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Help, constant leaks

Posted by Gemd, on Sat Dec 29, 2018 7:06 pm

I have had a leak a day since my bday (dec 26. A leak was not a fun bday gift!) I usually use the opaque beige one piece trainable pouch hollister. But I tried convatec's simular version. Both have leaked. I change my pouch daily now because each pouch doesn't last even 24 hours before leaking. My output is normal amount and texture so what gives? 

Past Member
Reply by Past Member, on Sat Dec 29, 2018 8:07 pm

Hi Gemd

I have had crohn's disease for 50 years and an ileostomy for 38 yrs.  I have experience leaks for the past five years.  I tried everythihg!  Every product.  Nothing worked for me.  So now I am using three different kinds and the one that works (longer time frame) is Hollister 8661 (precut) to fit my stoma and the Bravo protective Seal from Coloplast and then use the Bravo Elastic Barrier Strips (half moon) also from Coloplast for more extra protection!  The Barrior has to be perfectly surrounding the stoma or it will leak.  I also began to eat healthy but smaller portions and pray often.   

The thing with being a believer in Jesus Christ is that even though I've been through it ALL...I am blessed with a calm and understanding that it all works out for the good.

I hope things work out for you and may God bless you and the new year!

Reply by Gemd, on Sat Dec 29, 2018 10:00 pm

I will look into the half moon as I use the protective deal...I think? It's like a gummy bear but donut shaped . And yes Jesus has been with me through this all....stage 3 cancer, 3 organs removed, celiac (or ??? My mucosal folds in my colon were flat), but i am still here to do His work. Amen to that and have a blessed 2019! 

Past Member
Reply by Past Member, on Sat Dec 29, 2018 10:43 pm

Wow!  We are similar in what we went through and our faith is great, I can honestly say I don't know any other kind of life.  I have always been sick with the worst severe crohnic crohn's disease a person can imagine, I can go into a grocery store, department store and have a leak and I just park my cart look for the ladies room clean up with safe n simple wipes, smith and nephew skin prep wipes change the pouch wash my hands and carry on with my groceries!  It became my normal and I don't know of anykind of other life anymore.  In my 20's I use to cry and fall to the floor at the mercy of God through Jesus and have  anxiety, you name it. I forgot how many times I've been hospitalized at least 20 or 25 times.  But with time and prayer and loving on other people somewhere along the way I was saved.  Now I am just thankful to stil be here and loving my life anyway!  One day at a time.

You have a good attitude and if ever need any help or questions, please send a message!

Again, take care!!! God Bless YOU :)

 

Reply by Puppyluv56, on Sun Dec 30, 2018 12:12 am

Gem, 

i am using the Convetec two piece!!I have not had the first leak since I started using them in June! Two piece usually last me 6 days each. Once in a while I will go 7-8 and on occasion, I have changed on day 4 or 5. Not often though. I always liked the Coloplast bag so I have just received them but have not used them yet. This week. I also use the Bravo Y strips for extra confidence but the pouch flange itself has not leaked to require the help Morning the strip. I tried the rings but I think they weee worse than without! Call Convetec, and Coloplastbto request samples if you have not tried them yet and Hollister for a sample of the two piece! You may find them better! I hope you find the answer! It is horrible to not be comfortable leaving your home! 

Reply by countyclare, on Sun Dec 30, 2018 12:18 pm

Unless you're having excessive amounts of liquid output, you really should not be having leaks if your applying the pouch properly. 

Also, avoid eating or drinking anything several hour before going to bed. Eating or drinking prior to going bed can cause leaks because you are laying horizontally.  You may want  to consult with an enterstomal therapist (nurse) in your area for instruction / advice..  Best of luck. 

Reply by Longroad78, on Mon Dec 31, 2018 12:54 pm

Gemd,

You are going through so much and am greatful your staying so strong. Hope this helps a little.

