Tips for Managing Nighttime Ostomy Bag Emptying and Diarrhea

Hello

I have an ileostomy and permanent diarrhea. I have to get up several times during the night to empty my bag. Now I try not to eat or drink at least two hours before I go to bed, and I am also on Lomotil for the diarrhea, which I take about an hour before I go to bed. Does anybody have any tips that I can use so that I am not up and going to the bathroom throughout the night? I would try those crystals, but my waste is not watery and it can be hard to completely empty the bag as it is. Also, does anyone wear those special ostomy underwear? I was wondering if they are worth the money. And finally, does anyone sleep on their stomach? It's one of the things that I miss the most.

Thanks

Wish I could help, but I'm new to everything (had the ileostomy surgery last month)... I was wondering about the special ostomy undies as well... They are so expensive, but are they worth the money?

Hi Tess,
I believe you should stop eating earlier in the day. This is what I have found most helpful. I rarely have to get up at night as I stop eating about 4 hours before I go to bed. Also, I have tried the specialist underwear but find the most comfortable are tummy control large pants which I buy from Marks & Spencer. I don't know if you have Marks & Spencer in Canada? They feel quite tight at first but you get used to wearing them and they give much more support than ordinary underwear. I used to sleep on my tummy too, but cannot anymore and I really miss it. My output is quite liquid, but I have heard of a gel which is a deodorant and makes pouch easier to empty. Can't remember the name of it. Hope this helps. Angie

Thanks for the help - I'll try that.

Thanks anyway, and if you need help, etc., just ask.

Words of Encouragement from Ostomy Advocates I Hollister

Tess,
I have a colostomy - with very different issues. But some common issues ..... first and most important ... You can gather information from many places. But each person must find what works for them. Even with information, it takes lots of trial and error. I am more than a year with an ostomy now and still make adjustments, but it is so much easier now.

I came online with the question, "How and when do I shower"? I knew nothing. I left the hospital with sample products and no information. I didn't find any source of information locally. When I called the nurse that had come to my room in the hospital, she would just say call your doctor. This site is where I gleaned all my information. There are so many good people here.

One helpful thing it took me awhile to find (slow learner) - is the search forum bar at the top of the page just under the ads. Once I found it, I learned I could put in almost any topic and find a previous forum topic where almost every subject has been discussed previously. That provided me with a wealth of information.

One more thing it took me awhile to discover was the area under the search bar listing quick searches - Ostomy, colostomy, ileostomy .... more. You can click on one of these and see information on just about everything. At the bottom of the page, there is another bar and that bar has many videos. Sometimes we need to see rather than just be told how to do things. I haven't learned how to easily sort through the many videos.

I still use the search bar all the time. Be patient with your personal learning curve and be okay with mistakes. Welcome to you - Carol, "dawneagle

Oh, sorry Tess. I wonder why you have diarrhea. I don't really suffer from that, mainly losing too much water. And yeah, I use the gel stuff. We also get those ostomy knickers for free, but I think the cost here is $60. Lots of people like them, but with an ileostomy, I'm not a fan. Yeah, I do kinda sleep on my belly, but with one leg raised, kinda like those crime outlines. Hahaha, I loved sleeping that way too. Mostly, I lay on my side, half belly position. Good luck! Hope to chat with you soon. Mooza.

Thanks a lot - will try

Thanks a bunch, Mooza - hope to chat with you soon too - had a great time.

Tess, I have had an ileo for nearly 2 years. I cannot sleep on my stomach anymore unless I want to wake up in a nasty way. My stoma is on the right side so I can safely sleep on my left side. It's nice to have a choice. I bought some of that ostomy underwear and it helped me feel more confident initially by holding the bag in place. Now that I am more confident, I don't care what the bag does, so I don't wear them anymore. Finally, if you have a lot of liquid output, consider a high-output bag. Over time my nightly output decreased although the stoma gets very active around the time I wake up. We are all wired differently so you should experiment and find out what works best for you. Still, don't try sleeping on your belly. That doesn't work for any of us.
Prime

Hi, Tess.

I've also been wanting to check out the underwear made specifically for us, but since the day I had my ileo, there's been one part of my brain that thinks I'll be getting a reversal tomorrow, so I haven't been willing to spend the money. A few months ago I bought some regular underwear which is made of some kind of stretchy material that lies flat. I think they're made by Bali. Because my weight fluctuates wildly, the stretchiness is very helpful. I can also let the pouch hang loose, which is what I usually do, and at times I've kind of folded the pouch to lie across my abdomen instead of just hanging there. The underwear keeps it in place, although at times it's been too comfortable and I can't tell how full it is until I have a balloon that threatens to lift me up and take me away. Primeboy showed me how to use a rubber band to keep the folded pouch from unfolding, although with this underwear, it's not necessary.

