I love pancakes, but I don’t like pancaking! In the world of ostomies, pancaking can be a frustrating, challenging and sometimes a messy ordeal. Pancaking applies mostly to colostomates, although some ileostomates with thick stool might experience this too.
Video
First, a quick definition:
“Pancaking” is a word that an ostomate might use to describe when their stoma output stays on the top part of the pouch and/or collects around the stoma.
Without anyplace for the stool to go (stubborn stool!), it often forces its way under the wafer or muscles through to push the pouch off. Obviously, nobody wants to deal with leaks in this way, so it’s important to identify the cause and correct the problem.
I’m my experience with thick ileostomy output, pancaking has only caused leaks when it happens overnight; when it happens during the day, I can usually intervene before things go south.
Here are a few possible causes and some things to try:
Thick Stool
There are a few ways of dealing with thick stool; I wrote an entire article about it HERE, but these tips are specific to help prevent pancaking.
Lubricate the inside of your pouch. This can be done using a lubricating gel or liquid designed specifically for ostomy pouches, or using DIY methods like olive oil or cooking spray. The idea is to coat the inside of your pouch so that stool can slide down to a happy place at the bottom of your pouch. Lubricants need to be reapplied whenever the pouch is emptied, but it’s important that you Lubricate up to the top of the pouch (if possible).
Drink more liquids. Adding more water or other fluids to your diet will help to soften stool. Some people might try beverages known to loosen output like prune, apple or grape juice; other options like coffee or even soda could create the same effect too.
Increase fiber intake, but focus on insoluble fiber. This shouldn’t be a problem if you’re eating a lot of plant foods, but increasing insoluble fiber will move things along and can prevent stool from becoming dry, hard and difficult to pass. You’d typically want to focus on whole grains, vegetables and produce with skins. Use caution with high-fiber intake if you’re fresh out of surgery.
Some ostomates are told to take laxatives by their doctor. I would personally avoid this option as laxatives can create other problems down the road. Check with your stoma nurse or doctor if you feel that laxatives are needed.
Check Your Filter
Believe it or not, some pouch filers work too well, and they remove air from the bag while creating a vacuum at the same time. If this is the case for you, cover the outer filter on your pouch using a sticker (they often come included with your pouches). Some brands, like Hollister, don’t include these stickers, so you’ll have to improvise and use tape or something similar.
If it turns out that your filter is being too aggressive, keep using the sticker, and periodically remove it when your pouch begins to fill with gas. If this is too much trouble, you might want to try other pouch systems to see if another style of filter weekends l works better.
You can also try blowing a bit of air into the pouch when you empty or change it; this bit of air will counter the vacuum effect and will help regardless if your pouch has a filter on it or not.
Stuff It!
I’ve heard of some ostomates putting a bit of wet tissue/toilet paper inside their pouch to prevent the pouch from being too flat. This method is similar to blowing air in your pouch, although it may not prevent the vacuum effect caused by a filter. The downside is that it’s more inconvenient to use this method.
Let’s Get Physical!
Sometimes you have to manually move pancaked stool down in order to avoid problems from developing. Don’t be afraid to push, shove and squeeze that stool down to the bottom of your pouch. This may be necessary if you’re wearing an ostomy wrap or tight-fitting clothes.
Additional Tips
- If you’re covering your filter, uncover it at night so you don’t have problems with ballooning (when your pouch is too full of gas).
- Rinse the inside of your pouch before changing it, as it’ll help remove any stool that might be stuck around your stoma.
- Rinsing can also help to empty your pouch during regular toilet visits.
- Some oil lubricants may reduce your wear time, so use a commercial ostomy lubricant to minimize that risk.
- Experiment with different ostomy systems to see if another brand or style reduces pancaking for you. This may be necessary if the filter on your current pouch is too troublesome.
QUESTION: What do you do to prevent or deal with pancaking?
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!!!
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?
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.
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.
Hey Derek, glad you found something that works for you!
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.
I use tap water all the time while wearing the pouch and have never had problems.
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!
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.
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!
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.
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.
I’m fairly new (9 mo) but I have found Gatorade and Powerade hep to loosen my stool. If that’s any help
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
I have had my colostomy for 2 1/2 yrs and just lately I am having difficulty with the pancaking and it leaks out. It is very embarrassing and I am paranoid. I have had to change the pouch three times in the last three days and my skin is getting very raw and sore. I also have a permanent colostomy cant be reversed so I need to figure out how to solve this problem. It is getting quite expensive besides being painful. Any suggestions
Hi Esther. Have any of the suggestions in this article helped?
It sounds like you may have multiple issues going on – the raw skin won’t help, so that should be addressed.
Have you been able to speak with a nurse about these leaks? If it’s not related to the pancaking, they should be able to offer a few suggestions on what to try next.
