New Ostomate Seeking Advice on Nighttime Leaks and Ballooning

I'm scheduled for surgery on May 30th that will leave me with a loop ileostomy. I'm trying to prepare in advance by learning as much as possible from folks' experiences here and elsewhere on the internet. I have rectal cancer and have already been through 5 weeks of radiation therapy and 6 weeks of chemotherapy, so mentally I look at this as just another step on my road to beating cancer. I also fully recognize that each of us will have slightly different experiences, so what is true for some may or may not be true in my situation. Anyways, to the point of this post . . .

My biggest concerns both surround nighttime. I'm concerned about leaks and ballooning. Obviously, I'll need to test products for myself, but at the moment I'm leaning towards trying a Coloplast SenSura Mio 1 piece. The hospital I'm going to will send me home with a Hollister 2 piece.

Question:

Has anyone here tried either product that can say whether either of these filters actually do what they claim?

Does anyone here use the Coloplast SenSura Mio and hasn't had a leak?

On the Coloplast website, they make this claim:

"Have you ever had problems with your ostomy pouch ballooning? The new full-circle filter has a unique pre-filter that is designed to reduce this problem.

The job of the pre-filter is to protect the carbon and membrane, as those two parts are very vulnerable to faeces. Therefore, the full-circle filter clogs less frequently, so the airflow through the filter lasts longer and you experience reduced ballooning.
Actually, the full-circle filter has proven to reduce ballooning by up to 61%. (1) The full-circle filter will improve discretion and help you sleep better at night."

Thanks in advance for any advice :)

Joe in NY
 

I use a Hollister 2-piece with a filter. If you stand up straight, it will work, but if you are laying down, the first bit of output and the filter is done.

Hey Joe, a fellow NYer here. You have a great outlook on your journey, I know that will help you through the whole process. Regarding the Sensura Mio, I tried a sample and wasn't happy with the fact that it's shorter than my Hollister bag. I mean, it was really short. You might just want a bag that's a bit bigger, that will hold more at night. I'm sure the Mio folks on here will share their experiences with you to help with your decision. Whichever bag you settle on, I'd recommend a convex wafer - it helps a lot in preventing leaking. I'm a side sleeper and don't get leaks at night. I've also gotten quite good at gently burping my bag at 3 a.m. which prevents me from having to actually get out of bed.

~Lori in NY 😊

Hello,

I use the Hollister 2-piece system. I like the fact I can snap off a soiled bag and snap in a new one in less than a minute. Handy if you're pressed for time. Hollister bags can hold a lot of output. The Velcro drain closure is pretty reliable. I use a small paper binder clip to keep the Velcro from suddenly popping open when I have a fairly full bag. This was thought up by Ostemate IGGIE. I put one clip in the middle of the closure. You can put one at each end to help prevent liquid leaks. You secure the Velcro, roll it up one time, attach the clip, and fold down the wire handles. I also use a Coloplast Brava moldable ring.

So, the moldable ring is fitted around your stoma and stuck to your skin. The wafer is then installed onto your stoma. The bag is then snapped onto the wafer. I have a colostomy, so I don't have any leaks due to thick output.

Ileostomy has watery output that is caustic to the skin. So preventing leaks is a challenge. The hospital will teach you how to change your ostomy setup, but not how to care for your ostomy over time. And that, you learn from websites like this. From the Ostomy Warriors who have "been there, done that."

Let us know your progress.

Joe, it is good to see you learning as much about the ostomy as you can. You may be a bit hasty in trying to determine what product you would like to use. Factors in determining appliances are the size of your stoma, the location of your stoma, the height of your stoma, and where on the liquid-solid range your output falls. Your anatomy is also a variable, whether it has prominent rolls or creases, whether your stomach is round or flat. Without knowing any of this, trying to assess appliances is sheer folly.

I would not so quickly dispense with the appliance the hospital sent you home with because that will be the appliance they have taught you to use. If you are able to manage that appliance, then it is easier to experiment because you can always go back to it before trying something else—this way your skin does not get irritated. After surgery, you will be very sore and still with stitches. Try to focus most of your effort on learning to manage your appliance in the hospital.