I don't like taking Lomotil or Imodium and I also have an ileo, so my output is usually liquid. Having a bit of OCD in me, I often feel like I can never get pouches clean enough after emptying. I use high output pouches, as they hold alot of liquid and they clean really easily after emptying. The end of it is like a urostomy opening, so it really only works with liquid output. If I have to push something through the opening that hasn't been thoroughly digested (think olives, water chestnuts and mushrooms), the pressure this puts on it often causes a slow leak to start, yet I still prefer this type of pouch.It feels cleaner and cleans quicker. Like Primeboy, I suggest you give the high-output pouch a try. If you use a two-piece system, you might get a barrier that fits both your usual type of pouch as well as the high output. This way you can switch off without having to change the whole thing - just the bag. I've always wanted to try an overnight ileostomy pouch (I think that's what it's called) and ordered a sample today, even though the woman I spoke with wasn't sure if it's a product they can send as a sample. I think it hooks into the high output pouch in some way and looks like it's really long, probably goes down the leg, and has a bulge in it, which is a second pouch (in addition to the high output). My only hesitation is that I toss and turn, but I realized recently that I halfway wake up just to turn over, so maybe it won't be a problem. If I do get one, I'll let you know how it goes. In the meantime, if you give the high-output pouch a try, let us know how it works out. Good luck.

Necro, Welcome to the club no one wants to join.

Hi Tess

My thinking is to stop eating more than two hours before bed, say like 4-5 hours before bed. This will help you gauge the output. If I schedule my eating and pooping, I can go out for 4-5 hours with very little BM. Other than that, it's just constant shit, somewhat linked to my eating habits. Without the loperamide and codeine, I would run like a tap. Wish I didn't have to take them, but in the big picture, I wish I didn't have Crohn's. As for sleeping on your stomach, shit the bed a couple of times and you will get over that.

Take care

Hi there, I too have a very active ileostomy, it was created many years ago, as a temp stop gap, but has had to remain. On a slightly different tack. When I get really fed up, just for one day I eat marshmallows and undissolved jelly cubes. (Is it known as jelly there, or jello possibly?) I drink tea, coffee, or water as normal. I find this can help thicken the flow. In the underwear department, my solution is to sew a small thin edging on the inside of my stretchy girl boxers, which I 'hang' the ileostomy bag closure over, so kind of doubling over, or folding the bag. In the day, I use the standard size, as I find even though the bag is folded, more of it remains usable than the smaller size, but it keeps the appearance of a smaller bag. Hope this is understandable! Take care.

Thanks for the help.

Thank you, Lalu.

You're welcome, Necro.

Tess, I sometimes have the urge to sleep on my stomach. I've actually done it, by sleeping on my left hip, actually, and keeping my right side up a tad. It's worked, but I've also woken up in the middle of Shit's Creek without a paddle. There are times I feel like I absolutely have to turn and sleep a certain way. Never really thought about it before, but if you have a cheap bed, don't mind ruining it, I wonder if you could just cut out a big hole so you can sleep on your stomach with the bag in the hole. Then you could yell "BAG IN THE HOLE". You can yell it anyway, but if you scooped out some bed, you'd be telling the truth when you yelled it. Sorry - I haven't been sleeping much lately and posts like this are the result.

After all the shit we have been through, it's good we can talk about this shit. I did just buy a new mattress. So trying to keep this shit off it. I feel like a miracle worker. So far so good!

Good luck with your shit!

I have an ileostomy, too--for 5 years now--I used to get up 2 to 3 times each night, and then I changed to a "high output" pouch--I use Hollister, and the pouch I use is 18013 which I use with the 14505 wafer (of course each size is different, so be sure they match). I find now I only have to get up 1 time each night, which is terrific. I used to be a stomach sleeper, too, but after two hip replacements, that stopped, and I don't even think about it anymore...I'm now a side sleeper, and it doesn't matter which side...both work. But as others have said, each person is different, so it's a lot of trial and error. I find things like bread or potatoes help thicken the output, but that can be a problem too, as if the output is too thick, it can push that wafer right off of your body! So just try to keep a sense of humor and try different things to see what works best for YOU.

Hi,

I've got an ileo like you and have had one failed reversal. I too was getting up at least 2 or 3 times a night. I also dehydrated twice really badly. When I was in hospital, they sent a gastro consultant to see me. He asked how many loperamide I was taking. I told him the maximum dose of 8 per day. He told me that was for a normal person and he told me he had many patients on 32 or 40 tablets per day. I now take 27 x 2mg tablets per day, sleep right through the night 7 or 8 hrs. Very rarely do I have to get up and yes, I can eat later in the night, etc.

Hope this helps.

Lee

Thanks, Lee, but are your meds over the counter? Mine are prescription, and the max is 8 per day.

No, mine are prescription, and like you say, the max is 8 per day. The consultant explained that a lot of people with ileos don't realize that a person with a normal digestive system can only take a max of 8 per day. But due to having no colon and your small intestine being shortened slightly, everything goes through much quicker, so 8 does not have the same effect. I had to raise my loperamide up to 16 straightaway and kept increasing until I found the right level to control my system. Loperamide is harmless, especially to people with ileos. You wouldn't believe the difference it's made in my life. Even the consultant who did the op realized about the levels you need.

I do think the underwear is worth the money. I use Ostomy Secrets. I cannot make it through the entire night but have found that a healthy dose of peanut butter about an hour before bedtime really helps.