Best of luck to you!
Thank you, I have read the articles here but none have worked in the past. One nurse told me to pour water in the pouch to clean but think maybe that’s why the pouch leaked the water broke the seal. I dunno just grasping now
Ester –
Everyone is different so not sure if this will help. I have had the bag for 10 years. It took me a couple years to find the right appliance. I used Cymed and it worked great for 7 years. Had to change it every 3 days and rarely had any issues, and had no worries. They changed their wafer and adhesive and they would pancake frequently..I sometimes had to change them 3 times per day. Cymed no longer makes an appliance that works for me.
I tried samples from all major manufacturerers. They only one that works for me is from Salts out of the UK. Come to find out they manufactured the wafer/adhesive for Cymed until they changed their supplier. Not sure if it will work for you but contact Salts (they are great to work with) and try a sample of their convex CDSS1325. I do not like the convexity and I sometimes have an issue with the edges curling, but they last 3 days and my skin is healthy.
Good luck,
Tom
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.
How would I go about flushing my stoma or does it have to be done by a medical person, nurse or Dr
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!
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 😊
Hello friend,
No matter how new or how old the videos are..or better yet, “the message’s” I find the help I need with what you have to teach us. I myself am dealing with very watery or very thick stool’s. For my more thick stool’s, drinking a coffee cup full of very warm water solves the problem almost right away. (I found the answer in your vlog) I’m sure the reason my stool’s are thick is due to my diet..also, I take a narcotic type medication, and depending on how often I take it, it I think will thicken it more so then if I’m not taking much. Also, I know I need to drink more healthy fluid’s, such as water, healthy juice’s from time to time would be beneficial. My bad..I need to drink more period! It’s I’m sure a good way to keep your insides healthier too.
Eric, you told me once to try and eat smaller meals through out the day because I was having trouble being up all night dumping my bag, and same during the day. I have found that by sticking to a more regulated diet, a structured diet has made my life alot less stressful. I’m not perfect, I do mess up from time to time and have struggles, but usually find the answers right here on your channel. You have been a blessing for sure!
Ok, the other reason I wanted to leave a comment was I was reading where a lady had trouble, small blockages, and not much output during the day but at night. She also said the opening to her stoma due to a surgical error was partially under her skin as well a bit above. I have this issue as well.. I had my second stoma revision a few weeks ago, still just a bit below but oh how it has made a huge difference. Now the trouble I still deal with is leaking on the skin just under my stoma. I love how the cohesive rings help, though I think my next bag change I’m going to give the past a try. My only concern had been, will it come off my skin like the ring?? We will see! Anyway, just to let the lady with that concern, yes…a revised stoma helps. Also, its Important that the Dr make sure no kinks. From her troubles, sounded like a possibility. I think Eric, you were concerned about that too.
Anyway, l feel like such a comment hog when it comes to your posts, and vids’..but I can’t help it, you have totally changed my day to day life! I truly owe it all to you Eric! I could not have gotten through these past several months without your help! I still struggle with issues not related to my stoma and diet per-say, more wound issues. I’ve had 5 surgeries since this past Oct..don’t want anymore! I have to say though.. because I’ve been trying to eat healthier, get more rest and drink plenty of water, my wounds are healing better. So again, thank you! Still, when it comes to concern’s I have about my iliostomy, I know where to go to see if the answer is in something you have written or talked about. For example, I’ve been having alot of belly sounds, gergling, air sounds etc. I was wondering if I could still have a partial blockage maybe without knowing. I don’t have pain, but at times pressure below stoma area. Or in my case..I have a huge hurnia that after I’m all healed, I WILL deal with! Curious though..is this common in Ostomy paitents?
Ok, so…
I still am coming to terms with the fact I have an iliostomy, not happy about it, and hope to one day except it. Having you on my side does help 100%. I have a hill to climb here, alot to take in even still. I’m sure many of you out there in my same shoe’s. One of my biggest concerns is..will I be able to care for this when I’m older??! Or, if I have it reversed, will I have bowel obstructions after. Insurance issues etc. I need though to focus on my day to day, not worry about tomorrow. I know this, yes. Just hard sometimes. Eric, time to get your therapist license..lol You could be an all in one for us Ostimates! Lol
Thanks again, and have a wonderful week ahead!
Mary
Colostomy on August 21, 2017. I use a small rubber syringe to wash my pouch when I empty it. I had the idea to use that syringe to add a little water to my pouch when I discover pancaking. About a teaspoon of water seems sufficient. It seems to work well. I’m up at 3 AM reading this site to validate my idea. I add the water at the ring as if “burping” the pouch. Thank you for a place to go.