You seem very interested in filters, but filters are a very mixed bag. I assume you are interested in filters to release gas. I have had filters that clogged and became useless, filters that released odors, filters that caused clothing stains. I even had an appliance with a very good filter, but it released all the gas out of the pouch causing pancaking. If you have semi-solid to solid output, you need some gas in your bag to prevent pancaking. If you have liquid output, then pancaking may not be a problem, but the filter may not be as effective with liquid output. Gas may be the reason the hospital sends you home with a two-piece appliance. Burping your bag to get rid of gas is easier with a two-piece. You may find you prefer a closed pouch rather than an open pouch. But that is more feasible with a colostomy than an ileostomy—if you are only having to empty your pouch 2-3 times per day, insurance will provide 60 closed pouches per month.

With the knowledge you have acquired via your research, talk to the nurses that are managing your stoma to get as many tips as you can from them along with what appliances they prefer and if the appliance will work for you. I have a feeling you will excel at managing your stoma because you are already embracing the challenge, and that is the key to having a very active life with a stoma.

Stories of Living Life to the Fullest from Ostomy Advocates I Hollister

Wow, just wow. Thank you, everybody, for the fantastic info. Very, very thoughtful and helpful, everyone.

I'm super impressed with how active this community is compared to other websites I found first. Thanks again!

Add-on questions:

Has anyone tried a StomaCloak? https://stomacloak.com/shop

I'm concerned that showering will leave the appliance too moist, so I was intending to try using a 7x7 Shower Shield. https://www.showershield.net/products/7x7-wound-catheter-cover Does anyone do anything like that, or is it likely a waste of effort?

Stoma cloak might be useful. It really would be a personal choice.

I bought a bunch of different colored bag covers. Never have used them, only tried one on. For me, it was a hassle fitting the cover over my bag. Then I had to move the cover around so I could see my bag. You have to view your bag occasionally to see what's going on in there.

I have a colostomy. From time to time I have to "rearrange" output. My stoma faces to the right, so the bag fills up on that side. Throughout the day, I evenly redistribute output so the bag lays flat, otherwise I end up with a lopsided bag.

For me, there's no sensation when output is released through my stoma. As a result, the bag can get very full without me knowing it. I don't sense the weight either because I use a Hollister bag retention belt. So, I peek at my bag from time to time. Also reach under my shirt and feel it. The bag cover got in the way, making it hard for me to monitor the bag. Also made it hard to burp the bag. Something I do all the time. Bag filters don't last too long due to moisture. So, ya gotta burp. Which I can do without looking.

I visited my dermatologist yesterday. She knows I have the ostomy. Doesn't bother her or the staff. I just snap on a new bag before I go, no need to put on a bag cover.

Intimacy: Snap on a new bag, fold bag bottom up, use 2 small binder clips, (IGGIE clips), to clip bag bottom to top of the bag at each side. Now the bag is stable, out of the way, and you can't see through it because the back of the bag has a material cover.

I shower with the bag on. No need to cover it, wafer and adhesive are waterproof. After drying off and using a hair dryer (set on low) to dry the bag, you're good to go. The wafer fabric tape might lift at the edges, use Hypa-Fix tape to secure it back down. (Available on Amazon). Hypa-Fix tape sticks well without tearing up your skin.

Use soap containing no fragrance, lotions, or dyes. These chemicals will interfere with wafer adhesive. I use Cetaphil soap.

You can shower "naked"... everything off. Just your stoma sticking out. Bring a cup in the shower to catch output. Bring several paper towels in too. Water and proper soap will not hurt your stoma. Be careful you don't drop the soap on your stoma. When shampooing/conditioning hair, face the shower and bend toward it so shampoo/conditioner doesn't run down your chest and around your stoma. Be careful when drying off, a towel edge doesn't rub your stoma, it will bleed. I pat the skin dry around the stoma with paper towels. Never use toilet paper on your stoma, wet paper towel only to remove poop bits.

