Pancaking issues with ileostomy - seeking advice and support

I've new here. Ileostomy for 2 years. I have a spinal AVM and bilateral nephrostomy tubes. With the spinal issue, I have no muscle control at my waist/bladder. Incontinence. Pancaking is a big issue. I'm looking for advice on what has worked and not worked for people regarding this. My stoma has gotten longer and wider over time yet it works normally. My home health nurse, who comes every 3 days, helps change 2 pieces every 2-3 days. I can't get more than 3 days due to breakdown of wafer from high output. Needless to say, I'm a 58-year-old mess who's looking for support and someone to discuss my issues with who can relate to what I'm dealing with. The nephrostomy tubes are a whole different story for a different day. THANK YOU TO WHOEVER READS THIS AND REPLIES...I used to be an avid amateur golfer and physically fit. Now I'm retired and learning a whole new life.....this pancaking is hurting me a lot!!!!

Hey there.. I'm sorry. I just had to get mine revised. Got a whole new doctor; the last one didn't do my ileo right.. The pancaking, I will put a little air in the bag for me when I pancake has helped the most. A lot depends on what I eat too. What type of appliance do you use?

OMG, thank you for replying. I never thought I'd get a reply. I use a SenSura Mio from Coloplast. I have used it for 2 years. I'll try anything regarding the pancaking, so I'm gonna try your air in the bag effect... thanks again!!!

We all need to stick together and be here for each other. And with the air, don't do a lot of air, just enough to give the stoma a little breathing room. Do you use a filter? I use Coloplast too, the same one. Let me know if it helps you out.

Have you put lubricant in the bag?

Good day,

I too have had an ileostomy for just over two years. I play golf but am not a golfer. I also use the Sensura Mio. I wear a diagonal support belt which leads to occasional pancaking. After so long, I've come to feel when my discharge is coming out thick. I've become a "belly petter" lately and found this helps. Brushing my hand over my pouch helps keep the discharge moving. It takes a little practice. I at least think no one notices.

All the best to you. This is a great site. Keep the questions coming. You're not alone.

SharkFan
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I've had my ileostomy for 2 years as well and only have occasional pancaking. Drinking a good old cup of hot coffee flows through almost immediately. Good advice from all who have previously commented and I have done all of the above at one time or another over the last two years.
Sorry you are having issues. Sending positive thoughts your way!

The few times I've tried the Sensura Mio, I also get a lot of pancaking, particularly around that weird to me, bubble wrap-esque ring. That leads to me fiddling with it and the whole 2-piece failing in less than 2 days, and then back to Hollister :( Any other pancaking experienced usually is due to me shying away from water and having more sugary drinks. When I switch back to all water, it tends to stop happening as much and as often. Sorry, I'm not much more help.

Hi Jalrein, sorry you're having this issue. It's hard to have to accept a new "us." All of us on here understand this on some level. Ditto to what the others suggested. It sounds like loosening up your output is indicated and decaf coffee does that for me. Bananas are killer, eat them sparingly. I'm a bellypetter like Sharkfan. When I feel my stoma painfully trying to push waste out, I know my output is getting super thick and I'll actually push the output away from my stoma from the outside of my clothing. That's not easy to do inconspicuously while in a group! Unfortunately, once I feel all of this happening, the waste is already under my barrier ring and I have to bide my time until I can change my bag.

I hope everyone's suggestions help!

Hi Jalrien, welcome to the site. If you have an ileostomy, your output should be more on the liquid side, so maybe more fluids are needed, like fruit juices. It's all trial and error.

Welcome Jalrien. I cover the filter on my pouch, put some air in it, and use lubricating deodorant! LOL. It also has to do with what I eat. I have found that if I eat certain foods, my output is more solid... For example, I had a big dish of poutine the other night followed by cheesecake and was pancaking the next day.

Sally K, poutine and cheesecake sound worth it though!

Thank you, Ron. I'm originally from Michigan. Graduated from high school there. I will try anything, so thank you for replying. I'm learning today with all these replies that everyone here has experienced the same as me at one time, and it's such a relief to know people who are supportive and encouraging.

Thank you Sally!!! I'm looking into lubricating deodorant now to see if that helps. Luckily, I haven't had any odor yet! So appreciate the help and reply!

OMG, thank you eefyjig! My wife gets so mad when I pet my thick output in the bag to move it down. She's constantly upset with fidgeting. This site and the people here are the greatest thing to ever happen to me. All the things I feel and do are done here too! Thank you for reading and replying to me....

Sharkfan, can't thank you enough for the help. Like you said, I'm not alone with what I'm dealing with and just you replying and making a suggestion is beyond what I ever expected when I came here. Thank you Sharkfan!!!!

Thank you, JTM. I'm gonna try everything people suggest here, so I thank you for replying and offering any help. It's unbelievable to know I'm not dealing with this alone and others have the same issues... Thanks again, JTM!

Thank you Justbreathe. I'm gonna try the coffee tonight, if it doesn't work. Then oh well, it's worth a try. Thanks for offering support. This site is new to me and I'm so overwhelmed knowing people have the same issues and are helping me. THANK YOU JUSTBREATHE!!!

