Need help with nighttime bag changes - any suggestions?

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Loki
Jul 28, 2020 2:31 am

Hi everyone.

Well, it's 03:22 am again and I am up as I had to do a bag change at about 2:45 am. It is a regular thing despite all the things I have tried to make it not happen. (I am the sort of person that once I am awake and up, I find it hard to settle again.)

I have had my colostomy since January but can't seem to stop the night changes. I have tried changing eating habits - eating earlier, eating later, different foods, etc. I have also tried taking laxatives and Imodium (not at the same time).

Does anyone have any suggestions as I am getting so tired during the day? I have usually been up 4 hours before I even start work.

Cplumber
Jul 28, 2020 3:57 am

Wear an ostomy belt all night. You can cinch it up as snug as you need. If you go on Amazon and search ostomy belts, it shows a bunch of different kinds. They're usually covered through your insurance if you give the product number to your ostomy product supplier.

Good luck

Cplumber

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Immarsh
Jul 28, 2020 7:02 am

Hi, I have an ileostomy that runs all the time, so I'm often up at night to empty. If not, I'll have a leak, or worse a blowout. Due to some digestive issues, I often have very loose watery stool, which can get under the wafer and eat away at it....hence leaks at any time of the day... But when the output is "normal", I wear the pouch/wafer system for 5-7 days... But things can be quite different with a colostomy. The more large intestine you have, the less water, and the more your bowel can store stool. Many people find that irrigating once a day helps regulate them, so they don't have to worry about unexpected movement. If you irrigate at night....after dinner, (there is specific equipment, pouch for water, syringe, and even a pump) the water stays in you for about an hour. and then the bowel will empty itself into a pouch. Once you dispose of the waste and clean up, you can wear a small square pouch....and if all goes well, you don't have movement or have to empty until the next day/night... It sounds like it's time-consuming, but people who use this management system feel that it frees them up, and they're not tied to the bathroom or have unexpected blowouts....too often. Best of luck..

Marsha

Bill
Jul 28, 2020 8:32 am

Hello Loki.

Sorry to hear about your problems. You tell us that you have a colostomy, so I feel obliged to point you towards exploring the technique of irrigation. It doesn't suit everybody, but if it can work for you it may well resolve the issues that are troubling you at present. This procedure allows us to 'flush' out our ouput all in one go and then we are 'free' for however long it takes for the system to refill. (Up to 2-3 days for some people.  I irrigate everyday and find that this is the most 'convenient' way to manage stoma output. 

Also, an irrigation sleeve can be folded up to make a very large 'bag' for overnight purposes if that feels necessary. 

Best wishes

Bill

Puppyluv56
Jul 28, 2020 11:41 am

Hey,

I too am a big advocate of irrigation. You may be a candidate to irrigate as well. You can look it up on YouTube and possibly ask your colorectal surgeon or ostomy care nurse if you are a candidate. Since your surgery was in January, you should be at a point now where it would be okay to start irrigation. They usually want you to wait 4 to 6 months after surgery for healing. It sure makes your life so much easier, just irrigate every day or every other day and have no output in between irrigations. It allows you to get back to living. If you're interested and have any questions about it, be sure to ask. There are many of us who have a colostomy on the site that do irrigate and we're all glad to help.
puppyluv

 

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Past Member
Jul 28, 2020 2:20 pm

Loki, why are you needing to change your bag at night? Is leaking a problem? Is your diet a factor? Trying to figure out what is going on with your bowels requires a bit of detective work. It takes a long time for your bowels to settle down after surgery - I mean years. But, it is possible to figure out how to manage them while they are adjusting to the shock of surgery.

First, I would keep track of exactly what you are eating, and see if you can spot a pattern. Are things worse on the days that you eat certain foods? Sometimes, the consequences of certain foods won't be seen for 2 days, so even more reason to keep a record. I find that my output is much higher if my fiber intake is high. And certain foods, like popcorn, can make it even higher.

Second, you mention taking Imodium as well as laxatives. That might be the culprit right there. It generally takes several hours for those meds to take effect, so I wonder if you're overdoing it on one, and then trying to compensate with the other. It might be worthwhile to go off the meds, and then gradually add the Imodium, to see if you can regulate your bowels better, using less, or just one of the 2 meds. This will be inconvenient, but it might help you find a better protocol. Even marshmallows (really!) can help thicken output. Again, don't overdo the marshmallows. Start with 2, in the morning.

