Posted by
SallyWillard, on
Mon Mar 28, 2011 6:46 pm
Hey guys! I'm fairly new to this site but I've looked all over and can't seem to find an answer to this one? I have CD (17 years) and an illeostomy (5 years). My issue is this: Is there some type of bag that will allow me to sleep through the night? I wake up anywhere between 1-3 times every night. It's getting old and I need my beauty sleep. Any ideas? Or existing inventions? Thanks!
Reply by
Xerxes, on
Mon Mar 28, 2011 8:49 pm
Hi Sally,
This seems to be a constant problem especially for ileostomates who have a high output. Of course, there is the obvious solution and that is to restrict your intake after a certain time so less will be passed while you're sleeping. Another one would be to use a high output pouch only when you are sleeping. If you use the convatec two piece system this is easily done by just snapping the smaller pouch off and replacing it with the high output one. I am sure others will have additional good suggestions for you.
X_
This seems to be a constant problem especially for ileostomates who have a high output. Of course, there is the obvious solution and that is to restrict your intake after a certain time so less will be passed while you're sleeping. Another one would be to use a high output pouch only when you are sleeping. If you use the convatec two piece system this is easily done by just snapping the smaller pouch off and replacing it with the high output one. I am sure others will have additional good suggestions for you.
X_
Reply by
banshie3by5, on
Mon Mar 28, 2011 9:15 pm
Hi Sally...as Xerxes said,a nice 2-pc system would allow size changes. My colo acts like an ileo due to cut&paste surgeries. First surgery took 11cm of ileum, 2nd surgery took a couple seperate chuncks of large intestine, then the Colo at the Sigmoid/colon junction. That was 5yrs ago. I wear the large bag day & night cause when my body decides to flush I blow the smaller bags off. I used to blow larges off too, but ileosorb & diet helps. I use Coloplast's Assura system. It has small bags, large bags, and stoma caps for intimacy or showering. They all fit the same wafer. The filter in the bag doesn't really work, but I like that because I think gas still stinks through the charcoal. I haven't had any trouble with leakage. I put the little swim/shower sticker (enclosed) on it just to be safe. Another thing I find useful is Ilesorb or Par-Sorb granule packets. They turn the liquid to gel-mush so liquid doesn't leak. I use Eakin seals to protect my parastomal skin and get a good adhesion/seal with the wafer. I don't use any preps or adhesive removers, as suggested by WOCN, and the skins been healthier with a better fit. Another idea for good glue-sticky is heating pieces with a hair-dryer or heater. For me it worked better then my hands or armpits, like the WOCN showed me.
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Reply by
perkyberky, on
Mon Mar 28, 2011 9:32 pm
Could you tell me more about the ilesorb or par-sorb packets. I have never heard of them.
Reply by
chaceme5961, on
Mon Mar 28, 2011 11:21 pm
Hi Sally,
there is bags that have what i call a spicket at the end of the bag instead of the opening with the clamp its a nice size bag and i find i last the night sleeping and will give you confidence to do the same, i still get up in the middle of the night but its only once and some nights i sleep all the way thru, its by hollister and they take most insurances i dont know what size you need but if you go to hollister.com you will be able to see all the new items. they get new stuff all the time, i have been using these bags since july and i love them, they are called "new image high output drainable pouches" i will check in more often and see if it worked out for you, i first had a colostomy from 04-10 and just had the illiostomy put on for good, i hope this helps and plz if you need any other help ask, ill be happy to pass on any useful hints
blessings
maria
there is bags that have what i call a spicket at the end of the bag instead of the opening with the clamp its a nice size bag and i find i last the night sleeping and will give you confidence to do the same, i still get up in the middle of the night but its only once and some nights i sleep all the way thru, its by hollister and they take most insurances i dont know what size you need but if you go to hollister.com you will be able to see all the new items. they get new stuff all the time, i have been using these bags since july and i love them, they are called "new image high output drainable pouches" i will check in more often and see if it worked out for you, i first had a colostomy from 04-10 and just had the illiostomy put on for good, i hope this helps and plz if you need any other help ask, ill be happy to pass on any useful hints
blessings
maria
Reply by
chaceme5961, on
Mon Mar 28, 2011 11:26 pm
i never heard of the swim/shower caps to put on stoma? omg that would be great, i use hollister and only the convatec paste and strips i would love to look into that plz tell me, can i find them on hollister site? ty for the info
blessings
maria
blessings
maria
Reply by
PJT, on
Tue Mar 29, 2011 9:19 am
Hi Sally,
I've had my ileostomy fo over 30 years and it's rare to ever get a full night's sleep without having to go to the bathroom and empty my pouch (I prefer the word "pouch" to "bag". It sounds less icky!) I agree totally with Xerxes. Try to limit what you eat before you go to sleep. If you eat a big salad you may as well just stay awake!