LOL OMG it was!!!

Too much bread? Bungs me up!

It all depends on what I eat. Lately, I've been eating a lot of red meat, shrimp, and had my first batch of Northern-style chili. Needless to say, my output has been on the thicker side. And yes, I fiddle with my bag to make sure no pancaking happens. I had a blowout once while out to dinner because I had my shirt tucked in and no air in the bag. I got my ileostomy 3 months ago, have learned a lot since then, but still learning each day. I found this forum and am glad I did. There's a lot of good info, and none of us ask for this, but it saved my life. So I just have to learn how to live with my new situation. I don't sleep through the night because I'm checking my bag. I had one blow off after a few too many adult beverages. Needless to say, I learned a lesson. Plus, I think I need to drink more liquids when eating things that thicken up my.

Pancaking is a huge issue for many ostomates- not as much for ileostomies since they are usually more liquid output but it can happen to anyone- I have read many responses and I usually go thru the list of things to try with my patients-

Filtered bags- while they are great for air they almost "vacuum seal" the bag down and since no air is in the pouch the stool has more tendency to clump at opening. Can either try a bag without a filter or some say put a small piece of duct tape over the filter to allow a little air to stay in pouch.
If using a 2 piece you can roll a small piece of toilet paper into a cigar like shape and put at very tip inside of pouch to create a little room and it will be emptied in toilet with stool
Adding lubricant- so many options in this area- many opinions on which is the best one. Get samples and see which you like best
Watching what you eat- I tell them to keep the stool just a little bit more loose- and encourage a prune a day for some and active yogurt for some or a probiotic pill - whatever it takes to keep YOUR stool not so sticky/thick that it won't slide into the pouch.
Trying light convexity- not sure if you are wearing flat or convex right now but the curve of a soft/light convex can help with the angle in the pouch that helps the stool not clump as bad.
A belt can help keep wafer snug on belly and prevent the pressure from the stool from being able to clump under the wafer.

Best of luck and let us know what worked best for you- :)

I had an elective colostomy last November and am fortunate that I only have activity after coffee or yogurt in the morning. I have IBS and it can take anywhere from 60-90 minutes to completely empty my bag. Fortunately, once done, there isn't any more activity until the next morning.
Once I feel output beginning, I manipulate it because it's usually thick. Once I have forced it down and have emptied it, I take very warm water and slowly pour some into the bag which loosens what's in there. Depending on how thick and how much, I might do this 2-3 times.
I empty the contents into a plastic container in the bathroom sink from a standing position. I have never sat on the toilet because I find it very awkward. Of course, I empty the container into the toilet!
I use a Coloplast Sensura Mio one-piece. When ready, I dry the damp bag with a hairdryer.
Now I can eat breakfast. Because of the IBS, I may or may not feel more output but it will be loose or watery.
The record number of outputs is 11. Too many times I'll think I'm done and start putting everything away only to have more into the bag. After the initial thick beginning, the rest is much looser.
The warm water or hairdryer have never compromised the bag's durability.
I hope this provides another option.

I read that adding a little baby oil inside your bag keeps things moving down. Anyone tried this?

I've been using coconut oil (spray) as a lubricant. It's cheap and smells good.

Everything this group has told you works. They are wonderful. My husband had pancaking and their tips of mineral oil and air made a difference. Yesterday he ate more than normal. I didn't have the filter covered all the way because the day before he had a ton of gas in the bag (due to what he ate- onions cheese in a sandwich) and I didn't want the bag to balloon. We were on the 6th day of wear and it pancaked and leaked. My husband is only 6 months in with his ileostomy and we are constantly learning. The good news is we had a month of changing apparatus every 5-6 days and had no leaks. And the leak yesterday was really due to us not being more diligent. Hang in.

Sorry! Have had an ileostomy for 17 years. I have never heard of pancaking. What is it ??

Hi!! I'm only 4 weeks into colostomy due to diverticulitis so I'm literally still learning. Twice my bag popped loose and in a frantic panic I called home health. My nurse suggested a ring and we tried it. Honestly it helped somewhat, maybe it creates a little air pocket so output doesn't just stick to the stoma but who knows. I did notice that it helped, next time I'll try also adding a bit of olive oil to help things slide down... the ring helped with the skin irritation as well. I'll deff share if it works LOL Keep you posted!!

Hi, I'm just reading your question now, don't know why no one has answered you, and I don't know why I didn't see it when you posted. Anyway, pancaking is when your output accumulates around your stoma, and eventually starts to erode the seal and get under the flange. It forms a kind of 'pancake' around the stoma, instead of moving down to the bottom of the pouch. It's usually easy to solve with a little lubricant to move the output, putting a seal over the vent (if your pouch has one) as this will prevent the pouch from sucking in against your stoma, making it really hard for output to move. If your output is really thick, increasing your liquid intake can help loosen things up so it moves more easily. Some people need to adjust their diets to loosen their output, everyone is different. It's also helpful to have a pouch with a viewing window, so you can tell right away if things are starting to build up around your stoma.

Terry