I was fitted with a ileostomy in January and I am having major problems with leaking If I get 24 hours our of a bag I’m doing well I’ve been back to the hospital 3 times to see the stoma nurse. I’ve tried different bags and donut washers and glue strips but so far nothing works my record is 4 changes in 1 day and that’s happened twice. I’ve tried warming them with a hairdryer. Getting really down because of it. As every thing else is going good just need to get a bag that stays on for at least a day that wont leak, any advice???

Have you tried Coloplast?

I sincerely feel your pain as I am in the EXACT same boat and ready for suicide at the moment. I have gone through as many as 6 bags a day (4 is my average per day)and the longest I have gone without a leak is about 6/8 hours. My entire last week has consisted of nothing but showering, bag changing,leaking, showering, cleaning up messes, bag changing etc. I am at my wits end.

As a matter of fact it is 2:30 am and I am up as I had another leak. I have spent the last night and morning balling my eyes out as I attempt to yet make another bag work. I have tried everything, immodium to thicken things up, pastes, seals, barriers, sheets under the flange, convex wafers, flat wafers, different products, multiple visits from ostomy nurse etc.....all to NO avail.

I NEVER in a million years expected this to be so difficult and I had I known, and as bad as this sounds, I would have retained my colon until I either developed cancer and either died of that or something else...that is how absolutely desperate and despondent I feel at the moment.

Kjeane, I total sympathise with you, you must of been dealing with this for a lot longer than my two months of hell, It’s the leaks in the middle of the night with are the worst, I have felt pretty miserable myself a few times. I’ve tried coloplast bags with no joy. I have been told that a convex bag is not suitable for me due to the size of my stoma. But open to any other suggestions. I even tried running around the garden naked singing “God save the queen” during the witching hour to see if that helped! It didn’t!

Crash...thank you for the laugh.. I needed that today.
Another night..another leak..more laundry..mores showers...no sleep again...lost it on the ostomy nurse today.....miserable to everyone in my path....so far have one pouch that has lasted over 3 hours since this morn...praying today is a better day....I may sing the song today

Crashevans77,
I am one year post ileiostomy, am using a coloplast 2 piece without tape and a hernia ostomy belt and have not had a leak in a long, long time. I use a little powder with barrier spray if I have any skin irritation but if not nothing else. The less the better. I do change every 2-3 days but that is just by choice because I do not want any skin problems. Good Luck. I promise it gets better.
Diana

Dear Crash and Kjeane,

I am so sorry that you are both having so many problems. I can only relate to a degree as i have never had an ostomy only a child with one. He was 3 when he had his surgery and has now lived with an ileo for over 4 yrs. The beginning was a little bit of hell although no where near where you are. We did have lots of leaks though.
My questions for you are what products are you using and when are the leaks occurring?

I'll tell you what helped us the most. We switched to hollister extended wear new image line as it is specific to ileo's not colostomies and my sons output is all liquid. We ditched the paste, barrier wipes, etc... as all they did is irritate his skin and make the wafer less likely to stick. With the hollister line they actually tell you to not use any of this stuff. We do use an Eakin seal(made by convatec) but only because he has a loop ileo. When he had an end ileo we didn't need it. The loop has 2 opening although you may not even see the second one (we can't) and it leaks at the skin level going right under the wafer. We take the old one off with an adhesive remover and then clean that off real well with baby wipes. I know some people say you shouldn't use these but we always have and it works for us. Then we dry the skin with super soft paper towels or tissues....really dry. I then stick the Eakin directly on his skin followed by the wafer which i have already cut to size and the attach the bag. It is super important to use your fingers to press it down a few times and then what has helped us the most is for my son to lay flat for a while and let it really stick. You can use a heating pad to speed up the process if need be. I realize some of this is easier for me b/c I am putting it on someone else while they lay down and not on myself but i hope it helps some.
If you havnt tried the hollister call for a sample. The wafers are more cloth like instead of hard like some of the others and therefore seem much more comfortable.
If your bag is filling with lots of air at night set an alarm to get up and burp or empty your bag. We get leaks at night when we don't do this for our son. Lucky him, he still gets to sleep through it. We do have him sleep on a big pad to lessen clean up in the middle of the night if a leak does occur but its rare anymore.
I would be more than happy to help you anyway I can. I wish I was closer to give you both a hand as I hate to hear how awful things are for you both. Things will get better and you once you are able to get some sleep i am sure you will feel better as well.

Going to post my products and process in hopes this helps you guys. This has given me 3-5 days easily every time.

