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Pancaking: A Headache for Ostomates since the 1800's (w/ video)  

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VeganOstomy
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July 12, 2018 10:34 am  

Hi Esther, 

Rinsing your pouch with water probably isn't helping the situation, so I would stop doing that for now and resume once things are back to normal. 

It sounds like the primary issue is the leaking and the pancaking may be a secondary problem that's compounding the issue. I would still recommend speaking with a nurse to address the leaks/skin issues first, and while you're doing that, see what you can do to reduce the pancaking.

Since you're also a colostomate, have you discussed the possibility of irrigating your stoma? This would basically flush out any stool in your bowels at a scheduled time and would reduce the likelihood of pancaking. 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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Onalee Ginardi
 Onalee Ginardi
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July 12, 2018 4:00 pm  

Hi Eric,I just found your website and I am in tears to FINALLY found the answers to my problems. Two years ago,I was diagnosed with Rectal Cancer. I had the whole nine yards,Radiation,Chemotherapy,Surgery then more Chemotherapy. I ended up with a permanent Colostomy Bag. For two years I have been dealing with the same as others I have seen on here. I finally have a name for the stool not coming down in my bag,collecting around my stoma causing the wafer to come loose and leak. I have tried explaining it to the Doctor and he did say eat more fiber and drink more fluids. Trust me I drink enough fluid,I have a 100 oz mug I use.I think my problem is I am flattening my bag to my body therefore causing a vacuum. I am SO self conscious of my bag. I pull my underwear over my bag just so it doesn’t show over the top of my pants. The thing that is hard to deal with is being in public and having it leak MAJORLY. Nothing like being in a stall of a restroom trying to change not only your bag but yourself.Hoping that stool won’t land on the floor. You lose your dignity . I carry a backpack with me everywhere I go,with my supplies and change of clothes.I am so glad that I found your website to answer my problems that I might come across. By the way don’t you wish it was easier to change yourself in public? Rest Rooms just are not equipped for people in our boat.I try to go to places that has the diaper changing table in their stalls. Or a lone bathroom. Not that putting my supplies on the sink is any easier.I just take one day at a time,and hope that this day will be a good day.


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VeganOstomy
(@veganostomy)
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July 12, 2018 4:42 pm  

Glad you found me, Onalee! 

If you can find a "family bathroom" they tend to be better suited for an appliance change. However, I would recommend either carrying a change it that can hang in a bathroom stall or get a small hook to hang whatever purse or bag you normally keep your supplies in. 

I try not to assume that I'll have access to a sink, counter, garbage bin, etc. Always be prepared. 

Take care! 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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Tom DUERR
 Tom DUERR
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July 12, 2018 5:30 pm  

Onalee

I had problems with pancaking initially 10 years ago and found a Cymed product that I could wear consistently for 3 days. Every other manufacture's product would pancake in less than 24 hours....some in less than 8 hours. Cymed changed their wafer and adhesive in July of 2016 and the new one would not last more than 10-12 hours(pancaking). I started my search for a replacement and tried all the major manufactures again. I found success with Salts out of the UK. They are super helpful and nice. Get a sample of their convex CDSS1325. It works for me...I can wear it 3 to 4 days.


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Dona
 Dona
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July 12, 2018 5:37 pm  

Welcome Onalee,

Happy you found this place. Be sure to watch Eric's video 'untimely Leaks' under 'tips' in the video section.Very reassuring .. not a total blow out but in a car park:

https://www.veganostomy.ca/videos/

One of my favs!

Onset of severe Ulcerative Colitus Oct.2012. Subtotal colectomy with illiostomy July 2015; Peristomal hernia repair ( Sugarbaker, mesh, laparoscopic) May 2017.


