Ileostomy bags won't stick and leak after a few hours... Help!

Since thursday my bags have been leaking and only after a couple hours... I've used adhesive remover, washed the skin, i use barrier wipes and stoma powder. I have a few different types of bags too and the ones that have worked well aren't even sticking.

Any advice would greatly be appreciated. I can't stand this and am afraid to go anywhere or sleep for very long bc of this.

allbluezoo has a good system and is pretty much what I do, with the exception of using paste.  I use Eakin seals and really like them.  Switching to convexity also stopped my leaks.  I get 7-10 days with my set-up.  In my testing days, I have gone as much as 12-14, but would not recommend going that long.

Make sure if you are using soap that it is not one with moisturizers in it.  I use Dial.  I have read others use Ivory or Neutrogena, but I have not tried any other than Dial.

I am also a firm believer in the use of heat and pressure when applying the wafer.  My hairdryer is my friend in this journey, being very careful to shield my stoma.  I use heat to dry my tummy, then to dry the Cavillon, then to heat the Eakin and apply it, and then heat the wafer and finally apply it.  I apply firm pressure for a solid minute once I put the wafer on, pushing all around and also using my fingers to push around the stoma to make that seal tight.   Then I alternate heat and pressure for a couple more minutes.   Sounds like alot, but it really isn't.   And, it really has helped extend my wear time which was only 2-hrs to 2 days in the beginning.

I have read that some put the Eakin and the wafer in their bra while preparing their change.  Another mentioned using the heating pad for 15 minutes after her change, if she had time.  I have thought of using the heating pad to warm my Eakin and wafer while I am preparing my supplies for my change.  I may just do that next time and see if that works as well as the hair dryer.  I would still use my dryer for drying my skin and Cavillon, though.

Good luck

The wound is packed and covered and doesn't leak as far as ive noticed. I had abcessess and then an infection and a softball sized hematoma around my bladder/uterus removed. I had a diff kind of bags and those didn't stick either. Idk if they were just a bad batch or what. I have the worst luck the past 6 months..

The home care nurses are not wound/ostomy nurses and don't offer much help... Make me angry bc i thought i would have a wound/ostomy nurse. I think i'm going to call the awesome wound/ostomy nurse from the hospital. I can't mentally handle much more of this crap (literally and figuratively). Crohns has effectively ruined everything in just a few months of my first flare. My marriage is just about the only thing thats good thats left. I haven't and still can't work, drive, go to school. I'm too weak and still healing bc of all the complications i've had. :(

Andi,

Just two things: you are going through the sstoma shrinkage time, and everyone goes through this and the bags will leak until the stoma stops changing size. I went through this for several weeks, sometimes having even 4 leaks per day.
And: yes - do get to your stoma nurse. She is going to help you find the right system that works for you and remains stable. As soon as the stoma stays one size and you have a reliable system, you can get on with life and this all won't be so traumatic.

Thanks for the advice! It is great to hear from other people who have had or do have ostomies. Im so tired of being confused, frustrated. Its so lonely even though i have support from people around me.

PS: I have the feeling you might do well using coloplast convex light plus eaken ring. It will accomodate your stoma's changes and "dancing".

Ive gotten a bag to stick for over 24 hrs... I'm hoping it can continue... Different barrier wipe thats actually sticky... Hoping thats the trick i need.

Saved my life? Probably. Will I be happy I got it? No. I know people are grateful they got one, i'm sure my husband is glad I got one. I'm not. I'm still weak, haven't gained any weight, still cannot work and am considering temporary disability at 24.... I NEVER would have before all of this but i'm tired of relying on my husband to support us and pay all the bills. It's not fair to him to work to support us and take care of me on top of it. I'm incredibly stubborn and won't be happy until i'm back to 'normal' and can work and take care of myself..

We're going to florida in may for a wedding and I'm dreading it. I won't be able to swim with the open wound on my stomach. And i love to swim. Sucks we're staying on the beach too. I hope i can at least walk upright and straight by then. I have a drain and dressings on my wound that makes it very uncomfy to do so...blah.

I also, gave up the powder. It was a lot of trial and error for me. I found that a thin line of paste is the best for me. I don't have to change for 5-7 days!

