Dealing with Pancaking Issues with My New Ileostomy

Ahoy, ostomateys! (Has anyone made that joke before?)

Oh boy, my first post! Hi all! My ileostomy, Charlie, was born on January 5 and is doing very well! He rapidly shrank once I got home but seems to be settling at 1 inch. He's very active and my output is very thick. I've been dealing with a lot of discomfort and paranoia about leaks due to constant pancaking. Currently, from the suggestion of the visiting nurse and confirmation from my doctor's NP, I'm wearing a convex Hollister. I tried the convex ConvaTec with the nifty built-in barrier ring but I leaked like crazy. I don't love barrier rings because my stoma likes to wiggle around, retract, and pop out a lot, and I feel like the barrier rings don't help him stay in place--I've found them to be absorbent of the leakage, which makes me feel they're less secure. Moreover, it's really bad at night because he's very active then, and so I wake up with a full bag and a heavy pile covering the skin barrier. I've kept my current appliance on since my last nurse visit on Monday and she's coming again tomorrow (though I can and have changed independently--I just feel more luck when she supervises me!), which has been a bit uncomfortable due to the sensation of leaking (though no sign under the skin barrier) and the skin barrier basically eroding around the stoma. I've tried wearing and not wearing my OstomySecrets support wrap, keeping air in the bag (which I don't like due to how visible it gets >.< still working on that), and it's pretty much the same result.

I'm sure a lot of the gathering around the skin barrier will be eased when I get my hands on lubricant, but I'm wondering if there's any wisdom, particularly amongst lady-folk or those whose stomas are rather close to the navel. I don't know why they put me in the convex, but I suppose the flesh is a bit uneven because there's kind of a dip below the stoma, whereas above there's more fullness--it's not flushed or retracted, but I guess it's uneven. Please feel free to ask follow-up questions if you need more details to help. TIA! <3

I do not have a flat stomach (but after being constipated for 3 years, decommissioning--not removing--my colon set me from ~145 lbs to 130!)

Ahoy Julie,

You are the first I know of to reference us as: Ostomateys. Very good wordplay.

Ya got questions? This is the place for answers... many answers and ideas. Lots of experienced "First mates" from around the world gather here to share their stories, provide guidance, and lend a sympathetic ear.

After my colostomy was installed... I was clueless. Bumbled around for months until I dropped anchor here. And now I DO have a clue!

All right, enough babbling from me. Let's dive in...

Ileostomies are prone to leakage. Output is more liquid than firm and acidic. I have a colostomy with firm output, so leaks are less of a problem.

"You have to kiss a lot of frogs to find a prince." To wit: All ostomy supply manufacturers offer free samples and have ostomy nurses on staff to answer questions. Order different flanges, bags, barrier rings, adhesive remover spray/wipes. There is a lot of variety. You're looking for the setup that works best for you. So experiment, analyze failures. Like leaks, uncomfortable fit, skin damage. If your stoma protrudes above your skin, you probably don't need a convex wafer. Convex is usually used to push skin down, so the stoma rises above skin level.

Pancaking happens. Just the way it goes sometimes. It will take several months for your system to adjust and heal. Then your output will become more predictable.

Pancaking. I use lubricating deodorizer. Helps a little. I usually just push pancaking down toward the bag bottom. Gross, I know. You'll get real familiar with poop and your stoma.

Don't lift anything even slightly heavy. Major complication of an ostomy: Parastomal hernia. I have one. Sucks. Makes for a large bump in my shirt. No hiding that puppy. Even if you're very careful, you might still develop a hernia. There are support belts you can wear to "maybe" prevent a hernia. No one knows for sure... but it doesn't hurt to try. Nu-Hope Corp makes a nice variety of belts. "Stealth Belts" are worn by many active Ostomateys. I use Nu-Hope belts. Coughing and sneezing also can cause hernia. Try holding a pillow firmly to the stomach while coughing/sneezing.

Only use barrier film if your skin is getting abused and damaged. The film can interfere with wafer sealing. Wash the area around your stoma with soap containing no dyes, fragrances, or lotions. These chemicals will interfere with wafer sealing/adhesion. I use Cetaphil soap.

I use a barrier ring. Mold it to fit around my stoma, leaving no gap between skin and stoma. Then cut my wafer hole allowing for plenty of clearance around my stoma. Barrier ring seals to skin and around stoma, wafer goes on top. If you use a 2-piece system, you can add another barrier ring that fits on top of the wafer and around your stoma. Then snap on the bag (pouch).