I change my appliance out in the morning but to remove it I take a warm shower and let the water heat up the adhesive up and it comes off without having to use adhesive remover, it also allows the area to be cleaned off really well, no mosturizing soap because it can leave a firm that might cause a issue with adhesion. Wrap your stoma with tissue or toliet paper when you step out just it case when drying off and getting around in cause your friend has a mind of it's own. I use the coloplast sensura mio click but I learned with the cold weather we are having in Texas that the last two changes I am having issues with the adhesive sticking good close to the inside near the stoma. I use the paste product around the stoma. I found that my supplies were cold and the adhesive is temperature sensative. The colder it was the less sticky. The half moon adhesive stripes have saved me both times from a full out failure/ leak. I could feel my skin burning from the output but the half moon stripes stopped it from leaking out. Coloplast makes sensura Xpro click which is a extended wear product not the mio system. To me the adhesive was stronger and it is more resistant to the acidity of the output, give it a try they offer samples of that product. 

Great Luck hope this helps.

Reply by Axis308, on Mon Dec 31, 2018 5:54 pm

I had the same issues at one point. I switched to Convetec two peice with the moldable flange. I also use a Hollister adapt barrier ring as well and have not had any issues since. 

Reply by Gemd, on Tue Jan 01, 2019 1:31 pm

The cold Texas weather makes sense. Maybe I can use a blow dryer? 

 

I eat well before bed but..well my stoma produces right after I eat, a little output, and then 6-8 hours after a meal, I rid of that meal. But I have to have dinner and eat more often than 6 hours apart (seems my blood sugar crashes more easily without a colon) and cant eat dinner at, say, 3pm. Oh well. 

Reply by Longroad78, on Tue Jan 01, 2019 4:27 pm

 Sound like your stoma and digestive system is working like normal on your intact and output timing, do not feel like you need to stop eating and starve yourself to allow you a window to change your appliance. Just eat your normal meals but do not do like I do and eat large meals and to few of meals through the day. Do your normal small meals throughout the day and just do not eat to heavy after a certain time at night. You can still maintain your blood sugar levels. You probably see the normal predictable output at night and see in the morning your stoma is a little slow before the first cup of coffee and breakfast. Use that time to change things out. On the hairdryer I have heard people use that or a heating blanket or just placing their hand on the finish appliance to warm things up. I am checking on if it is the wafer is to cold to start off with before I use it and also if I am not able to put presser on the inside area closest to the stoma to allow the glue to adhere to the skin in that area allowing the output to get around the paste. Might sound strange but makes sense, one person I talked to uses a piece of pvc pipe fittings to go around  his stoma to push the wafer against his skin better and more evenly and that fixed his problem. Have not tried that yet. 

Reply by maddie50322, on Wed Jan 02, 2019 6:53 pm

Leaking is not uncommon, but should be minimal whe using the right products. Hollister products are the cheapest out there, which is why hospitals stock them. I personally don't like them. I have a few tips. The first is re-measure your stoma and see if it has changed size at all. The next is keep on trying samples until you find one that works for you. Most people love the coloplast products. Try a convex wafer vs a flat one. Use adhesive spray (glue basically ) and barrier strips. I use both of those and that was a game changer for me.  I went from 1-2 time daily changes to 2 changes a week on Monday and Thursday

Reply by Puppyluv56, on Sat Jan 05, 2019 10:27 pm

My hospital uses the Convetec one piece which are the crappiest pouches made! They leak and are only usable in the first week or so after surgery when you have little to no output! I Love the Convetec two piece but the pouch looks like an old sweater by the end of the week. It frays and looks picked! No leaks since I started using them In June!  I love the Coloplast two piece pouch so much better. The material is better, the closure is easier but I hate the clip in system. Convetec is easy but that click think is horrible on Coloplast! I cannot just burp the pouch for gas it is a trip to the bathroom to deal with the whole thing! I had the bright Idea to change everything over to Coloplast and now I am stuck! I will go back to the Convetec unless I get used to these. Hate to give that pouch up! 

Leaks will be the deciding factor! Above all else! That is what makes or breaks it for me! 

