major leakage problem and need advice and comfort that it will get better

tkctwbd--I am so sorry you are having problems!!! No one has to live with leaks, so I am going to start with some suggestions/comments and others will be along

When cleaning the area around your stoma you should only use a soap that doesn't leave a residue (Dial/Neutrogena/Ivory). Also, what are you using to clean the area? if you are using a cloth that has, say fabric softener, it might leave a residue that keeps the seal from taking. I personally just use the Bounty "cut to size" type of papertowels and Dial soap.

Are you using skin prep/adhesive remover/powder? What type of pouching system do you use?

Also, you mentioned you stomach is flat, but it is more important to follow how your stoma is...is it short? does your skin around it dip in? I am asking these questions because even tho your stomach is flat, you might benefit from some convexity...and, you can use a two piece with a flat stomach...its up to you which you prefer.

Lastly, you really don't want to go that long with a leak. The skin starts to breakdown rather fast and going all night and half the day will cause skin issues...which if allowed to continue will also lead to leaks.

Your back will hurt for a while...you had your colon removed, right? Just take your pain meds to keep yourself comfortable!

Let us know what you are using and we can get you some more answers

Thanks Ohio
All nurses say change bag immediately when leaking but I have no choice as I am so tired at night. I just don't have energy. I can't deal with it and so far so good. Right now, changing bag immediately is not an option. Please understand I am overwhelmed with the leak and tiredness and cannot deal with changing bag at night. Bad enough to change it everyday This is my thinking about leaking and changing. I can change the bag, but it will leak again because I do not know what is causing it. So if I change, it leaks, I change, it leaks. All night I would be doing this, and I do not have many bags. That is why I decided not to change all the time. I am now out of bags.

They say my stoma is very very very small. It is shape like eye ie oval. Shaped like the eye in the CBS logo. In mirror looks like stoma is flat to skin or flush with skin. This morning there appears to be one eighth inch band of inflammation around the stoma. HH RN did not seem concerned over phone about this.

I was told not to clean area with anything but warm water. It takes few min. to get the stool off belly but husband is gentle and does good job. We make sure it is dry, then apply paste on bees wax on bag and place bag over stoma. Press down all way around, then put on heat for fifteen min for seal to seal. Then Im all set. But HH nurse suggested putting some medical paper tape at top of bag to keep it from weighing down.

I am using new bath cloths to clean, but I did not wash them after buying them so maybe they have something on them from factory; however, I leaked first night home after nurse cleaned area in hosp, and she knew what she was doing. That is why i think it is either elevation or perspiration.

Pouching system? Is that brand? It is ConvaTec, custom cut pouch, transparent with clip. I have to take a template the nurse made and mark bag, then cut the marked area. I have one piece bag. Then, make sure area has been cleaned with water, then dry well, then place paste on bees wax and place over stoma and press all around. Then apply heat for fifteen minutes.

the box came with bottle of powder? It says Stomadhesive protective powder. Also some wipes that seal or something. I don't remember but nurse showed me. I just don't remember what it is for. She took powder and powdered her gloved hand. Blew away powder and patted the wipe over the powder. Seems like she said it made a seal, but I don't know why I would want to use this.

My bag was suppose to last five days so I am out now. HH nurse coming tomorrow with bags and paste. She will go over everything with us again. Hopefully, sleeping with head elevated will prevent leakage. Wouldn't that be great!!!!!!!!!

I have used little pain medicine. Hosp really surprised at how little pain medicine I used. But yes, colon removed in preparation for j pouch. Surgeon said I had unusual arrangements inside and it took while for him to make my j pouch. Anyway, I believe the back pain is tiredness as it just started when can't relax when leaking. I get tense. It's scary because I have NO CONTROL. I like to be in control. I am getting more use to this, but I don't like not knowing what I am doing and not being able to manauver well because of recent surgery.

Does any of this help with suggestions? I'm still wondering if it could be night sweats causing a break in seal.
Even if I change the bag it will leak again. Why waste another bag? I am out. One bag was suppose to last five days so I have to be very frugal with them. Live way out in country. I am rattling on but hope I say something that helps for suggestions.

foods that will thicken it up are starchy things, like potatos, or breads, bananas are good for that also. 

As for your leaks, i dont think its the perspiration that is doign it, because i sweat an awful lot sometimes and so far it hasnt caused me any trouble.  As for the laying down, i dont know about that.  Leaks do happen more at night, but its usually because people arent paying attention and let the bag get too full.

The wipes adn the powder are for when you have skin breakdown, and using them will shorten wear time.  So i wouldnt use them right now if i were you.

It is possible that the hole is being cut too large, and that can cause a problem. 

keepign heat on it for 15 minutes isnt necessary, i use the hair dryer for like 1 minute on it, and then press dwon and rub around.  I did find that laying down is much easier to change. 

I have to agree with everyone that you shouldnt leave the leak on you like that, cause it's gonna break your skin down and then you will never get a good seal.  But if you are out of bags then i suppose you dont have a choice.

i'm not sure what you mean when you say bees wax.

i hope you get some help tomorrow!