I’m glad you found a method that works for you! Thanks for reading 😀
This post is for Robin who has the odor problem. I tried everything. Then I discovered chlorophyll. I take 2 tablets per day and it reduces the odor to almost nothing. And chlorophyll is an excellent antioxidant so it’s really good for you. The principle here is to help solve the problem internally. Bag deodorants help but they only attempt to mask odor. Other pluses to chlorophyll is that it helps freshen your breath and it will actually reduce armpit odor. It’s very inexpensive. About $8 per 100 tabs on Amazon.
Good luck and let us know if it works for you.
I have had an iliostomy for 8 years. It took many months to find an appliance that would last for more than 12 hours(I tried every major brand). It was a Cy-Med 1 piece. I wore this for about 5 years and consistently got 3 days out of them. All of a sudden they started pancaking and leaking after only a few hours. After investigating, I found out that they changed their formula of their wafer. They started using a more advanced extended wear hydocolloid. I called every warehouse in the USA to get all Cy-Med’s product manufactured before they started using their new wafer. This supply lasted me another year while I started to find a replacement. Salts from the UK has a product that works but it is convex and creates other issues(edges curl). Long story short, I know how to put on an appliance but something in my skin just does not do well with these new hydocolloids. I have talked with multiple ostomy nurses from hospitals and appliance manufacturers. Has anyone had a similar problem and found a workable solution?
Hey Tom,
That would be a great question to ask on the Community Forums : https://www.veganostomy.ca/community/
I’d be happy to discuss this there!
My Mom is 91 years old and had to have a colostomy is May, ever since then ,her appliance has not stayed on for more than 2 days. She has pancaking all the time,her wafer comes off sometimes 4 times a day, her output gets all over her clothes and her. Very expensive and frustrating, any suggestions to help us out?
ER
Hi Debra,
I’m sorry to hear about your mom’s trouble.
I have an entire article that goes through possible reasons why a bag may not stick:
https://www.veganostomy.ca/ostomy-appliance-wont-stick/
It will likely take some investigative work to find the true reason, but I hope that the article gives you some direction in where to look.
I’m 4 weeks out of surgery. My dr prescribed iron pills. These make my output smell sooo bad and dark and pasty the smell is what I hate the most. I get paranoid around ppl and I know ppl can smell it. I’ve tried the mouthwash and baking soda and the iron seems to make the bag weaker. I’ve cut back to 1 pill every couple days so that it is close to changing day.
I also want to say thank you! When I was released from hospital they gave me NO directions at all and I have had to rely on internet for answers to everything. It took me 3 weeks to get supplies. (I had to make bags last 7 days) so for us frustrated newbies ur website is so relieving and helpful. Please keep it up.
Hey, Robin.
Yeah, iron pills do crazy things to our output! Are you taking it with food? That may help a little, but consider getting an ostomy pouch deodorant to see if it also helps.
Wishing you all the best!
Eric
I have had my colonoscopy for 6 months and have always had a problem with pancaking, thick stools around the stoma and leaking. Last night I read some of your articles, changed my pouch, and put some oil inside the pouch. Today I had an almost full pouch with no pancaking and no leakage! I know it may be too early to know if this is permanent, but I am so encouraged and excited!!!! Thank you so very, very much.
Good luck, Gail!!! That sounds promising!
Eric, would you talk a little about clingy sticky iliestomy output. Still dealing with it. You said you had it before. How you manage it. Wits end here. An still waiting for ostomy Nurse to call me. You think grape juice would help? Thanks. lia
That type of output is definitely the most frustrating. I address a few strategies on managing thick output in this article : https://www.veganostomy.ca/dealing-thick-ostomy-output/
Which bag is more recommended for high loose output? My stoma is flat and new. I was the queen of blow outs in my month long hospital and rehab stay. Nothing new to me for 3-5 blow outs in one day until one sticks. Using wafers with eakin rings along with paste. One and two piece bags I’ve tried. Can’t figure out the difference. I do like the filter bags for sure. My skin is very sensitive and I’ve dealt with erosion already. That was awful.
One company sent me a huge supply of the MIO bags and they just look small compared to the other bags I’ve been using. I had called for samples only and they sent me a huge supply to charge my insurance with approx 60 of these bags that I’ve never tried. Should I send the smaller bags back and ask for samples like the original conversation? They included plenty of each product to be used in the monstrous box. Not the little trial is asked for.
I’m just lost. I’ve been told I need a convex for leaks due to my ileostomy and liquid output.
What seems to work for others here. I’m so confused and lost. …
Thank you in advance, Jennifer
Hi @jenniferfussell:disqus .
I’d recomment taking a look at this article to help you better manage your loose output: https://www.veganostomy.ca/dealing-liquid-ostomy-output/
When it comes to appliances, generally speaking it won’t matter if it’s a one or two piece, but you might do better with “extended wear” wafers. The barrier rings can help, but I’d try just the wafer on its own and move from there if you need to (sometimes the rings erode quickly, as you’ve experienced…. try different brands).