Sorry you've been having such a hard time -- in terms of the bag sticking, feeling weak, and missing out on so many of your plans. It is very frustrating. Things will get better! It sounds like they are already starting to get better w/the bag sticking longer etc.

One thing that I don't think anyone mentioned -- be careful with the adhesive remover. You have to make sure you wash it all off, or else it will remove your new pouch too. I don't use it usually -- I just take the old bag off slowly, peeling the SKIN away from the bag, not the bag away from the skin. Sometimes I use the safe and simple peri stoma wipes -- they have a mild adhesive remover in them that doesn't affect the new pouch sticking (these are to clean up when I'm not taking a shower at a pouch change).

As for bathing suits, a lot of people have had success w/tankinis, and patterns can help hide the bag better. I made my own with a pair of short running shorts w/underwear built in and a top w/a bra built in. The skirt style works well too, if that's more your thing.... I wear the ostomy secrets swim wrap over the bag, but a bandeau tank top would probably work just as well.

One thing I do that may be helpful, maybe not: at the end of each day, I write down 5 things I appreciated in the day. If it's a really bad day, they may just be things like, "I can walk" or a particular food I ate, on a better day they are more personal.... the goal is to just make sure that I keep a fuller picture in mind, and not solely focus on what's going wrong in my life. You have a lot of reasons to be angry, disappointed, sad, etc. and I think it's fine to go there and feel them fully.... but I cope better when I see that there's more out there than my distress. Again, take or leave as is helpful.

Oh, you can call the company and ask for samples of pediatric bags. Are you going to be getting all your supplies through the nurse or will you be ordering your own? I got things through the visiting nurses, but when I stopped having them, ordered my own.... then you can get whatever kind you want. If you order from a big supply house like edgepark, they can send samples too.

Hang in.

Allbluezoo- thank you :) my bags are clear tho... You see the poo and stoma. :/ what are the band things in your blog? I can't do regular pants yet because of a drain i have, but i want something to hide my bag when i do. I doubt it would have a problem fitting in waist bands of my pants i do have. I lost more weight since my surgeries. I'm 5'2 at a whopping 93lbs despite eating the highest calorie food i can get my hands on or order when we're out. My nurses I've had at home aren't wound/ostomy nurses and I've found they don't know much at all about ostomies and problems with them... Its incredibly frustrating that the person taking care of you can't answer your questions and doesn't help you out much. And I'm not saying that they are bad nurses either..

Bluegrass- thanks for the tip. I washed the remove off before this bag and its done pretty well. I have to use it because my bags have a tape ring around the sticky wafer. (idk if thats the right term or not) tape loves my skin and sticks to it like no other, but my skin hates it. My skin is incredibly irritated from the bags and tape. :/

I've lost 40 lbs since this all began and most of it was muscle i had so theres definitely a new body on top of scars, wounds, and a stoma. I haven't had a shower since february due to drains constantly being replaced in my stomach. The 'bird baths' in the sink are far from a shower and a shower definitely can make a person feel better. I've constantly tried to go back to work since I was diagnosed amd everytime I get close to doing so i end up back in the hospital and weaker than before. A bag not sticking has been an emotional problem because it makes me afraid to do the few things i CAN do at this point... I don't want to leave the house because of a possible leak. I'm glad everything is always dandy for some people. Yes, as I've said before i know people are thankful for their stomas. I'm sorry how I feel at this point makes some people sick. I don't want a pity party. I wanted to talk to people who can relate... And yes I needed to vent. No, I didn't have time from the time i was diagnosed until my colon perforated from severe crohns disease (my first flare ever) to deal with the diagnosis let alone changing my whole body and loss of functioning like i did before. Thank you to those who have listened and given me advice and shared their stories. I loved the fashion blog, because I will be doing the same thing soon after the drain comes out. I want nothing more than to be back to my old self. If I can finish nursing school and deal with working in a hospital after the past six months I was thinking about going to school to be a wound/ostomy nurse. Who better to be one than someone whos had one?

Andi - GET DIFFERENT POUCHES! They often keep you on the clear ones while in the hospital so they can more easily monitor your output and check the status of your stoma. Now that you are home do what you want!