Usually one visit to he bathroom at around 4:00 A.M. does it for me. I use a Convatec and I don't think using a larger pouch would make any difference for me. I would still want to empty it, even if it wasn't totally full. My technique, which I've mentioned when this question came up before, is to not even dwell on it and to just get up and empty the pouch. If I start thinking about it (can I make it till morning? will I get back to sleep? etc.) my brain will turn on and I'll never get back to sleep. Also, I keep a night light in the bathroom so I don't have to turn on all the lights. Hope this helps.
PJT
I've had my ileostomy fo over 30 years and it's rare to ever get a full night's sleep without having to go to the bathroom and empty my pouch (I prefer the word "pouch" to "bag". It sounds less icky!) I agree totally with Xerxes. Try to limit what you eat before you go to sleep. If you eat a big salad you may as well just stay awake!
Usually one visit to he bathroom at around 4:00 A.M. does it for me. I use a Convatec and I don't think using a larger pouch would make any difference for me. I would still want to empty it, even if it wasn't totally full. My technique, which I've mentioned when this question came up before, is to not even dwell on it and to just get up and empty the pouch. If I start thinking about it (can I make it till morning? will I get back to sleep? etc.) my brain will turn on and I'll never get back to sleep. Also, I keep a night light in the bathroom so I don't have to turn on all the lights. Hope this helps.
PJT
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Reply by
SallyWillard, on
Tue Mar 29, 2011 9:53 am
Thanks for all the responses. I have tried not eating past a certain time or watching what I eat but it doesn't seem to effect the amount of output, just the consistency. I guess mine is on duty 24/7 no matter what. I will look into the larger output "pouches" when I place my next order which should be within the next week. Great to have someone to ask who understands and has experienced the same issues. You are all so pleasant, optimistic and inspiring! Do you think that's because of all we've been through or were we like this before and it just got amplified? Thanks again!
Reply by
chess124, on
Wed Mar 30, 2011 2:25 pm
hiya.
if high putput at night is a big proplem then try eating around 5 large marshmellows half an hour before bedtime.along with the gelling sachets this will help to slow down output and you might get a ful nights sleep.give it a try and see how you go.let us know how you get on
if high putput at night is a big proplem then try eating around 5 large marshmellows half an hour before bedtime.along with the gelling sachets this will help to slow down output and you might get a ful nights sleep.give it a try and see how you go.let us know how you get on
Reply by
The Bag, on
Wed Mar 30, 2011 3:00 pm
Hey there...today is my 2 year anniversary. That being said, I had the same fear as you. I tried staying up later...no dice. What I've been doing is making sure I'm done with dinner before 7 and let the chips fall where they may. I sleep solid through out the night, there are exceptions, when I get gassy. This is rare. Sorry to hear that you have to get up that often. Also, try eating a light dinner. They don't make our bags any bigger, I don't think that would help either. Hope you work it out or if some other folks have any other ideas.
OSTOMATES RULE!!
OSTOMATES RULE!!
Reply by
panther, on
Wed Mar 30, 2011 3:17 pm
If your output is very watery you can get some speacialist bags they are the same as urostomy overnight bags, you have a tap (But it's wider than the urostomy ones) on the end of your bag then a tube attatches to that and attatches to a bag you have on the floor. We can get them in the UK, not sure if you can get them?
Reply by
Primeboy, on
Wed Mar 30, 2011 5:11 pm
Hi Sally,
Talk with a Hollister representative about their high-output bags with soft taps. These bags are designed for ileosomates with high liquid output. The bag has a plug under it which will allow it to drain into a much larger bag. Hollister is good about sending people samples for their products. Good luck!