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LK
 LK
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July 12, 2018 6:44 pm  

Hey there homesheba and...I have not met you yet...but am glad you are here.  I too am just 60 and had a great hubby who unfortunately died of pancreatic cancer just before our thirtieth anniversary.  I offered him the road away from me many times because of my health, he always looked at me and said No...that is not the way  do things and you know better!  We loved each other dearly and I miss him horribly.  When I think of the amount of appointment's and hospitals and surgery and bills I have had, it is crazy. Living in B.C. we have a good medical plan, but I have discovered there are meds and things just not covered. I have not one right to complain. My doctor fights for me when I need special authorizations and I love him for that. My man died just shortly after I had my ostomy surgery.  For a while I truly thought that the stress of me had killed him. But knowing cancer is high in his family, I knew better once I had thought it over.. I live in a small town away from my family, my two kids and grands are here, but I had no one to talk to about these issues, if had I know they would not have understood, I decided to see what was out there, if there was support anywhere. I am still learning about computers and just figured out spell check! so it has been an interesting journey for sure. It has been a hard life as I have several other health issues. My man was every bit of support I ever had. I do believe it is by the grace of God that I am even alive today. Especially after the year I was in hospital before the ileostomy. It was exhausting to no end, and took a long time to recover from. The lights always on, noise, someone always touching you clinically for one thing or another. Not enough fat on my eye lids to make a dark room when I closed them. No one really understood, no one to really talk to when he, had to go home to work after his weekly four hour visit. Praying he would get home okay. Thank heaven for telephones! Five hours away from family. It was hard. But I was determined to not let it get the best of me in any way shape or form. I was going to move on come hell or high water. I was going to survive. What shocked me was that I did! With the issues of further gut pain and being told another weird diagnoses of "pseudo blockages" I felt desperate. I had had such gut wrenching pain that ...well, you likely know  if you have had blockages or  worse. But something like pseudo blockages and having to sort out what it could be called as not one doctor wanted to name it. Then I found rare bowel diseases. I brought this up with my doctors about something called Ogilvies Syndrome, I thought I had written the page. My GP said yes, that sure sounds like it. I can not say that is what I have as I do not self diagnose, but I am aware of what is an emergency enough to know when to go to the hospital, so I try to get thru what I can at home. Narcotics are a part of my life right down to Fentanyl, just do not give me a shot of the stuff, it does nothing for me, good old morphine is what works for me. I do not have an addictive personality, and my doctors are aware I have great respect for medications.  I never abuse there orders either.  

Anyways, in a way we are all our own advocate, but having this sight has had me talking for probably the first time in my life about issues that were never talked about in my parents home. Jennifer, your a tough gal. Hang in there and I would say to any newbie, read what ever you can set your eyes on. Watch every single video Eric has. Take one day at a time. Things do get better. Just hang in there all the time. Look after yourself well and if you need to talk about anything or get ideas, this is a great place to be and then some.

Linda

Linda


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Esther
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September 2, 2018 11:50 am  

I have the same problem as you and am at my wits end, I just don't know what to do. Have tried different pouches but still get the pancaking. Have tried the pushing it down to the bottom of the pouch but usually I end up with a leak. Have had since Sept 2015 and still frustrated


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Esther
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September 2, 2018 11:59 am  

How would I go about flushing my stoma or does it have to be done by a medical person, nurse or Dr


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VeganOstomy
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September 2, 2018 11:50 pm  

Hi Esther, 

If you're talking about colonic irrigation, then you'd be able to do it yourself once you've been shown how :) If you have a colostomy, it's worth looking into (ask your stoma nurse for guidance). 

Pancaking is quite frustrating, and if dietary changes don't help and other techniques aren't working, you won't be left with many other options. 

Best of luck!

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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Derek
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September 3, 2018 9:43 am  

Hi.

Im quite new at all this,3 months more or less and have had all the normal problems.

Pancaking was one, i wear hollister products and as my stoma isnt long was finding that output wasnt going into the bag.

I then bought the hollister belt and started using the plastic type rings to seal around stoma.

This has worked great and no pancacking and am getting a good 6 days of wear from my wafer.

I was looking into buying from china to save money, but since i discovered this method,if i can regularly can get 6 or 7 days wear im happy to pay the extra for reliabilty, and quality.

I now buy from a hollister wholesaler who gives me a discount, so am saving money that way.