I'm afraid to try different bags because everytime I have they leak because the wafer/thing that sticks to me is different and does not stick at all. My visitng nurse ordered more of the barrier wipes i got as a sample in the hospital and so far they've fixed my problem... I'm waiting for another to crop up because thats how things tend to work for me. I get one problem fixed and theres another right behind it... What should have been a week long stay got drug out into a 7 week ordeal at the hospital from all the complications i had. Abcessess, clot, pain management or lack there of to name a few.

Thanks for sharing the beach story you've got more guts than i do. I'm pretty much just mentally exhausted and haven't had a break since oct/nov. I've thought about talking to someone but its one more appt m husband has to drive me to because i'm still on pain meds, and hell can't do most stairs alone because i'm so weak and i dont want to get somewhere and get stuck... This has all been emergency everything pretty much and i'm just tired of all of it. To not have appointment after appointment w/docs, nurses, physical therapy would be fantastic. This feels like its been drawn out past what it needed to be... If one of my trips to the ER for dehydration from diarrhea would've been taken seriously by the ER docs (even they knew my colon wall had thickened no further tests were done until I made a GI appt....). If I could go back to october i would make myself an appt w/GI docs sooner and not wait to be crawling thru what i needed to do for school and work while going to the bathroom a lot. Can I change it? No. If i would have recovered by now and not had to have had two surgeries after i would be better off. I know me bein stuck in the house all day alone while my husband is at work is a big part of my problem. I'm used to go go go and now i'm stuck in park body-wise and still go go go with my brain. I hate not being able to drive and go to work the most and i'm not used to and hate relying on everyone else for pretty basic things. I will be estatic when I can get up in the morning, get ready and go to work... Who knows when that will be but I hope to god its soon. I'm going to drive just to drive because i can when i get off pain meds and am strong enough to get in and out of my house by myself. I'm not lazy and being weak makes me angry because i took for granted how strong i was and what i could do before i was sick... I highly doubt most psychologists/psychiatrist will be able to relate let alone understand that... And i am so tired of docs/nurses telling me how things will feel that they've never had done or how i should feel for that matter. I've had many kidney stones before and while in the hospital i thought i had another one and the doc i had told me he passed one yesterday and didn't order an xray, nothing. I yelled at him i wanted a different doctor because the pain only got worse (and i passed a 6 mm stone w/ ibuprofen and a heating pad for a week i've got a high pain tolerance...) the next doc got an xrayand found i was backed up with poo because that @$$hole knew my stool was thick from the ostomy and i was on a lot of pain meds which caused it never ordered a stool softener which is pretty normal anyways in the hospital. I won a horrible night on a powerful laxative to clean me out... Thats one of many screw-ups i encountered during my stays that has instilled a huge lack of trust in the medical field also.

On buying covers and other things like that... I hate to spend money that i haven't worked for on that stuff. Especially because i'm hoping the reversal surgery will be in early July. So it's not going to be used for long and i have no one i know i could pass the stuff off to... I'm cheap if I can be. Although a belt may be a nice thing bc the poo gets heavy sometimes and the bag pulls on my skin. Not a comfy feeling.

I'm not making excuses, i'm just tired and worn out. I wish i could take a vacation from my body. To recharge, be able to sleep how i want, to be able to walk through a whole store again and shop, and just be able to relax. But that is not possible, and just forcing myself through until the day I can do those things again is the ony choice i have whether i like it or not. And i know people are going through worse. Theres always someone worse off than you, but everyone can admit that even though you know that YOUR problems are more important in your mind at one time or another than someone elses... I don't think theres one person who can say they've been happy and optimistic the whole time they've been injured, sick, whatever. We're selfish. I put on a good face most of the time in the hospital because i hate worrying people and i'm just to the point if someone else can push me thru that'd be fantastic but i know i have to do it myself (before anyone gets undies in a bundle over that statement).

Don't worry about writing a book...sometimes you need to get that off your chest!

You will definitely want to try different pouches. Clear ones are preferred in the hospital and you should be able to get the exact same one you are using in opaque.

Have you contacted your local ostomy association? I bet they can hook you up with a visitor who could do a lot of help!!

Here's a link to find a WOC Nurse in your area:

http://www.wocn.org/?page=Nurse_Referral

Don't settle until you find someone to help!