I installed grab bars in my shower. I always keep a firm hand on a bar when moving around. You don't want to wipe out and fall.

Note: Changing the wafer too much will tear up your peristomal skin. Experiment to discover your change interval. I recently went 10 days to see what would happen. My skin looked great, just had more hair growth. Bear in mind I have a colostomy. Ileostomy will be different due to more liquid output.

G-Day Sunvox, Something that would help you before your operation if you have a lot of hair around where the stoma will be is to get it professionally and permanently removed. You will thank me later if you do. You don't need a StomaCloak; it's just extra stuff that gets in the way. And as a bit of advice, go for a two-piece convex Hollister. They have a good setup, and it has been a lifesaver for me. Good luck. Regards, IGGIE

Hi

Welcome to the site first of all. I used Sensura Mio and unfortunately, I had issues with the pancaking. Tried Hollister but wasn't keen on the feeling of the material. Good luck 🍀 xx

Hi,

I have a loop ileostomy that is not going to be reversed due to nerve damage in my large intestine.

I was put in a Hollister system in the hospital and hated it. For me, it's very loud and sounds like you are walking around in a diaper, lol. I also had issues with the adhesive causing skin irritation. I also found that with any output, it hung off of me like a rock in a wet garbage bag. I didn't like the Velcro closure and found that the tail was smaller and never stayed folded up. The fabric cover on the bag doesn't wear well, and I found that I sweated a lot under the bag due to the stuff it's made of. The ring is very stiff on the two-piece as well.

I tried a bunch of samples and settled on the Sensura Mio 2-piece click system, which I love. The fabric cover is nice, and the bag holds its shape on your body even as it fills without needing a wrap or belt system to keep it in place. The bag is smaller than Hollister, but I prefer it as it doesn't hang down as far and is more easily covered by regular-length shirts. The opening is a bit wider on the neck (don't go for the ones labeled 'ileostomy bag' as they are narrow and don't have the Velcro to fold back when you empty) with Velcro to hold the flap back when you empty. I use the Hollister barrier ring as well as the extra strips on the outside of the flange as I spend a lot of time in the hot tub and have a large hernia. I get between 5-7 days between changes and have gone as long as 14.

You can get leaks with any pouching system; a lot will depend on your stoma, what kind of output you have, etc., and what kind of skin prep you do before applying. I found that my output was much higher and more liquid over the first 8 weeks after surgery but then settled down. At first, I did have to wake myself up at night at least once to empty no matter what system I was using. Now, a year later, I usually empty before bed and then again around 4:30 am when I have to get up to go pee anyway. Sometimes I don't need to empty at night at all. You kind of get used to checking how it feels in your sleep. The ballooning slows down after a bit as well, and I don't have any issues with it now.

As for showering, I never need to cover things when I shower. The Sensura Mio dries out fairly quickly, and I pat things dry with a towel.

Good luck!!

Not so sure how well the shower shield would work for an ostomy appliance — from what I can tell from their site, it was not created with ostomy appliances in mind. If your stomach is reasonably flat, you may want to try a StomaGoggle.

https://www.stomagoggle.com/

G'day Sunvox, if you want to shower with your bag off, I have made this very simple to make shower guard. It consists of the fitting on the Hollister bag and a simple plastic cup you can find in a hardware shop. I wear it when I leave the shower and before getting in, so no mess on the bathroom floor. As you can see, you can use different side caps to be the one that's right for you.

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Hi again Joe, As you can see from all your responses, there are so many products and combinations of them, and so many variables from person to person, that what works really well for one person will be a disaster for another. That is why it's so hard to recommend one product or system. I will just stress that you owe it to yourself to try lots of different products and combinations. Finding what works well for you can improve your quality of life big time. I have an ileostomy and found that I can't get a Coloplast product to stay on me for more than 3-4 days no matter what. I tried lots of different systems and settled on a Hollister pouch with a Salts aloe barrier ring, and I get 7-8 days wear time and haven't had a leak in a couple of years. My opinion of filters is that they are useless, but that's just my experience. For me, the filter just gets clogged up and in fact, I've had leaks come through the filter, which isn't supposed to happen, but does. My particular pouch only comes with a filter, so I put a piece of waterproof tape over the filter and just burp my pouch as needed. Good luck on your journey!