Hello... I have a loop ileostomy and also find marshmallow, jelly babies, and pastries can thicken output... Being diabetic and on insulin, I get told off if I eat them lol...
I have used jel sachets that you put in the bag. I got them from the company who I order bags etc. from (Alphamed) here in the UK. They also send me deodorant and a nice mint oil to put in the bags.

There's a company called Vanilla Blush (www.vblush.com) who do men and ladies underwear... I recently spoke to a rep from there... They have some nice cotton pants with an inside pocket for the bag to sit in. In the UK, we can get up to 6 pairs a year on prescription, through your stoma nurse/G.P.

Please be careful with Imodium etc... I have been in the hospital 3 times this year with blockages (not nice). I don't take anything like that now... I can't lay on my tummy either and I miss that too...
I have a massive hernia all around my stoma now... and also need new hips due to arthritis after having U/Colitis for 20+ years....
I'm having a reversal and hernia repair in 6 weeks... and I'm told, if I'm well after that, maybe new hips in the new year...
I've been warned, if I become ill again with U/Colitis, then my colon is going to be removed.

It's always best to check with your stoma nurses before trying anything new. Everyone is plumbed differently...
It's been nice to read posts. I've been so lonely since I had my stoma, don't know anyone with a stoma.

This is for Lee, I've just read your last post, about a failed reversal... I would love to hear more if that's ok..... Got me a bit worried...
Maddy
Bedfordshire

I am scheduled for a reversal in early January, so I would be interested in hearing about failed reversals (and successful ones) as well. I have no large intestine and have an ileostomy.

Thanks a bunch. I will check with my GP - the surgeon does not know that I am on Lomitl - for some reason he would not prescribe it to me, so I went behind his back.

I'm guessing Lomitil is just Imodium? The GPs, sorry to say, don't know much, as well as the surgeons. Try to talk to a gastro consultant. Or you could try taking 16 a day yourself, guarantee it works. To the ladies who want to hear about reversals, with hindsight, I would not have had it done. All it gave me was two and a half years of hell. But if I hadn't, I would have always wondered. It's a personal choice, I suppose. But if anyone asked, I would not recommend it. Please ask any questions you like though.

Lee x

Hey Mooza, what is the gel stuff called and is it on the Australian scheme???

Thanks

Mark

Hey, Mark.

Hope you don't mind getting a partial answer from someone other than Mooza. Don't know a thing about Australia, other than the fact that they have some terrific bag people
there. While I don't use the stuff that absorbs liquid, turning it into a gel, I took a little stroll
through some catalogs (I really need to get a life) and found products from four different
companies. Surprisingly, none of the bigger companies (Hollister, Convatec, Coloplast, and
Genairex) had this product listed, although that doesn't necessarily mean they don't carry
it. The four that I found are:

Hope this helps.

Lee, Imodium and Lomotil are two different medications with the same outcome. When I
first came out of the hospital, I was supposed to take both of them, as well as Tylenol with
Codeine. Imodium is over the counter. I had a prescription for Lomotil, but I think you can
get it over the counter. If you have insurance, it's probably cheaper to get it with a
prescription.
Lalu

Hi Tess,

Just wondering how old your ileo is? Had mine in Dec 09 and the output has changed - when the volume occurs and how watery it is.

Tips: (1) Don't even consider tummy sleeping.
(2) The ostomy underwear is no better than a regular good fitting waist-high underpant.
(3) I am always hungry ... so stopping eating 4 to 5 hours before bed is not an option. I hit the sack about 11:30pm, have an alarm set for about 2:45am and then at 6am when hubby gets up for work. I find that I'm waking up just before the 2:45 alarm. Working well and yes, some may say "but your sleep is broken up" -- WAY better than it being broken up because I have to clean a bed and myself. I move around quite a bit while sleeping, so never tried the high output bag ... the idea of a bigger full bag moving and possibly being squished didn't appeal.
(4) To help solidify the output, you can pop a couple of mini marshmallows into the bag after you empty it. They work by eating them too. Or some chips as a late-night snack (eating, not into the bag).
(5) Cleaning out the bag after emptying ... I have a squirt bottle. I empty the pouch, squirt water, empty again, maybe repeat. Wipe and roll up. You do not want the water to reach your stoma.
(6) Deodorizer ... to me, poo is poo and I'm not too concerned about odor in the washroom. But sometimes after eating fish, some cheeses, eggs, I'll pop a couple of tic tacs into the bag.
(7) And finally, never 'burp' while laying down or partially laying down - ask me how I know.

Personally, I feel better when my output is more on the watery side. If it's too thick, I really feel clogged, more lethargic ... it's weird.

All the best,
Beatrice

Beatrice

I had the ileo done in November of last year - the output does not really change unless I have more than my litre and a half of fluid - the output never has a happy medium. It is either watery or like a thick tapioca pudding (sorry for those of you who like tapioca pudding, but really no better way to put it LOL) - I really do miss being able to drink like a human being. I was used to drinking gallons of fluid each and every day - oh well... The problem with the output is that as soon as I drink or eat anything, it just runs through me even with the meds.

Thanks for help.