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

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

tkctwbd
Regular Member


Date Joined Dec 2007
Total Posts : 82
   Posted 3/9/2009 12:29 PM (GMT -6)   
surg one week ago today.
Hosp ostomy nurse says I will need one piece because my stomach is flat. but Home Health ostomy nurse disagrees. Regardless I'm using one piece.

In hosp no problem and bag last 2-3 days, and nurse said bag should last me five days.

First night out of hosp and every night since, I leak. I have been dealing with it the best I can because I am tired and don't want to deal with changing bag at night. So I get towels and rags etc to soak up stool. Husband is learning how to change bag as I lay flat on bed around noon the next day. I think he does well.

I'm also not eating after around three in afternoon because I dont want to leak. I wan't little in my intestines.

I am so tired and now back hurts because of tired. Cannot sleep well when leaking.

so I think leakage is caused by one of two things:

I'm a moisture person, ie perspire a lot. Lots of moisture in skin. I just produce lots of moisture which keeps my skin young looking. but I wonder if I perspire at night (I know i do) and perhaps I perspire under the bag around the seal/paste; thus the seal is broken.

The other cause could be that in hosp my head was elevated slightly at night but at home i sleep flat; thus I leak. So I plan to sleep with elevated pillow tonight in hopes that bag will not leak and I can get sleep and not be tired.

I know I'm not the only one in world to have a leakage problem. I thougth at first I was the only one, but that is not realistic. If anyone has any suggestions and give me support I'd appreciate it. I will not have quality of life if I leak when I go to sleep the rest of my life. I will not want to live like that.

thanks for help

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 3/9/2009 1:04 PM (GMT -6)   
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 scool

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 idea

moreglorydays
Regular Member


Date Joined Feb 2009
Total Posts : 38
   Posted 3/9/2009 1:51 PM (GMT -6)   
tkctwbd- I am so sorry this is happening to you. I had a leak with the first change the ET nurse did in the hospital. I couldn't tell at first if it was a leak, or if my incision was oozing (although I did smell something funky, but my husband said he couldn't smell anything). A different ET nurse changed my pouch and wafer the second time, and she showed me how to use Stoma paste around the edge of the opening in the wafer. She concluded that I needed a little "caulking" to have a better seal. I have had no other leaks, and use the paste every time I change my appliance. I have been changing things every 5th day. I also use paper towels for a final dry after washing my skin around the stoma with hot water and a washcloth while taking a shower. I figure the paper towel will remove any residue that may have "rinsed" down on the exposed skin as I wash the rest of my body with soap. I use a two piece system. I have had night sweats a few times since being home, but this hasn't seemed to cause a problem with my pouch. I put my wafer and pouch on standing up - don't know if that makes a difference or not. Please make sure you eat enough to help your body heal. Maybe you can eat foods that help thicken your output after three PM. Hang in there and be good to yourself.
scheduled for permanent ileostomy surgery 2/19 proctocolectomy with permanent ileostomy 2/19
tried asacol, rowasa, remicade, humira
currently on 40 mgs.10 mgs. prednisone, 20mgs and tapering every ten days
51 years young


tkctwbd
Regular Member


Date Joined Dec 2007
Total Posts : 82
   Posted 3/9/2009 1:58 PM (GMT -6)   
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.

tkctwbd
Regular Member


Date Joined Dec 2007
Total Posts : 82
   Posted 3/9/2009 2:18 PM (GMT -6)   
moreglorydays
Nurse does not want me to shower. I need a shower but afraid after nurse said not to. Do you shower with or without the bag? Let me know about a shower. I want to shower so bad, might help my back. Maybe it is soap residue from shower is reason nurse does not want me to shower. I hadn't thought of that. She said to put plastic around me but I can't visualize doing that so I have not. Have no idea how to put plastic around my body.

I'm still draining from my butt. Mucous type, little pink; I'm not worried.

I use paper towels too to dry area and they work quite well.

Sounds like from what you said that the nurse needs to change my type bag or add some chaulding. They need to do something because I just can't live like this; even sleeping with head elevated is hard. It is hard to get comfortable.

I have always changed bag lying down. Perhaps nurse tomorrow will want me to stand up. I leak only when sleeping in bed. During day, I am fine.

Yes, I know very well the danger of not getting enough liquid and nourishment. I'm drinking water now until bed. I may drink can of ensure.

What food will thicken up stool?

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 3/9/2009 5:01 PM (GMT -6)   
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!

tkctwbd
Regular Member


Date Joined Dec 2007
Total Posts : 82
   Posted 3/9/2009 5:43 PM (GMT -6)   
Hi summerstorm
I set clock to go off at nite so I can get up to empty bag, but after three hrs of sleep, it starts leaking before the alarm goes off.

So glad to hear that perspiration probably is not problem. I have no control over perspiration.

Glad to hear that 15 min of heat is not necessary. I met nurse at hosp who has had ostomy for 35 yrs. She made life with ostomy a breeze, so I wondered about the 15 min part.