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VeganOstomy
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September 4, 2018 10:10 am  

Hey Derek, glad you found something that works for you!

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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Susan North
 Susan North
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October 11, 2018 12:18 pm  

What are the plastic rings you use around your Stoma? I add a wax ring to my barrier but would purchase the plastic ring or call the company. Could you email me the info? (My surgery was last February abd I am still having issues. I am short waisted and gained a lot of weight abd I am short.)
I was told by Hollister and my Stoma Nurse never to put water in the pouch. The few times I did it was zero water or distilled water so that there was not micrbribes like you get from tap water.


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Bill Gracey
 Bill Gracey
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October 12, 2018 2:51 pm  

I had my ileostomy in June, and I'm so grateful for your site. Thank you very much. My problem has been with thick stool at night that causes bag overflows, and this gives me some things to try and reduce the viscosity.


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Lynne
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October 15, 2018 1:58 pm  

Great idea about the hook - I'm gna include a suction hook in my bag of tricks now! I have an illeostomy and always have a plastic grocery bag in all of my vehicles with a cleanup kit - ie: a couple of spare appliances, a small pack of baby wipes, a couple of sheets of paper towels, clean pair of knickers and a singlet, ANOTHER grocery bag to wrap the final wee pile of rubbish up in (so it can be neatly disposed of in the sanitary napkin disposal bin - usually found in the ladies restroom). I put the 2nd grocery bag on top of the closed toilet lid (or handbasin if there's one in the cubicle, the baby wipes pack and strips of ripped paper towel on the cistern, then work from there. You don't need water if you have baby wipes with you, they're excellent for cleaning up baggy blowouts. I find that sections of paper towels torn into long strips are awesome for the final mop up of any moisture around the stoma just prior to slapping on that new bag - helps with the stickability.
The size of this spill kit is minimal, it will fit in a handbag, deep coat pocket or backpack etc.
To be honest, once you've had a stoma for a lot of years you stop being so upset when accidents occur. I've been caught short at times without my spill kit, have found a loo and just used loo paper to jam up around where the leak is until I can get home. Usually when out riding my Harley! 😅 Cripes, I even cart around little dog pooh pick up bags for emptying my appliance contents into if I'm in desperate need of getting rid of my bag contents while out in the wopwops somewhere - baby wipes are great for this too, just empty your bag into the doggy doo bag, do a quick wipe off of the bag closure with the baby wipes and you're good to go. You can pop the doggy doo bag in the boot of your car or into another plastic bag in your backpack etc. until you can dispose of it properly.
As for pancaking - I'm always dealing with that due to a thicker stool output...have discovered that wearing larger capacity bags has helped manage it way better. I eat a whole food plant based diet, so tons of fibre, my smaller capacity bags just weren't coping. Also, using the Salts Mouldable Seals in conjunction with my illeostomy bags has stopped alot of leakage problems.


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Lynne
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October 15, 2018 2:05 pm  

Hi 😊 Have you tried the Salts Mouldable Seals? They're VERY sticky and nice on the skin. I really rate them. I fit them to my bags as opposed to applying to the skin around my stoma. Has worked well for leakage issues 😊


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Debbie l
 Debbie l
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October 16, 2018 9:40 pm  

I use tap water all the time while wearing the pouch and have never had problems.


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Sandy Brooks
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October 22, 2018 12:18 am  

Hey Eric!! I hope ur feeling better!! It’s nice to see u back in the fray again!!!

I’m two yrs w my ileostomy so Im not a newbie but I seem to have a serious problem w pancaking at night when hopefully I’m asleep and not able to remedy the situation before a major leak. As such I tend to leak most every night even if I have a new pouching system on!!

I just changed companies and therefore products so it’s a little better but still an issue! Much to my hubby’s and my dismay!!

But I have pretty much eliminated leaks during the day. I discovered that I must wear my bag vertically so it doesn’t pancaked & I have to leave it not compressed inside my clothing so I have purchased and made a few pouch covers so the pouch can hang independently so w my lubricant/deodorant the output will fall to the bottom but w my pouch cover it’s not very noticeable. On days where I’m feeling more confident, i wear a cover that has a design and is totally noticeable! So that depends on my mood!!