Terry

Thanks! That seems like a much better solution than sticky paper every time. I'll definitely give it a try.

You are so right. I will definitely need to experiment. Another one of my concerns is that I have a fairly hairy abdomen and laser surgery to permanently remove the hair is out of the question now as it's too close to my surgery date of May 30th, and I see online that some men experience irritation due to frequent shaving. I'm guessing it also means I'll need to change my appliance relatively often to keep the hair growth from interfering with the barrier. I expect burping my bag will become a habit for me as well. On a positive note, I already was getting up 1 or 2 times a night to pee as radiation therapy has impacted my bladder behavior, so I should have less trouble keeping my bag drained at night.

It will definitely be a learning journey, and I'm so glad to have found this resource.

Thank you again everyone!!

Hey Sunvox, 

I'm a rectal cancer survivor, well, 3 months NED. I went through the 28 rounds of radiation with oral chemo, followed by 12, 48-hour Folfox chemo infusions. One microwave ablation to my left lung. Then the tumor removal. I was referred from my surgeon to another hospital, to the head of the gastrointestinal department. 

The thought was that my tumor was very low and had not completely responded to treatment but could possibly be removed without impacting sphincter muscles. My doc, however, was very adamant that I would suffer from LARS. I already deal with a bit of LARS from a previous intestinal operation. I also did not handle even the minor operation like the ablation. Put me in the hospital for 2 weeks. Anyway, it turned out that I was not able to save my sphincter muscles, so I have a permanent colostomy and a Ken Butt. Honestly, I told the doc, make me cancer-free, if that means a bag, so be it.

Like everyone here, I recommend trying different products. My surgery ended up putting me in the hospital for almost a month. Boy, my body does not like being opened up.

I was finally sent home with Convatec two-piece, transparent bags. I instantly wanted a bag I didn't have to see poo.... lol. I ordered several different samples from different companies. They are awesome to send this. I am still experimenting to find "my" bag. 

I use two. I use Coloplast one and two-piece SenSura Mio, Click on the 2 piece. Currently gonna try the flip flange. Also, the bags are gray (black bags coming next month) or the Convatec two-piece systems. I use both to alternate the baseplate and skin it attaches to. 

Your ileostomy will be a bit different than my colostomy. However, I still have LARS, so I need to take medicine every day to reduce bile. If I don't take it, I have liquid output like an ileostomy. If I do take it, my output is solid, and I deal with pancaking. Because of that, when I use the Coloplast bags, I cover the filters. They tend to cause a vacuum in the bag, which does not help my pancaking problem. I also shower with my bag on. If it's a 2 piece, I take it off after to either replace or clean and dry it. A one-piece I use my blow dryer on low to dry. Not sure if that is right or wrong, but it's what I do.

Um, I've rambled here a bit, sorry. I do want you to know you're not alone, my friend. 

T

Thanks for the input, T!

I'm so sorry to hear about your tough times with surgery. I know that is an issue for many. I'm counting myself quite fortunate in that my tumor is mid-level, so ileostomy reversal should be an option. Of course, I'm not looking forward to the potential of dealing with LARS. I've even found stories online of people who opted for a permanent colostomy versus dealing with LARS. I guess I'll cross that bridge if it comes.

I fully expect to be like you and try different bags to find what I like best. The great thing about this website is the ability to read about others' experiences, so at a minimum, one knows what to look out for. As an example, I do expect to at least try the Sensura Mio, but I'll be curious to see if I experience adhesion issues as some here have mentioned.

Is the area around your stoma hairy, and if so, have you experienced any issues with irritation or adhesion?