Third, are you a beer drinker? I find that beer affects my bowels significantly, whereas wine and spirits don't. It's hard to turn down a pint of Guinness, but sometimes I have to choose the Merlot instead. Sigh.

Fourth, are you wearing the right appliance? Ostomy equipment companies are great at sending free samples - try them all, and see which one you like best. Are you wearing a convex flange? If not, try it - I didn't think I needed a convex flange, but as soon as I started wearing a flange with light convexity, my leaks stopped entirely.

And finally, as others have mentioned, irrigation may give you some freedom. If you have a colostomy, you are likely a candidate for it. Check the archives on this site for information, and there are plenty of YouTube videos as well. I don't irrigate very often, but if I am going out for the evening, I do. I know I will have the entire evening, and the next day free of bowel interruptions.

Apart from your ostomy issue is your sleep deprivation. See if you can find someone to help you with guided meditation for relaxation. Using this, you can actually train yourself to go back to sleep after you've had to get up in the middle of the night. It takes awhile to get the hang of it, but I use it all the time, (for myself as well as therapy clients) and it works. The more boring the guided meditation, the faster it will put you to sleep, so when you find one you like, don't switch it because it has become boring. You want boring.

Best to run all of these suggestions by your ostomy nurse, Loki. Of course, you can also talk to your surgeon, but I generally find that surgeons don't know anything about stoma management. But I'll bet you a pint (or a glass of Merlot) that your ostomy nurse will. Good luck.

Laurie

Shitt Happens
Jul 28, 2020 6:49 pm

Have you ever thought about irrigating your stoma every day?

I haven't worn a bag for 2 years now.

If your enterostomal therapist tells you that you are eligible,

Write to me if you want to know more about irrigation :)

Regards

Danielle

Past Member
Jul 28, 2020 7:02 pm

As you have a colostomy, is it possible to irrigate? Not everyone can, and some prefer not to, but it's an option to discuss with your stoma nurse/consultant if you haven't done already. Output can be affected by the reasons you had a colostomy for and the meds you take. I have an ileo, so I know very little about colostomies. I have read many times some do have a high output. Your stoma nurse will be able to say why yours is a higher output. Leave the laxatives well alone, only take if needed and advised to by a doctor/nurse.

w30bob
Jul 29, 2020 1:33 am

Hi Loki,

I'm still not sure I understand your circumstance. When you say you have to "change your bag," do you mean you use the type of bag that cannot be emptied, or are you saying your barrier has a leak and you need to do a barrier change? If you mean the former, then putting on an irrigation sleeve, as Bill suggested, before you go to bed would be the answer. That assumes you use a 2-piece barrier bag combo. If you use a one piece, you could simply switch to a 2 piece and use the irrigation sleeve as I just mentioned. If you mean you have a leak and need to change your barrier, I'm assuming it's because your bag has filled beyond capacity and you blow out the barrier seal around your stoma. The irrigation sleeve would also fix this problem. And the last option would be you mean your barrier seal blows out and you have a leak, but not because your bag is full beyond full. If you could just clarify a bit, I think everyone could focus on your specific issue just a tad better. The good news is the first 3 cases are easy to fix. The 4th one is the toughest one.

Thanks,

Bob

Past Member
Jul 29, 2020 1:57 am

An irrigation sleeve is enormous, and still requires a flange and a belt to keep it in place. Even with all of that, the seal is not very good - I would not want to sleep using that arrangement. The likelihood of waking up to a big mess in the middle of the night is more likely than not.

Laurie

Loki
Jul 29, 2020 6:00 am

Hi Bob 

I use a one-piece bag that sticks straight onto the skin and is sealed, so it can't be emptied. I also have some bags that can be emptied, which I have tried to use at night. However, I still have to get up to empty it, and then I can get back to sleep as I feel unclean. So far, I have only had 2 blowouts due to being full, as I am constantly waking to check (subconsciously), which again is affecting the quality of my sleep. 

I am still trying to get my head around everything. I know it has been 7 months now, but I am still struggling to come to terms with it all, and the lack of sleep makes everything else seem 10 times worse. 

Thanks. 