Puppy

Reply by Gemd, on Fri Jan 11, 2019 8:42 pm

I'm on Hollister opaque one pieces still even though I probably get a leak a week.  I tried convatec's newer opaque bag and loved it, no leaks, but then it was just a single free sample so who knows. But new year, new insurance deductible, so Hollister is more affordable at $38 for ten bags...sigh...those nice convatex ones were almost $100! So until my chemo costs rack up and I meet my deductible, its pricey-enough leaky Hollister. Luckily my diarrhea subsided so that lessens leak frequency.

Reply by Puppyluv56, on Sat Jan 12, 2019 2:21 pm
Gem,
Call Coloplast and ask for samples of their two piece drainable pouches and one piece convex pouches and their Brava y barrier strips! ( these two piece with y strips last me 10 days each now, no leaks! ) They will send you three of each. Since you have had the Convetec one piece as samples, ask them for samples of their two piece. That will give you a chance to try some really good pouches and the price may be worth it if you are using ten times less!
Puppy
Reply by iMacG5, on Thu Jan 24, 2019 11:32 pm

I use the same system as Axix308 with very good results.  I posted "Eakin Seals or Hollister Adapt Flat barrier Rings" some time ago.  Some folks replied with helpful information.  I think it's worth checking out.

Respectfully,

Mike

Reply by Puppyluv56, on Fri Jan 25, 2019 9:24 am

Gemd,

I started using Coloplast two piece system at the beginning of the month. The first pouch I replaced after 11 days and the second I still have on. Being my 15 day. No leak in sight. I did use the suggestion someone(was that you mike) made here about the barrier rings, cutting in half(I cut in thirds) roll into a rope and wrapping around the outside of my stoma, then applying the flange. Seems to work really well. I will use a little more next time to make it thicker but otherwise, works well. I am not crazy about the click system on the Coloplast pouch. Cannot not burp as easily as the Convetec but love the pouch more!

Gemd, this would work well with those Convetec cut to fit as well! Probably get you at least a couple extra days from each!

how are they working for you?

Puppy 

Reply by iMacG5, on Fri Jan 25, 2019 12:05 pm

This might be just a little off topic but I eliminated the typical burping method by using KMEZVENT vents.  It's a little work to prep the pouches with these vents but way easier to burp.

Let's never stop looking to make our stuff better and easier.  I think we deserve it.

Mike

Reply by iMacG5, on Fri Jan 25, 2019 7:53 pm

Hey Puppyluv, the Eakin Cohesive Seal 2 is a lot thicker.

Mike

Reply by Puppyluv56, on Fri Jan 25, 2019 9:09 pm

Mike, 

Is thicker better? The two piece flange is already think and sticks out more than a one piece. I have tried a few different types of them and and found no benefit unit I tried the rolling into a rope and building it around the stone. The ring did not stick to my skin any better than the pouch barrier. Does your ring actually stick to your skin along the stone?

candy

Reply by iMacG5, on Sat Jan 26, 2019 4:45 pm

Hi Candy. I probably confused thicker with wider. When I flatten the rolled up barrier ring it’s only about the thickness of a double match book cover; like two covers, one on top of the other. It's actually about 5/64 of an inch (0.2 cm). The flattened seal is about a 3/8 inch wide. Close to 1/2 inch(around 1.3 cm). No, I don’t think thicker is better.
I tried the rope method a long time ago with little success. I think it’s failure was due to the “sweating” of the stoma. I know it’s not sweat but it’s always wet and could interfere with adhesion.
More good luck to all of us,
Mike

Reply by Puppyluv56, on Mon Jan 28, 2019 11:29 am

Thanks Mike, 

I am trying the barrier ring as a whole now! Will see how it works! Got 17 days from the last pouch with using the rope made from the ring. Probably could have gone longer but due to my own stupidity, of realeasing gas by uncliping the click pouch at the top, in the night, with no light, on the way to the bathroom, to find out it was not all air! Don’t laugh! Shit happens! Literally! LolHad to change at 3:00 in the am! That will teach me! I was just seeing how long it was possible to get out of one pouch! 