Again, welcome. Soon you'll have your sea legs and cast off upon the stoma seas.

You saying you don't want your stoma moving around is going to be impossible. They go out, go in, get bigger, get smaller all the time, so not using a barrier because of that isn't logical. You have some sort of lubricant at home, try a little. Drink way more fluids. It's better to keep a little air in the bag rather than worry about how it looks.

If you do get some pancaking, just add a little water through the end of the bag, close it, and swish it around to loosen it all up, then let it go. That's if you have a drainable bag, which I recommend. Also, pancaking can have a lot to do with what you're eating. If you eat lots of potatoes and rice as well as pasta, you will get pancaking. Also, drink a lot of water. I hope things get better for you. Regards, IGGIE

It's a crapshoot… literally… everyone has their own ways and means - this is just one giant community, a friendly and helpful community trying to figure out what works best for each of us. So many great responses - new and older ones in the archives as well. I have personally posted a bazillion over the last 3 years, and many good folks and good comments/fixes go way back. We need CliffsNotes as well as a stoma glossary of terms and buzzwords.
For example, and regarding your post - many think of pancaking as a bad thing - as an ileostomate, I look upon it with favor instead of a constant liquid puddle. A happy medium is what I sought - to achieve this for me was a fine balance of fiber through digestion and, are you ready for this… a dash of baby oil into the ole' bag… and it's a clean flush when I finally figured out the recipe - only took 3-1/2 years… yes, I am a slow learner. Stick with this site and you'll find the answers you need. Welcome and best wishes. jb

Words of Encouragement from Ostomy Advocates I Hollister

I just suggested this on another post today, so I will repeat it here as well. A stoma nurse may shake her head and pooh-pooh (pun intended) this idea, but it has worked for me for a long time with no issues—leaks or stoma-wise.

Walgreens sells a disposable bottle of enema saline solution. The lid on that is a 3-inch spout applicator, and it fits perfectly on a 4 oz. bottle of baby oil. This spout allows easy distribution inside the bag—aim and squeeze only a small amount in, then gently rub the oil around under the stoma… v-i-o-l-a… the pooh will slip-slide away. As a bonus, you can purchase a large bottle of baby oil (generic is cheap and works fine) and refill the 4 oz. size.

How about a book called... "Stomas for Dummies?" The ins and outs of poop and pouches.

Chapter one: How come my butt doesn't work anymore?

There are "dummy" books for most everything else.

Shitload of information for dummies.

Brilliant idea! 👏👏👏👏 Perhaps the lady that wrote “I'd like to buy a bowel” could assist you in publishing such a book. I will gladly purchase a copy! Keep me posted… JB

“No Bummies for Dummies”

My husband initially had plenty of leaks even with the barrier ring. He had a lot of uneven skin areas due to the weight loss, so we started using paste in those areas, which did help. Now that he's gained weight, we no longer need the paste.

Using an ostomy belt also really helped my husband with leaks. It just seems to hold everything close to the skin.

Good morning!
I am only 3 weeks post-surgery. I have a temporary ostomy bag. I'm getting all kinds of helpful tips. I ordered the Brava lubricant with deodorizer (not cheap). I actually have many oils arriving today from Amazon with lavender. My question is how much do you add? 1 to 2 tsp? I do have pancaking going on at times.
Thanks for any help

Donna

The lubricating packets I get are 8 ml, so you'll want to use 1-1 1/2 teaspoons. Using any extra is just a waste because it just sits at the bottom of your bag.

I have never measured - I use my homemade applicator and basically lightly dispense oil around the bag entryway (after the spout), then clamp off the spout and rub the oil around the interior of the bag - mostly just below the stoma. After rereading this post, I feel the more I read about “leaks,” the less I understand. Could we all be confused or ill-informed as to what a leak actually means? To me, it would mean anything breaking the bag adhesive barrier, thus leaving a discoloration on the white tape. The barrier does absorb liquid, and I am guessing this is why I apply a barrier wipe substance to the skin surrounding my stoma for protection from seepage. I do not consider seepage a leak. If there was no seepage, I am guessing I could wear my bag for endless days. Jb

If you contact the suppliers, I contacted Hollister since that's what I use, they will tell you that you only need to use the barrier wipe/spray if your skin is actually irritated. My ostomy nurse said that years ago when the adhesive was much harsher on your skin, they recommended using a barrier wipe/spray but not now because the adhesive is much more friendly to your skin, unless your skin is irritated. I haven't used a barrier wipe/spray for probably 2 years. Not saying using it is wrong, just repeating what I was told by the company that makes the stuff. 🤷‍♂️