Paul

w30bob
Jul 29, 2020 6:32 am

Hi Paul,

Thanks for clarifying. Taking Pad's comments above into account, I Googled "Irrigation Sleeve" to look at how they attach. I can't speak for all of them, but the Hollister sleeve uses the same flange as the regular Hollister bags I use every day......and I always wear a belt, which the Hollister sleeve has provisions for. So if you use Hollister now, you could switch to a 2-piece barrier/bag......then at night substitute the irrigation sleeve for the normal bag and you should be able to sleep without having to get up at all. I'm going to get some myself because there are some nights I'd like to get more than 2 hours of sleep. Maybe I'm missing something with respect to Pad's comments.......but I'm curious enough to check it out for my own use.

Regards,

Bob

Past Member
Jul 29, 2020 12:25 pm

The Hollister irrigation sleeve (that's the one I use for irrigation) does not attach to the flange. It is held in place only by the belt, and fits around the flange, but does not stick to it, which means it is open. The sleeve opening closest to the stoma is a fold down twist tie. There simply is not enough room above the stoma to fold the plastic over the twist tie enough to make it watertight. This is not a secure system! It is meant for irrigation, to be monitored when one is awake, standing or sitting, and actively watching for output. It is not meant to be used when one is lying down, and especially not when one is asleep, as there is no reliable seal. The bottom of the sleeve is entirely open, with a separate clamp that can be temporarily used whilst being watchful - it is something that could open when jostled, as in rolling over while sleeping. Bob, you don't use the irrigation sleeve yourself, as you have said. Please don't assume, without any experience, that it is a solution. It definitely isn't.

Laurie

Past Member
Jul 29, 2020 1:16 pm

Loki, if the issue is that you feel unclean when you have output during the night, your best bet is to pursue irrigation. You are likely a good candidate because you have a colostomy. If you irrigate in the evening, you will be able to sleep soundly all night knowing that you won't have any output. The issue of feeling unclean when we have stool hanging off us is an issue that every ostomate has to come to terms with. Some ostomates have more trouble with this than others, but ultimately, we are all individuals, so we will all have a unique way of coping. You are fortunate to likely have the option of irrigation. It will take several attempts to get it down pat, but you will get there. Again, best to check with your ostomy nurse, but also watch the YouTube videos - they are very helpful. I feel after your last post that this would probably be your best option.  

Laurie

Past Member
Jul 30, 2020 2:48 am

Hollister has a new irrigation sleeve, with a click system that can attach to the corresponding flange. This is an improvement on the irrigation sleeve that I have been using. However, it still has a twist tie closing at the top of the sleeve near the stoma, and the same insecure clamp for the bottom of the sleeve. Even with the improvement, I would not consider sleeping with this system. It is meant for irrigation while standing or sitting, not lying down, and not meant for use while sleeping.

Laurie

w30bob
Jul 30, 2020 1:32 pm

Hi Laurie,

Ah.....I see what you're saying.  You'd know better than me.........I'm just looking at a pic online.  Thanks for clarifying.  I know I've also seen some bigger bags....not as big as an irrigation sleeve, but bigger than the standard Hollister bag.  I think we talked about this awhile back.  If anyone remembers who makes the bigger bag......could be Hollister........please let us (and Loki) know.  Obviously irrigation sounds like the simplest solution, but if he can't do that (for whatever reason) I'd think switching to an empty-able bag, and then using the biggest bag at night, would be the next best thing.  I'm a little jammed up with shit to do right now Paul, but if I get some free time I'll do some digging to see if I can find that bigger bag info.    

Regards,

Bob

Loki
Jul 30, 2020 7:44 pm

Hi Bob 

I have been in touch with my supplier, Coloplast Charter. I use SenaSura Mino bags and they do a high output night bag (thanks for pointing me in the right direction; I get so overwhelmed sometimes I don't think straight). I get my products for free through the NHS, so I will order some samples to see what they are like.

I have attached a YouTube video link. See what you think https://youtu.be/vwNBFrfrLvc

Thanks 

Paul 

nal143
Jul 30, 2020 9:00 pm

Hi Loki, I feel your pain and frustration. The first year has the steepest learning curve! From what you are describing, my first thought is you do not have an adequate appliance. You should not have to change your bag during the night...empty, maybe...but not change the whole thing. Check with your supplier to request something with a sturdier barrier and a bag that can be emptied. There are tons of different options out there and you may need to request free samples from different manufacturers to see what works best for you. You will find something that works better than what you have now. Best of luck to you and sweet dreams soon!

w30bob
Jul 31, 2020 3:23 am

Hi Paul. Yes! That's the video I saw, but forgot about!!!  That puppy should help you out... I'm glad you found it and are getting some samples. Let us know how it works out!

Regards,

Bob