Prime
Talk with a Hollister representative about their high-output bags with soft taps. These bags are designed for ileosomates with high liquid output. The bag has a plug under it which will allow it to drain into a much larger bag. Hollister is good about sending people samples for their products. Good luck!
Prime
Reply by
butterfly48, on
Thu Mar 31, 2011 4:18 pm
I too have the same problem even when I am up - watching tv or reading so you can imagine how it is going to the bathroom every 15 minutes or less especially when invited out to a friends house for dinner. It has almost been a year and my situation has improved depending on food. Marshmellows do work and so does rice in slowing the bag down .
Also I have to keep my stress levels low or my bag causes problems such as gas, not emptying then get a headache or bag emptys too much at one time and will burst.
Unfortunately, I have to take just a small dosage of morphine - the side effect is constipation and with a sleeping pill I can least get 6 hours of sleep without getting up. You are taking the right approach by talking to people and trying different foods to see what agrees with you, hopefully, in time you will be able to control your stoma so it doesn't make you miserable.
Can anyone answer: When your bag is 3rd full do you get stomach cramps or get a headache? Regardless if it is liquid or solid
I have an ileo. Good Luck Butterfly48
Reply by
ilsn2u, on
Sun Apr 03, 2011 5:21 pm
Primeboy--do you have Hollister numbers for the appliances you're talking about? That would be useful. Thanks.
Reply by
Primeboy, on
Sun Apr 03, 2011 5:50 pm
Hi Ilsn2u,
I use the Hollister New Image 18013 High Output Drainable Pouch. When I was in the hospital, the ET nurse told me I could get tubing and a large collection bag which could hang off the side of my bed if necessary. I never ordered it because the high output bag was sufficient. I have not seen the large collection bag in the catalog so you should talk with a Hollister rep about it. Keep in mind that the 18013 pouch is intended for ostomates with liquid or muddy output. Solid stool will not drain out of the bottom tap. Good luck!
Prime
PS: I never get cramps or headaches resulting from the fullness of my bag.
I use the Hollister New Image 18013 High Output Drainable Pouch. When I was in the hospital, the ET nurse told me I could get tubing and a large collection bag which could hang off the side of my bed if necessary. I never ordered it because the high output bag was sufficient. I have not seen the large collection bag in the catalog so you should talk with a Hollister rep about it. Keep in mind that the 18013 pouch is intended for ostomates with liquid or muddy output. Solid stool will not drain out of the bottom tap. Good luck!
Prime
PS: I never get cramps or headaches resulting from the fullness of my bag.
Reply by
lottagelady, on
Sun Apr 03, 2011 6:13 pm
Hi Butterfly - I don't get a headache when my bag is full, but I do get one if I eat pastry of any kind, although puff and flaky are the worst! Weird ......!
Reply by
banshie3by5, on
Wed Apr 06, 2011 12:46 pm
Ilesorb & ParSorb are the brand names. here's one link http://www.brucemedical.com/abflak.html
I get mine at http://www.byramhealthcare.com/
Hope that helps
Marcella
I get mine at http://www.byramhealthcare.com/
Hope that helps
Marcella
Reply by
mooza, on
Mon May 16, 2011 5:27 pm
yeah i have the black eyes to prove it aswll i mite check thees post out but i use coloplast pouches and really dont want to change i will chat to primo havnt heard of these things down here in australia ... mooza .will come bac to this page later in the day will talk to my stomal tharapy nurse aswell find out why we arnt told about any of this stuff hmmmm 
i do use the ileo gel but i cant be bothered turning toilet lite on to put another one in if i have more watery substance during the nite i think my brain is soooo switched on to just get up during the nite ive actuall just sprawlled onto the floor hahahah not funny at the time but the illeo gel works great ...i thought somone had another idea should of read first .xx mare -mooza
Reply by
MarkP, on
Sun Jul 03, 2011 8:32 am
| chaceme5961 wrote: |
| i never heard of the swim/shower caps to put on stoma? omg that would be great, i use hollister and only the convatec paste and strips i would love to look into that plz tell me, can i find them on hollister site? ty for the info
blessings maria |
Mini caps from Coloplast might be what you are after for shower or swim or intimate.