In the early days of ostomy-intro, I had a nasty rash—not where the tape was, it was under the entire ring, which I refer to as “where the rubber meets the road.” The cure was stoma powder followed by a barrier wipe. Once healed, I continued to use the barrier wipe only (per ostomy nurse). This was 3-1/2 years ago. This wipe appears to leave a clear protective sheer layer between my skin and rubber/wax, and stickability is very near super-glued. I use adhesive remover (wipe or spray) on adhesive tape only. This allows the tape to release easily; the whole shebang then pulls away with no problem or skin issues. Maybe I am just lucky, or we all do have different skin types, and mine must be tough, or that barrier wipe is the bomb! Keep in mind my output never has a chance to go beyond the barrier ring (gasket) because I change this setup every other day and always shower naked on change day. jb

Ooh... love this idea! How exactly though do you do this? My bag is all sealed. Love when it is liquidy as it just spills out; the mushy stuff is harder to deal with.

Essential oils may contain chemicals that I would not put into my bag... I know the baby oil I use hasn't caused any issues - I think if they use it on babies it must be pretty safe... I don't know about other oils?  JB

Yes, baby oil [only a drop] is helpful and inexpensive - but like JB, I have an ileostomy - and you have retained your colon - so maybe for colostomates this may differ.

BW

Jayne

Julie,

I thought I would mention this - for what it may be worth - although my skin does not have folds and the abdominal skin of the abdomen [whilst having a hernia following traumatic removal of a novel implant and two years of extensive sinuses and stuff] - I have settled down and do not encounter your current problems... HOWEVER:

The observation I would like to make on here is this...

IMHO and experience over 46 years and counting, I find that a single drainable appliance is best - because it is the lightest possible 'drag' against both the stoma and the abdominal skin overall.

Upon occasions where I have needed to manage uneven skin - or when there were complications, historically, with retraction and stuff, I have found a specific application of 'stoma paste' - used as a filler in the specific 'dimple' or crevice area in question has proved efficacious [and very very practical and bespoke to the problem].

The limitations with barrier rings - whilst they may be cut to a specific shape - they are ALL of an overall regular thickness over their entire circumference - irrespective of whether concave or convex or flat - and irrespective of the brand that may suit a patient's allergies [or not] skin-wise. 

The point I am sharing is the fact that one can be VERY SPECIFIC as to how much and where one applies a little paste as the 'filler'... and I iterate - from my own perspective over time - [the two-part system may be fine for immediate post-surgery] I have found the minimal drag of the lightest possible weight of wafer/bag has been my own saving grace.

I do not wish to promote any brand specifics here - as there are sponsorships and also personal preferences which I respect... However, over time I have come to find Salts Comfort B bags not only aesthetically pleasing - and great for one's 'body image - matching underwear etc - but ARE extremely lightweight and a good FEEL [both in heat and cold].

For those with very sensitive skin issues... a wafer [either independent of / or attached to the collecting pouch - having zinc contained within its colloid manufacture WILL speed healing of any broken down or very sensitive tissue. [Thinking of dimples in skin where effluent may collect for example as I read your own case?]

Again there is only one manufacturer on the market that includes zinc within its colloid manufacture... Hope this observation may help...

PANCAKING is a relatively simple 'nuisance' to overcome in my experience and what has been said by others here I iterate... DIET MANAGEMENT PLAYING AN IMPORTANT PART IN MANAGING THE CONSISTENCY OF OUTPUT... but I DO KNOW that when the surface upon which one is trying to adhere any collecting pouch has a non-smooth surface - particularly abutting the stoma, then this in itself is a cause for challenge - both for the wafer AND of course the bag too - particularly if the body weight is high for the patient in question.

I know your post was about pancaking - but thought the unevenness of skin mention was relevant to the post?

Good Luck - THERE IS SO MUCH EXCELLENT SUPPORT HERE ON MAO from so many varied experiences and different perspectives - one just has to figure what's right for you.

BW

~ ~ ~ ~ ~ waves ~ ~ ~ ~ ~

from the Hills of UK

PS

I believe that both Salts and Coloplast are able to supply samples to the US - and most manufacturers have their own brand of stoma paste - but you may need to ask specifically for this - because clearly there is more of a profit margin on complete appliance sales [rings wafers back plates etc.] than in selling one tube of paste which a patient can custom use and which lasts a long time!

J.