As u can imagine, I’m from Boston & w the Red Sox in the World Series, there will be MANY days I’m wearing a Red Sox themed cover!!

Again I’m so glad ur back at work!! Enjoy ur upcoming conference!! Can’t wait to see ur video from that!! HUGS!!!


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VeganOstomy
(@veganostomy)
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October 22, 2018 1:38 pm  

Hi Sandy,

Nighttime pancaking and leaks are terrible. I use to have them all the time, but almost never have them anymore. The only I changed was that I don't have very large meals at night (although, I still eat several times between 6pm and when I go to bed). I think the volume has a lot to do with my issues, although I can't it will help with yours. 

Have you been doing anything to loosen the output at night? Maybe drinking prune juice or more liquids when you eat supper?

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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danbh
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December 12, 2018 11:12 pm  

Help me get rid of pancaking please !!! I have my colostomy now for about a year and a half, and never had so much trouble with pancaking.

First - I had a parastomal surgery a week ago, and still have sutures, pain, and the site is swollen. This may be a reason for my trouble, but I don't see how.

Second - I use the Adapt lubricating deodorant, and spread it inside the bag before the bag goes on.

Third - before asking for help I watched all the videos Eric have regarding this, and tried all the great tricks Eric talks about, with no result.

Forth - I eat the same things I was eating before this surgery, and used to have small hard marbles that would fall to the bottom of the bag right away. I could even feel them passing before they came out, and it was just shooting them down the bag.

Fifth - My wafer is doing well because I clean it after emptying the bag (what a mess) so that lasts me for about 5 days, but some bags have to be thrown out, even water does not get the stuff out. Is there anything I am missing? I am using a 2-3/4" bags and wafers, even the 2-1/4 bags do fit nicely, but both sizes give me the same - Pancakes.

Please HELP, I thought after a year and a half I knew everything, guess I do not. Have an appointment with the stoma nurse, the fastest I could get to see her is in two weeks. Doctors and hospital nurses know nothing about it, and want nothing to do with it. (wonder why).

I have no leaks - lucky me.

Thank you for any suggestions

Dan

 


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LK
 LK
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December 13, 2018 12:51 am  

Hey Dan...I can think of a thing or two here.  Are you on a medication that may be causing your stool to be tight? Our bodies can sometimes react differently  to things we are familiar with and change it up on us just for the heck of it.  Also are you drinking enough or maybe less fluids then normal? I have failed to continue my usual amount of fluids after the summer heat is gone.  Not hot and dry, less fluids...can be the culprit, even two glasses of water less can cause this issue for me. You apply the lubricating deodorant every time you rinse the bag right?  If it is covered, because I find it expensive, have you tried two tubes of the stuff? So the next thing I would ask is are you  pushing out all the air in the bag? It could be that you need to leave some in to give the bag room to expand and the output room to fall down the bag. I tend to put about 2 tablespoons of water in the bottom of the bag when I have days that mine is thick. This allows me to help thin the output by gently pressing the fluid up the bag to thin it there then again once in the bottom of the bag. I discovered this was  one of my issues when my leaks were happening at night. It helped to have the fluid in the bag so I could move it around without getting up at night. One more thing, ask your doctor if it would be okay to take some magnesium with a meal to thin the putput where it starts. Only do this if your doctor is aware of it as a drug that builds up in the system can be dangerous, this something he should be in on from the start. You would not want to be harming yourself or an organ  by not keeping him in the loop. Another thing I tried was taking Metamucil with a meal,  that may cause constipation like affects, of worked like jello might, it made the product more slippery then usual. Check with your doctor first in case you have weight issues or to avoid a dangerous situation.  That' s  all I have for you.  For me, in the end, it was mostly the air in the bag thing and not wearing tight pants. Good luck with this issue, I know full well how frustrating this can be. 

Linda


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