First, when it is change day, I use either the hollister universal remover wipes (product # 7760) or Allkare removal wipes from convatec. I completely clean all around the stoma and the surrounding skin. Usually takes 2 wipes to complete. I then hop into the shower and use Ivory soap on everything. It's nice taking a 20 minute shower and not worrying about what the stoma does

After the shower, i dry the skin with a hair dryer or just some gauze sponges. Once dry, i apply a skin barrier called Sureprep. It is a wipe that basically shellacs the skin. I usually use 1-2 based on how my skin feels. It takes about 2 mins to dry. Once dry, i apply my stomahesive powder.

I use the Hollister 2 piece system (#14603 barrier and 18113 pouch) as well as the Adapt rings( hollister # 7805). I put the ring on the back of the barrier and then press it over my stoma. I keep a small garbage can with a bag under me in case my stoma decides to be a pain in the ass or i do all this over the toilet. Takes about 5 mins and seals awesome. I keep my hand over the completed pouch for about 5 mins after to help warm it and seal.

I hope this helps you guys. It does get better and easier. Hang in there. My loop also points down , but away from my incision and belly button. It is also positioned very high on my Stomach, roughly 2 inches above my belly button and off to the left.

Best to you

derek

can you try to find another ostomy nurse. I have found some helpful, some not. try another one. new people, new ideas.. surely couldn't hurt.

also sometimes there are helpful people available on the other end of the manufacturers phone. for example call coloplast and ask for an ostomy nurse, do the same with convatec, and hollister. they too may have ideas. keep a log of what you have tried and not tried and with what limited degree of success any of it might have had. and consider two changes a day rather than four success right now.

also make sure you are not covering the mucousy part of the second opening on the loop. you may have to cut a notch shape out to fit it around that.

also you really must try to thicken up things. pay attention to your diet.. etc.. you may need to do a lot more than just pop immodium. rice, pototas, bananas, peanut butter, oatmeal, absolutely no sugar, no fruit juices, no hot liquids.

let us know where you think its leaking and maybe we'll have a few more things that might have worked for us. its not easy. i've been there. two months of this trial and error game with nonstop leaking... and finally i can keep something on for a whopping 1.5 days. but I'm happy with that right now.
keep trying.. it will get better.

Thank you everyone for your helpful posts.

Four changes today and finally, may have one that may makes it through the night.....crossing fingers here.
Last night for some odd reason, the appliance actually came off...never happened before.

I too am using hollister flanges 14803 and 14603..more luck with 14603. I am ditching the paste, except around the seal as I am waiting for ekin seals in the mail. I also use the adhesive powder as I am very irritated. That irritation I can deal with. It is the skin ulceration right beneath the stoma that is killing me. I will try a better notch shape around that part of the stoma to see if it helps.

I have really been watching my diet and eating pasta, potatoes, breads, peanut butter, some chicken, tapioca pudding, applesauce(which I am gong to ditch also) and faithfully taking my nexium and now immodium and I also take align (a probiotic). The 13 pounds I lost after surgery will surely be packed on with this diet . I still have very watery stools at times. This concerns me as when I have my takedown, I am worried I will be resigned to a life with pasta and potatoes.

I am going to NY tomorrow to see the ostomy nurse as I really bit her head off today on the phone and feel badly about it. My visit was planned for tomorrow anyway.

The mucous opening and the very low outlet on the top stoma is what is killing me. It is always so weepy, that I cannot get a good fit and the liquid just seeps under the flange. Even the dermablend patches are not really helping at this time.

I sooooo appreciate everyone's suggestions. Without this board I would be in such despair.....

I don't use this one, But some others are really excited about this new FormaFlex hollister product.

http://www.hollister.com/us/pr...amily=10&series=1111

Thanks for all your advice and support. just recieved some samples from hollister. hopefully these will do the trick. I have found that keeping it as thick as possible is haveing a good effect! current bag has now been on for 24 hours!

Crashevans,

Are you taking any immodium? I started on 2 tablets a day and I also finally found an appliance that works, but the ostomy nurse put it on yesterday and I am on day 2 also. I am so afraid to change it myself tom for fear I may have leaks again. What are you eating to help thicken things up. It seems no matter what I eat that is supposed to help thicken things up, it is not consistent and sometimes it is thicker and other times just liquid.

kjeane,

I have dealt with the loop since November now. Nothing i have eaten thickens things up for very long. My output is so much liquid that i am drinking 200 plus ounces of water each day to stay hydrated. Just the nature of the beast for me thus far.

4 weeks to go though. I have found the best way to handle this is by eating everything in sight

keep hanging in there.

Derek

Dtmack,

It seems I cannot get regulated here. Sometimes I pass so much liquid and other times it is very paste like.

I am trying to keep my fluids up to and still seem to be struggling with leaks. I told my husband today that I can program software for computers but cannot get an ostomy bag and flange to fit without leaking....GEEZ........

My appetite has has been good, but I am a big fruit and veggie gal and all this starch and stuff is putting some pounds back on me. Not sure I am happy about this at all.

Here is to about 10 more weeks of madness and hopefully take down soon after.