Reply by
mooza, on
Sun Jul 03, 2011 8:43 am
yep we would all.. myself included like too not have those black eyes i wanna sleeeep through the nite 
oh well i need water during the nite so its by the bed very dehydrated and even 5hours straight sleep would be amazing xxxxxxxxxxxxxxxx
oh well i need water during the nite so its by the bed very dehydrated and even 5hours straight sleep would be amazing xxxxxxxxxxxxxxxx
Reply by
Pinky, on
Sun Jul 03, 2011 6:31 pm
Hi Sally - I really know how you feel as I have to get up numerous times in the night to urinate as the nerves there were destroyed in my last surgery in 09. I think I have slept only ONCE through the night since 09.
Couldn't you take a dose of Immodium before bed? Perhaps that would at least cut down on the number of times you have to get up. Might also halp you sleep better - I know it makes me sleepy when I take it.
Couldn't you take a dose of Immodium before bed? Perhaps that would at least cut down on the number of times you have to get up. Might also halp you sleep better - I know it makes me sleepy when I take it.
Reply by
BunsenH, on
Thu Apr 21, 2016 2:30 pm
Hi, everyone. I'm a newbie here, though I have lots of experience with other fora. I don't have an ostomy myself, but am supporting my partner who has an ileostomy.
The problem of getting through the night with having to empty the pouch every couple of hours has been messing up her sleep and therefore messing up the rest of her life. I went looking for solutions and found this discussion. Thank you! She contacted her supplier, and has been trying out the Convatec pouch with its spigot-ish tube at the bottom.
Her supplier's support person also sent along a couple of urinary collection bags, which come with attached clear tubing which connects inside the pouch's spigot. The problem with this setup is that the diameter of the tubing is narrow at the two connection points; it clogs very easily with the undigested bits.
I found that I could replace the original tubing with larger-diameter clear tubing bought from a hardware store: 1/2" inner diameter, 5/8" outer diameter. This goes over the outlet from the pouch, and over the intake of the urinary bag. It was somewhat difficult to remove the original tubing from the urinary bag. What I found worked was to cut the tubing just outside of the bag, then push a very small flat screwdriver between the tubing and the bag's intake to break the contact between them in one spot. Then needle-nose pliers to twist up the tubing, breaking it free from the bag.
The problem we're working on now is emptying the urinary bag. Its outlet is too narrow, and again clogs easily. Since we're on a limited income, and my partner's insurance is refusing to cover the expenses for her supplies, we need to be able to empty, clean, and re-use the puch and bag. Can anyone suggest methods for unclogging, or other good collection systems? Thanks!
Reply by
Primeboy, on
Thu Apr 21, 2016 5:41 pm
Hi Bunsen. It seems to me that you are looking for solutions to treat the symptom, but not the problem. Your partner is losing an enormous amount of fluid and that situation needs to be stopped asap. There are lots of medications that can help, ranging from Imodium, Lomotil to opioids. Diet is also important. Your partner's GI doctor will suggest what's best. I have been living with an ileostomy for 6 years now so my advice comes from personal experience. I can tell you that I don't eat late dinners and I use a large drainable bag from Hollister. I usually wake up twice nightly to empty the bag regardless of how much or how little content there is, and I fall asleep right away with confidence that the bad won't fill and burst. You have come to the right place for information on ostomies and there are some great discussion threads on your area of concern. Good luck!
PB
Reply by
BunsenH, on
Fri Apr 22, 2016 9:20 pm
It's not that simple, I'm afraid. The ostomy surgery was performed in an emergency; the stoma is neither well-shaped nor well-positioned. If the stool thickens more than slightly, the stoma blocks and distends. The skin around it gets irritated and the flange starts to leak.
My partner consumes large amounts of home-made rehydration fluid, per the WHO recipe, and her doctors are keeping an eye on her bloodwork.
The only flange system she's found so far that can accomodate the sunken-in stoma is a highly-convex flange from Convatec. It doesn't look like she can use the Hollister stuff or the Coloplast night pouch.
Diet and meal scheduling are a work in progress. :-|