Good luck!
My theory is that pancaking is caused by a design flaw in all bags and I have a couple of ideas of how to rectify it but don’t know who in the companies to reach out to with them.
I’d suggest you develop a working prototype, get a patent on it, and then start showcasing it :)
Sounds exciting!
Thanks. I’m going to give Coloplast, which has been the worst for me as far as pc goes, a call on Monday and see if they bite. I’m friendly with a rep over there.
Good luck! I would still suggest getting a patent so the idea doesn’t get stolen.
I am a relatively new ostomate having had my surgery 6 weeks ago. I am using the Sensura Mio 2 piece bag with a convex wafer. I use the sticker and the deodorant gel and I still experience pancaking. I have used other brands (Hollister, Convatec), flat, convex. Changed my diet as much as I can at this point. Not sure what else to do. Any suggestions from experienced ostomates are welcome!
Hi Wendy,
I would imagine that’s pretty frustrating! When you put the sticker on the filter, do you blow a bit of air into the bag, or do you put some wet toilet paper into the bag? You need to make sure that there’s some air in there to separate the walls of the pouch, or else it’ll create a vacuum.
Also, do you have an ileostomy or colostomy? How thick is your output and is it like that all the time? Do you ever experience less pancaking or is it all the time?
Regards, Eric
Eric,
Thanks for your quick reply! I have a colostomy. I had my sigmoid colon removed and understand that my output should be fairly “solid”…but it isn’t. It is the consistency of whipped potato all the time. I have had the pancaking problem since day one. It has caused skin irritation and leaks. I don’t think I have worn a bag for more than 2 days, if I’m lucky. The output pancakes and pushes under the wafer even with an Eakin ring. The Mio 2 piece has been the best and longest lasting so far.
I have tried blowing air into the bag but never tried the wet TP. I will give that a shot.
Thanks,
Wendy
I’m surprised that you find the Mio works best for you; I experienced more pancaking with the Mio because of the large filter.
But it often takes some experimentation to find a combination or technique that works for you.
Wishing you all the best!
Try CDSS1325 from Salts. They will send you a free sample to try.
Tom
Thanks for answering several questions I had about baby oil use, stuffing in some TP and using stool deodorant drops. You are a great help!
I’m 61 years old and have had an ileostomy since I was 27 due to crohns. I Have gone through several major surgeries as basically i believe I was a test case for some doctors. Many times there just wasn’t the knowledge or medications that could have been utilized. but the Lord kept me alive and now my major problem is scar tissue adhesions and blockages. I am so thankful that you have this site to help so many people! Much of what you discuss I have learned thru trial and error throughout the years, truly what you do is so important for many and I just wanted to thank you so much because I know how terrible it was for me to basically have no one to talk to about the scary things that happened while trying to learn to live with the ostomy. I have been married 43 years now to a man who meant the vows he took with me for “sickness and Heath, better or worst’, and even tho there were many many trying times and loads of doctor , hospital , etc. bills, life has given me much joy and perhaps without what I have gone through I would not have appreciated things as much as I do. .. Just a thought?
Thank you so much for your message – it means a lot to me.
I’m so glad that you have a loving partner who has seen you through all this! Best of luck to you!
Eric
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
I have just found this website and I am wrapped. I am a newbie as I had my surgery in June. This site is going to be so helpful, thankyou!
:) I hope your surgery went well! Enjoy!
This is a great article. My son has an illiostomy “Crohn’s” and only has problems with french fries and tater tots since they don’t break down very well ( come out like they go in). He has to “chew chew chew swallow drink water” with each fry or else they all come out at once and cause his bag to push right off. He is 16 and had his first surgery 3.5 years ago. We learn as we go. Thanks
Hey Donna! Potatoes are my weakness, and they do come out really thick. Eating and drinking helps me too.
Always an issue for me. I use colomajic disposable liners with a 2 piece system. simply remove the disposable liner and replace. They are less than 0.05 cents a bag in Canada and they extend the time range of my bags
I’m new to an ileostomy. Please explain about disposable liners. Seems like less mess to deal with. Plus while out and about seems to be less burden. Which bags are they made for? I’m fresh out of surgery and the hospital since last week and surgery was on 3/25/17. All of this is so overwhelming. Ruptured appendix and bowel blockage with 24 window of losing my life got me a my very own stoma. Bleh. Life for me is blessed but I’m just learning.
Hi @jenniferfussell:disqus . I have a “mini guide” to pouch liners that may offer you some insight: https://www.veganostomy.ca/mini-guide-to-ostomy-pouch-liners/
Good article. Luckily I haven’t had this problem as I have an ileostomy and I drink a lot of fluids.
Many colostomates have this problem, but I sometimes have it when my output is really thick (I do NOT drink enough!).