Puppyluv

Reply by iMacG5, on Mon Jan 28, 2019 3:17 pm

Hey Pup, most ostomates can't even imagine going 17 days between changes.  I'm nominating you for the poster child for THIS IS HOW IT'S DONE.  Great to know it's possible.  We read so often about folks changing daily and more.  You are an inspiration!

Thanks so much,

Mike

Reply by Puppyluv56, on Mon Jan 28, 2019 7:01 pm

Haha Mike! Thanks for the crown! Not worthy though! My own stupidity ended the run! Haha! Ya have to laugh at yourself sometimes! I have always gotten good time out of two piece pouches! The one piece, not so much ! I don’t ‘t use powders, glues,paste , rings ( just now trying them, not sure why) barrier wipes! All I do is use the adheasive remover wipes, dry and put on a flange after cutting to fit of course! Works for me! 

Thanks, 

Candy

Sjb
Reply by Sjb, on Fri Feb 15, 2019 3:03 pm

I had daily leaks as well until i switched to a two piece with a belt. I also use a cera ring tbat helps seal better. I have a huge hernia also. Tbat piece of elastic provides just enough support to keep my device from leaking!!  I made my own belt with a wide piece of elastic and larger hooks to attach to loops. 

Best of luck! 

Reply by Puppyluv56, on Fri Feb 15, 2019 3:57 pm

Ok I have to tell on myself because my actions led to an accident waiting to happen, me! I sent this to my friend and just had to copy to tell on myself! Well , I am hoping your Friday has gone better than mine!! I have to just keep in mind, it IS Friday!!!!
Drank my water like always. Start about an hour ahead of my appt! I was hungry and had not had any Honey Nut Cheerios in a long time! BIG mistake! Lol In my defense, I did also eat a banana! I was half way to treatment and those Cherrios started to come on back! That was fine so I immediately went to a back bathroom in the practice to empty my pouch and hopefully NOT Pee! Have to have a full bladder for Radiation. Had to pee soooo bad! Did not think I could make it thru treatment so emptied my bladder some. Just could not stop at a little bit! As I was on the table getting treatment, more cherrios came for a visit but since I had peed prior to treatment, I did not go back to finish emptying my bladder afterward thinking I could make it home. Well, all the way home, cherrios continue to visit to the max and having to pee again so bad! I could hardly make it in the door! Made it to the bathroom, almost! Lol Started peeing before I could get my pants all the way off but finally got there!
As I am taking my wet panties off, I notices those damn cherrios were not only inside the pouch but broke out of jail to surprise me! It was a surprise breakout but I had just got comfortable not using the barrier strip! May have to rethink that! Lol
Haha! What a surprise that was since it had not happened in over 8 months!
So moral of this story is DO NOT EAT Honey Nut Cherrios! EVER!!! Pee when you gotta!
Hope you are laughing at my expense! I would be laughing if it was you! Just who I am!
Have a better day than me! Lol

Reply by looking forward, on Sat Feb 16, 2019 9:48 am

that happens to me as well but i have also gone as long as 5 days.. use the barrier strips and econ 

Reply by Puppyluv56, on Sat Feb 16, 2019 3:10 pm

Looking forward!

I normally go 10 days minimum between pouch changes! That is without strips and barrier rings! Hahaha! This was just a BAD food choice! They would make you go the same prior to an Ostomy! 

Just a funny day! Whew, glad it was over! Lol

Puppyluv

Reply by spyder, on Thu May 09, 2019 5:25 pm

Tfestylery using active lifstyle adhesive covers helped me

Reply by spyder, on Mon Jun 03, 2019 5:06 pm

The active lifestyle covers are the best

Reply by Indigo55, on Wed Jun 05, 2019 3:51 am

I have an ileostomy and occasional nuisance leaks, and you made me think with your comment about not eating or drinking too much before bed. Never occured to me that lying down could be a problem.

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