I wonder why the nurse told you not to shower. The surgeon told me I could shower while I was still in the hospital. I shower with the bag on and don't cover it with anything, and on change days I set all my changing gear out and then take off the pouch and wafer and shower without anything on. It feels good. The first few days home from the hospital I would have to go back to bed after the shower because it would wear me out. But, at least I felt clean, which always makes me feel better. Summer listed foods that will thicken things up....things that seem to make output more liquid for me are apple juice and a few thin mint girl scout cookies that I couldn't resist. If you can tolerate ensure it will give you a boost of protein and vitamins, which you need. As far as wrapping yourself in plastic, maybe she means using Saran wrap?

In a pinch, I can change my bag in under 15 minutes. My problem with doing it quick, is I don't get a good seal. I have gotten 8 days wear, once out of an appliance. I have an ileostomy.

Here are my thoughts on your problems, with getting a good seal. Please realize, i'm very new to this, but this is my two cents. One, whatever you do, do NOT lay with stool on your skin. You will lose skin very very very quickly. I speak from experience. Two, when you change your appliance, I find doing it in bed, is the easiest. But make sure there is something leak proof underneath you, so that should you have an explosion, you don't have to change your sheets (oops!!). Three, make sure all of your skin is intact around your stoma. Also, make sure it is DRY. DRY is very important. If it isn't dry, you will not get a good seal. I use plain white paper towels. I have used toilet paper, but didn't get as good of a seal. I've used washclothes at the hospital, with poor luck also. But now that i've started using plain white paper towels, and water, i'm having better luck. Three, just because you have a flat tummy, you do not have to use just one type of an appliance. I use a one piece, convatec appliance, with convexity. I also wear a belt with it. Four, I use heat, and lots of it around my appliance. I have a blow dryer, that I turn on warm, and blow dry around the appliance after I apply it. I use a minimal amount of paste. I have a divit beside my stoma, where I tend to leak. I apply a bead of paste there, and when I put the eakins seal on my appliance, I pull out a piece at the top, and roll it into a bead, and put it on the appliance where I tend to leak. I also have some medical spray adhesive that I spray on my appliance, and the eakin's seal, to help things stick. I only clean my skin around my stoma with plain water, and paper towels.

I keep a roll of paper towels, beside me when i'm changing my appliance. I have several wet ones, but most are on the roll still and dry. I only use the wet ones to clean off the old paste and any stool that leaks. I have several different templates I use, I draw that on my new appliance, and cut the hole before I remove the old one. I then apply the eakins seal, spray adhesive, and then take off the old one, clean up any messes, and make sure everything is intact, and dry my skin. Then I apply the new appliance. The biggest thing i'm always looking for is any sign of skin breakdown. Before i apply the appliance, I take a dry paper towel, and dry all my skin, again. After I put the new appliance on, I take the blow dryer, and warm the whole appliance, and apply Hy tape around the edges, and put my belt back on. Whatever you do, don't use the blow dryer with your belt on. You'll melt the ears. <G> (oops!!)

My stoma was very flat, and sunken in when I started with the new wound care center. She's now poking  her head up all nice and pretty. She's a double barrel, and the mucus side is where i'm having leaks. Until I started using the convex appliance, and a belt, I was having a lot more leaks. I didn't go eight days. I was lucky to go 24 hours.

do you have a wound care nurse, who specializes in ostomies who can help you? Home health nurses aren't always the best to help you with your ostomy. I'm a nurse, and until I had this, I didn't know a fourth as much as I do now about appliances and taking care of stomas. There are multiple types appliances out there. Keep trying, and good luck!!

Good luck!! it does get easier, and better.

So sorry you are having trouble -- it is such a lot to adjust to after surgery, everybody's body is different, and it takes a while to figure out what products you need.

I would definitely recommend trying a convex wafer. I had a period of time about 2 months after my surgery where I was leaking every night, after ZERO leaks before that, and apparently my stoma and body were still changing/healing, and once I changed to convex, no more leaks. I now get 5-7 days out of each wafer and pouch.

Also second the idea to use non-linty paper towels to dry the area around your stoma when changing things. My home RN recommended Viva brand paper towels, as they are less linty than others.

I also have had good success with Adapt barrier rings, which are similar to the Eakin seals. It's a pliable/waxy ring that you place around the hole you cut in your wafer. Helps the seal so that stool doesn't leak under onto your skin.

Sounds like you have a wonderful husband who is helping to take good care of you. Hang in there, it will get better.

I think you should try a different brand of pouch.... try one with a bigger ring of "Bees' Wax" on the part that goes around the stoma....it may last longer.

When I have leakage problems, it is usually not caused by the stoma output, but rather from a clear fluid that was leaking from around the stoma, as if the skin and/or tissue around the stoma, was seeping a bit...like your skin does when it is healing from a wound. Eventually, I found the right pouching system and I rarely have problems now. It did drive me crazy sometimes, like the weekend I had to change 6 times, and I was on vacation in Utah!!! I thought I might run out before I got some more pouches, so I really tried to make the pouches last as long as possible.

Good luck, I am confident you will get things dialed in...

there are lots of types of bags, your ET nurse will help you. the home health care can help you, but as a general rule they aren't experts on ostomies.
You can also ask us all the quesitons you want!
as a general rule, less is more with this stuff.
What i use is the Hollister NuImage Lock and Roll, two piece.
And the only other thing i use from them is the paste. I dont use any wipes or skin preps or powders.

what did hollister send you?