Help Needed: Dealing with Ostomy Bag Leaks

Hi all,

New to this group, so please excuse me if I'm not following the format. I had my colon removed just over a year ago (Crohn's), and I am having constant issues with my ostomy bag leaking. Raw stuff leaking out that needs no description. I think you have all been through this. I have tried several different appliances, and I just can't seem to find a consistent, reliable solution. My wife, God love her, helped me change the bag on Thursday. Today, Sunday, I had a major blowout while eating at a diner. Humiliating, disgusting, and I could go on, but you get the point. Can anyone give me some advice on this? I'm carrying a “bail out bag” filled with clean clothes and replacement bags. I expect this will happen many times before I figure out a reliable solution. Any advice would be greatly appreciated.

Heavily depressed

Eric

Eric, you are correct. We all had that miserable blowout many times. I assume you have an ileostomy, by your description. I suggest a good ostomy nurse to help you wade through the maze of devices. If you have large flesh folds, the RN knows what works. After surgery, Mayo put me on Hollister, occasional leaks (6+ a year?). I prolapsed, and it got worse. My RN switched me to Convatec. Their wafers are tough, and no leaks in over two years. She is my lifesaver. I tried flying to S.D. last year, no leaks. Leaving for Tokyo in 4 weeks. Always carry my go bag!

Use flange extenders and a skin prep. The area must be dry.

I'm sorry, Eric. We've all had those blowouts; they're horrible and depressing, and controlling them is the key to moving on. I will ditto what's been mentioned - flange extenders, absolutely dry skin (use a hair blower on your skin on the cool setting and put your ring on immediately before your stoma gets wet again). Definitely use a barrier ring if you aren't using one yet; it prevents output from getting under the bag. Try a convex wafer bag instead of a flat one. An ostomy nurse or a rep from the company you get your supplies from can help, as can we. Hang in there!

For leaks... do you use a barrier ring? That might help with leaks. I've never had a blowout, so sorry I can't help you there. I hope I never have one either; sounds like a miserable situation.

Airport Security Tips Living with an Ostomy with April | Hollister

What's your normal duration for changing your stuff? Did you push it an extra day? Everyone has a different opinion on which brand of product to use, so you'll need to figure that part out for yourself. The basic concept for changing equipment is the same no matter what brand you choose. Flange extenders, belts, etc. can all help.

Talk with a stoma nurse. Also, be sure to wear a belt. Additionally, explain exactly what you are using and exactly what you do from start to finish when you change pouches.

I use Convatec 2PC system Natura with an Eakin cohesive ring #839002. I need to stretch it to fit my stoma. I change everything twice a week, and in well over a year, there have been no leaks. Terry

Hmmmm…. I see "flange extender" mentioned a few times…4 years in …don't even know what a flange extender is…shall Google but suspect it's for 2 piece…ostomy lingo has too many words to describe one item…bag, pouch, appliance, zip lock…kinda like the English language… I think I am almost ready for Ostomy 102…just need to pass the test for 101. 🤪….jb

Hi....I had a colostomy (just reversed at the end of May). I had very few problems until one day, and it was hell after that: leaking almost every day for a MONTH. I tried everything: using skin preps, then doing without; ensuring the skin was dry; warming up the ring and appliance; etc. Nothing worked until my nurse suggested that my stoma may be retracting (like at night, in secret, since I had never seen it do so), and that I might do better with a convex barrier. It worked! I used a barrier ring which I attached to the flange/barrier rather than to my skin. I had no leaks after that. (I used Coloplast, which offers 3 or 4 types. I was able to get samples of each to decide on the one suited best.) Good luck. I, like everyone, know how miserable & depressing it is.

JB.....flange extenders are those "C" shaped pieces of tape you put on over the edge of your barrier adhesive section. The idea is to keep the barrier edges from lifting. I'm not sure why people recommend them to stop leaks, but I wouldn't. Having output blow past your ring only to be stopped by the flange extender traps your output against your skin under your ring.........and if you think you're not leaking because the extender is holding it all in.........your skin is going to hate you for it. They're primarily for use when swimming......and that's about the only thing I'd use them for.

;O)

Hi Eric,

Sorry to hear about your leaking problem. You didn't tell us why you have leaks. You need to do a little investigating and figure out what's causing the leak. Don't just throw random products at it. Someone mentioned uneven skin. Is that what's causing the leaks? If you can't figure it out, you need to see an ostomy nurse who can. Remove your barrier before it leaks, and before you normally change it, and look at it closely. Is there any seepage anywhere? Pay attention to how well it's adhered to the skin around your stoma and look at how closely it hugs your stoma before you remove it completely. As you remove it, take note if there are areas that lift away easily (poor adhesion) and note where they are. Just take your time and record what you find because your ostomy nurse is going to ask you the exact same things. If you just show up at her office and say you're having leaks, but it's not leaking now, she's going to be as in the dark as we now are. So start by getting some good info for her to go on or even fix it yourself once you know what's going on.

;O)

Hey w30bob,

I've used the flange extenders since early in my journey, and in my experience, what they do is prevent blowouts (I had one in the first week and none since I started to use flange extenders). They literally do what they say on the tin; they extend the flange/baseplate and give the wearer more time to change the bag when a leak does happen, as when a leak begins, it starts under the original baseplate, and the wearer will know about it. By having the flange extenders, the wearer will give themselves some extra time to change the bag, as the leak rarely goes beyond the flange extenders.

I must say, in the two years that I have been using a stoma bag, having the flange extenders has given me a lot of confidence and has enabled me to do a lot of physical activities/tasks (hiking, swimming, yard work, etc.) without ever springing a leak. I credit this to the flange extenders.

Hi Eric,

I'm sorry you're going through this, but I'm sure you will find a solution that is perfect for you. Yours, unfortunately, was a situation that was near and dear to my heart for about six months. For some reason, I just couldn't get it right. I pored over articles and tried every appliance combo under the sun, but my damn body just wouldn't cooperate, and I was certain I'd have to live the rest of my life as a shut-in. Finally, I stumbled upon what worked for me. Never give up!

I have an ileostomy, and I noticed that even if my output was thin and watery, the pouch could almost tear away from my abdomen if it got heavy enough. I started draining it more often than I normally would, and that issue went away. I also found that tucking the pouch into my underwear kept it more secure against my body so it wasn't just hanging there with gravity constantly pulling it down. (Others wear belts to secure the appliance more snugly.)

If I had a really big meal at one sitting, that could really mess me up later, too, especially if it contained a lot of fiber or caused a thick, pasty output. Called "pancaking," it would build up around the stoma (instead of dropping down into the bag), and it would literally lift the whole appliance up and off my abdomen. This invariably happened at night when I was sleeping. When I started eating smaller portions more frequently and ensured that I drank enough water to stay hydrated, the output would return to normal.

I also tried a variety of flanges and found that the flat ones didn't work well with my parastomal hernia. The convex flanges are better for me, and with a separate seal underneath, I am leak-free. Even with frequent showering, I don't have to change the whole appliance more often than once a week.

You will get a lot of really useful information from the members of this group - much more detailed than the generic articles provided by ostomy supply companies. Again, don't give up ... you got this!

M

xo

Hi All

Thanks for the advice. It's crazy going from a “normal” life to having to deal with the ostomy bag. Crohn's is bad enough, but having to plan for a complete disaster is tough enough. I have a shoulder bag filled with replacement bags, supplies, and clean clothes. Even baby wipes. I've seen my ostomy nurse several times, working with different approaches trying to find a solution to this issue. It seems to always leak by the belly button. I have used the wide (1”) barrier strips. I feel like I have one of those 1970s record albums on my gut. Yesterday, I was just sitting on the couch, and I had a blowout. Just sitting there. I'm thinking about using duct tape. Maybe superglue. I'm at the point where I'm almost afraid to go out. Miserable. I used to be a very active cyclist. USCF CAT 2 for those in the know. Can't do that anymore with my backside sewn up. Afraid to scuba dive again. Basically feeling sorry for myself. I've got to get over this. I'm 57, and I'll have to deal with this until I die at around 130 or so. I appreciate all your advice, and I will continue using this forum for advice. And for those who race, use Campy. Shimano looks good, but Italian components rule. Just my advice. Never fails and looks beautiful.

Eric

Hi E,

I can relate. I got my surprise ostomy when I was 50 and went from a very active lifestyle to WTF overnight. BUT.......I'm right back to almost where I was, so we'll get you there. Let's start with your stoma. What does it look like...........meaning how far does it protrude from your skin and does it point straight out? When I got mine, they didn't do such a good job. Mine was pretty much even with my skin and shot to the right. So it was basically spraying right into where the barrier or ring was contacting my skin. Needless to say, I had a lot of trouble with leakage...........but didn't know my stoma was in any way "not correct." I also had some issues with the skin directly in contact with my stoma reacting badly to it. I'll spare you the details, but it just made things worse. I always kept wondering why my stoma didn't look like the pics of the cute little rosebud that you find online..........but again didn't think mine was as wrong as it was.......and none of the docs or nurses told me. I was at where you are now........always fearing a blowout.........keeping supplies nearby all the time.......it wasn't fun. My stoma finally kinked after 11 or 12 years of that crap, and I had to stick a stainless steel rod in my stoma a couple of times a day to unkink it and let it output. Once I got it revised, ALL my problems disappeared. And I mean like overnight! Now I have to write down when I change my barrier or I'll forget to change it every 4 or 5 days like I should, and I don't even consider leaks anymore. Not saying your stoma is like mine was........but many on here are fighting a losing battle with sub-optimal stomas and just need to bite the bullet and get it corrected. So tell us what your stoma looks like and we'll go from there.

;O)

Thanks, A rose by any other name…. Hope I'll be able to pass the test for Ostomy College Knowledge 202.

As a side note, I don't use them as I agree - a trapped leak would make one's skin scream! For me, I thought they might be good for additional pouch stickability since I loathe a hernia belt and tend to support the gear with corrective underoos. For example, I might use them for an airplane flight. Also, they are great for reducing those frown lines between my eyebrows, tho!!! 😉 jb

Gotta love it when you can use ostomy supplies for multitasking!!

;O)

What Convatec barrier ring and pouch do you use?

Thanks