HH nurse comes tomorrow with supplies. Will ask her about standing up to change bag and about hole being cut too large. I think I will pre-cut the holes in advance. It takes husband and I an hr to change bag.

Will let everyone know how it goes tonight when I sleep with head elevated. I sure hope that solves problem and I can get a good nights rest.

moreglorydays
Regular Member


Date Joined Feb 2009
Total Posts : 38
   Posted 3/9/2009 6:16 PM (GMT -6)   
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?
scheduled for permanent ileostomy surgery 2/19 proctocolectomy with permanent ileostomy 2/19
tried asacol, rowasa, remicade, humira
currently on 40 mgs.10 mgs. prednisone, 20mgs and tapering every ten days
51 years young


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 3/9/2009 7:30 PM (GMT -6)   
you can use glad press and seal to wrap around you in the shower.

once you get used to it, it will be a breeze! takes me about 10 minutes tops, to change my bag now, and it only takes that long cause i am so OCD about it, lol.

Don't precut your holes right now, because your stoma is changing size daily. that will stop in a few weeks.

dilatante
Regular Member


Date Joined Jan 2009
Total Posts : 125
   Posted 3/9/2009 9:19 PM (GMT -6)   
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.

dilatante
Regular Member


Date Joined Jan 2009
Total Posts : 125
   Posted 3/9/2009 9:21 PM (GMT -6)   
I forgot to mention, I shower every day with my appliance on. I take my belt off, and dry the appliance off when I step out of the shower. The HY tape helps to keep things intact, and I don't put anything else over it.

Pibbin
Regular Member


Date Joined Apr 2008
Total Posts : 163
   Posted 3/9/2009 9:36 PM (GMT -6)   
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.
Dx Mild Proctitis 7/06 at age 33, Dx Severe Pan Colitis 5/07, Dx Crohn's Colitis 10/07
Failed Asacol, Lialda, 6-MP, Canasa, Rowasa, Proctofoam, Entocort, Remicade, Humira
10/10/08 colon removed, temporary ileostomy
11/10/08 FINALLY off prednisone after 18 months
2nd of 3 surgeries planned for '09 to form j-pouch


yellowfin43
Regular Member


Date Joined Aug 2008
Total Posts : 305
   Posted 3/10/2009 10:14 AM (GMT -6)   
Make sure the wipes you are using arent the kind used to "remove" adhesive. Those are very oily and would prevent the next wafer from adhering. Ive never heard of using bee's wax either. I would think that might prevent adhesion also. I just shower and clean the area well, dry off then use a blowdryer to dry the area well. spray some stoma adhesive around my stoma and let it dry well. then put stoma paste around the wafer cutout and apply the wafer. I know we're all different but that has worked well for me for 20 years. Good luck.
Crohns 30 years. Ileostomy for 15 years. Symptom free for 14 years until 6 months ago. Now on Remicade and iron. Feeling like a champ!
God Bless. Tony


Glad Bag
Veteran Member


Date Joined Mar 2007
Total Posts : 699
   Posted 3/10/2009 12:45 PM (GMT -6)   
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...
"I am he as you are he as you are me and we are all together!" - The Beatles

doesn't that just sound cool when you sing it?


tkctwbd
Regular Member


Date Joined Dec 2007
Total Posts : 82
   Posted 3/10/2009 12:49 PM (GMT -6)   
Great News! I made it through the night without a leak! I used a wedge pillow to elevate my head; therefore, I do believe my leak was due to lying down flat on bed.

How pleasant to wake up in night, without the leak, and empty bladder and bag, and return to sleep.

I slept so restful that I think I have not been able to relax in months! The UC was more painful than the surgery, and so now that I no longer have UC, I can really rest.

I'm not sure who will help me find the right bag and right equipment (paste, etc). Who will help me, because I have no idea about bags and all this. I hear there are hundreds of bags.

HH nurse comes late afternoon. I sure hope she doesn't want to take bag off after what I've been through. Oh rec'd supplies in mail from Hollister. That was nice of them
Sarah

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 3/10/2009 12:54 PM (GMT -6)   
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?

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 3/10/2009 7:16 PM (GMT -6)   
Yay for you! Glad you were able to sleep:)

I'd suggest seeing an ET Nurse, too...HH nurses just don't have the experience to fit you properly.
New Topic Post Reply Printable Version
Forum Information
Currently it is Thursday, October 19, 2017 4:09 PM (GMT -6)
There are a total of 2,884,382 posts in 316,483 threads.
View Active Threads


Who's Online
This forum has 157608 registered members. Please welcome our newest member, nycusc.
440 Guest(s), 11 Registered Member(s) are currently online.  Details
PeteZa, notsosicklygirl, 81GyGuy, fragilant, bebrabrown, Turboz, Serenity Now, The Dude Abides, enginerd, SueCAll, pitmom


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2017 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer