009 4:08 am
I have had a colostomy more on than off for many years. I have an Ileostomy now and I wake up in the middle of the night pretty regular to empty. I tried not eating for a few hours before I go to bed but it seems that I wake up at 3am every morning to empty. I too don't have a support group near me. I would have to drive for at least an hour or more one way. I don't know anyone who has one either. I can't really talk to friends cuz they don't really understand. I had lots of problems with my bags and had to try several different types. I found one it is Coloplast 2 piece and doesn't have tape around it. It was really hard to get used to cuz I thought that it would come off easy and it seems to be doing good. If you need to talk to someone I am here. If you have any questions I can try to answer them. I have been in and out of the hospital more in the past 7 years than I have been out of the hospital. So I learned alot of different tricks from the ostomy nurses and just trying new stuff.
cagabolsa
May 03, 2009 7:53 am
Oh yes, I know very well how it is to get up 3 to 5 times at night to empty my baggy.  

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  And indeed, sometimes I woke up because of the sweet smell of a leaking appliance, or just because I felt soaking wet.

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Despite all this I really cannot be bothered by what I eat during the night or day.

If I would have to pay attention to every single little detail that could provoce gases, then I would not have a life.

This type of behaviour is the source of anxiety, negative attention, and a relations killer.

I would not like to live with a person who lives like that.



I eat and drink whatever I want and whenever I want.  I only live once, and I cannot allow to have an ileo-ostomy take over my life.



Of course, some situations are very annoying, like being stuck in a traffic jam on a hot day and your baggy starts growing out of your pants. With guests in the car you cannot open your baggy to let the gas escape.



And if you are in a shopping center without toilets and you are eager to leave as soon as possible because there´s a third leg growing inside your pants.



I can´t wait for the day that one of those brain dead segurity guards stops me and asks me what I am trying to steal from the shop. "Show me what you got"  Okay open your hands.......

He will never bother you again.



Well that´s me folks, maybe I´m different, but I LIVE.



Cheers balloon riders.

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alligator
Jun 30, 2009 7:31 pm
I bought a cloth back brace with ribs in it at my local medical supply store. I wear this when in public or for more intimate times. It keeps the ballon under clothing at the opening end and it muffles gas. You will need to burp the bag a little more often, but Im not gonna walk around with it showing for all to see. even had a policeman ask what it was. I just had to show him, he high tailed it out of there. I ask 2 surgeons if this back brace would damage the stoma and they said no.