I've only had one blowout and one leak. Both were likely my fault. The blowout was when I had a liquid output and the bag was super, super full at night. I rolled over and popped the bag off the flange. The leak was likely because I installed it slightly wrong.

Everyone is different with LARS. Hopefully, you will not have an issue. On the bright side, you will have options, unlike me. But, I'm 60 now, and I don't need to go to a different room to do a number 2. Haha. I tend to change my bag every 4th day. I have the bags, and that seems to be how long I can go without any skin issues.

Sunvox, never tried a Stomacloak but for a while I did use Glad Press 'N Seal with and without tape on the border. It kept everything 80% dry. That was on the rare occasion that I had to shower with my bag on, if I was away from home or coming out of a pool.

I use a pubic hair electric shaver. I was using a regular electric shaver, but it irritated/pulled my skin. The pubic shaver is gentle but does not cut hair very close to skin level. But good enough. After shaving, I use a small precision scissor to carefully cut random hairs near the stoma.

I've found I don't need to have a close shave. Hair stubble doesn't interfere with my wafer adhesion. Bear in mind, I have a colostomy. Ileostomy might be different.

Electric shaver I use: MERIDIAN Original Bikini Trimmer. Available on Amazon.

Liked it so much I bought two. One red one, one blue one. I use the red one to shave my face and neck. My neck has surgical scar tissue, with the entire left side numb from nerve damage. So I gotta be careful I don't press too hard or damage the skin.

I shower with my bag on. If it's change day, all the better. If not, I use my blow dryer to dry the bag. If it's a 2-piece, I remove the bag to clean and dry.

I purchased a Philips OneBlade intimate razor. It was inexpensive and does the job perfectly.

On another note, I bought a spray hose that attaches to my toilet. Having a colostomy, it helps to have water to rinse the bag when I empty. Not to mention, it helps clean the bowl as well.

Love it! Would never have thought about that, but the fact is I had an issue with painful skin irritation around my anus after radiation therapy and bought a handheld bidet which just now I'm realizing might be helpful in rinsing out my bag. Certainly worth a try once I have all the other basic elements of life with a bag ironed out. Thanks!

I developed a problem with ballooning and pancaking at night early on with the SenSura Mio, and later with the Assura One-Click. The pouch boxes come with a sheet of stickers. If you put a sticker over the filter, it prevents all the air in the pouch from leaving, so output can move down the pouch at night. Without the sticker, the sides of the pouch are sucked together as the air is filtered out, and the result is the output has nowhere to go. It isn't a perfect fix: when my output is thick, it does stay at the top and pancake.

I have the same issue with the SenSura Mio bags. Like you, I place a sticker over the filter to prevent the vacuum effect.

Hi and best wishes with your surgery. I'm 19 months out with a permanent ileostomy; the entire colon is gone due to a mishap during lower back surgery. I tried the Coloplast bags and got a severe infection due to the thinness of the interior lining causing pancaking. I don't mind the 2-piece Hollister pouches, but find they stick out of my clothing more than the 1-piece unit. I change my bag every 4 days and use the Hollister deodorizing/lubricating packets twice a day. I've had zero issues with leaking, but if you are leery I agree with others here with using a small clamp on the end of the tail. As far as ballooning goes at bedtime, if you lay on your side and the vent blocks, you may experience this issue. I have never heard of back sleeping all night because it very well can lead to severe pancaking and possibly infection. I set my alarm so that I can get up in the middle of the night to avoid all of these issues. I have found that the Hollister 2-piece units are great when on vacation. Wishing you well and hoping you find the products that work best for you. Both of these companies do mail out samples if you call them.

I also use a light blow-drying on my bag after showering. Then I take a large washcloth and wrap it around my bag while I am sitting and having my coffee in order to dry it pretty completely. Good luck to you!!

I do sleep on my back at night, but my back is elevated at about a 40-degree angle so output can still fall in the pouch. I was never a back sleeper, but after 3 months in the hospital sleeping on my back, I am comfortable sleeping on my back now. I stay away from gassy foods unless it's early in the day.

I just dry my pouch and flange edges with my towel after showering.