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ohcountrybear
Regular Member


Date Joined Mar 2009
Total Posts : 192
   Posted 3/20/2009 5:58 PM (GMT -6)   
Wow, I want to commend everyone that lives this life. I feel so lost....I feel like I have no support. My wound clinic only has hours thurs and fri so in between that time if I have problems they tell me to call my surgeon who then tells me to go to the er. I got my ileostomy on march 3rd. I am using hollister two piece systems. They are leaking daily and Im having to change the wafer. I dont understand what I am doing wrong, even the ones the nurse put on me thur at the clinic came off just while I was watching the news that afternoon. I am using dial soap that they told me was best. I am using the paste and the barrier wipes. Today when it leaked the skin was broken down, I called the clinic was closed called my surgeon's office was told to go to the ER. I asked what the ER was going to do and if it was something I could do. After making a fus they said they would have the nurse call me. She did call me told me not to worry about the skin breakdown right now and to try a belt to keep the wafer on. Does anyone have any advice. Anything is welcome. I am 34 years and I feel like my independance is being taken from me.

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 3/20/2009 7:12 PM (GMT -6)   

You are not alone. You have us now! :-)

I think the barrier wipe night be your problem. Every time I tried to use one, my wafer would not stick.

I recommend putting a thin strip of paste around the hole in the wafer and applying the wafer to bare skin. Press your hands down on the wafer for about a minute and smooth out any wrinkles. The warmth from your hands should make the wafer stick to your skin.

I hope this helps!


Cecilia
Dx'd Crohn's in '99 at 28. Proctocolectomy and ileostomy in '06.
Disease-free, medicine-free, and very thankful to be healthy again.


ohcountrybear
Regular Member


Date Joined Mar 2009
Total Posts : 192
   Posted 3/20/2009 8:17 PM (GMT -6)   
My home nurse started me usuing the barrier wipes..... Is it better without it. Also, doesnt the barrier wipes help the skin break down

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 3/20/2009 9:32 PM (GMT -6)   
I agree that the barrier wipes are also probably your problem. I discovered that with bags its best to use as few things as possible.
Its also possible that you are cutting the hole the wrong size, because the stoma changes size as much as every few days at first.

Why dont you post exaclty step for step what you are doing, and let us see if we can find where it's going wrong.
It's normal to have a few leaks at first, but you shouldnt be having them everyday.
And like CeCe, you aren't alone anymore! everyone here is always happy to help as much as we can, these guys were great for me at first!

nene205
Regular Member


Date Joined Jun 2007
Total Posts : 302
   Posted 3/20/2009 10:22 PM (GMT -6)   
I have a different opinion about the barrier wipes. I like them because I am convinced that that film protects my skin. First I always take a shower with naked stoma and use Dial soap. Idry the area really well when I get out. Put the barrier wipe on all around the stoma and where the tape will be. Then I put an Eaken Seal on (donut shape). I use the whole seal. Then I place the waferover the Eaken seal. I do use ConveTec moldable wafers. Then hold the whole thing down for at least 30 sec. I have even used the blow dryer (low) to make sure it's sticking.

Most of the time when I have a problem with leaks it is because of eating too much thickening foods like peanut butter, potatoes, or nuts.

You will find the best method for you with trial and error. But you are not alone. Everyone on this board cares. Good Luck.

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 3/21/2009 7:29 AM (GMT -6)   

I think it depends on the wafer you're using when it comes to having a problem with the skin barrier wipes or not. The wafer I use has a built in skin barrier, so I don't need the wipes. I tried using the wipes before I knew the skin barrier was built in, and the wafer peeled off every time.

Countrybear, I use the Coloplast Assura Extended Wear Wafer (item #2833) with matching pouch (item #13986) and get 7 days wear time with no leaks. You might want to consider switching to another product to see if you get better results.

Also, I use an adhesive remover wipe to remove the wafer, so it doesn't pull my skin. It makes the wafer slide right off.


Cecilia
Dx'd Crohn's in '99 at 28. Proctocolectomy and ileostomy in '06.
Disease-free, medicine-free, and very thankful to be healthy again.


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 3/21/2009 9:49 AM (GMT -6)   
the only other thing I might add is to check out the convex wafers or convex inserts. What they do is push in on the abdomen and allow the stoma to protrude a bit more so as not to allow food to get trapped behind the wafer opening when you are having thicker output. I started using them a few years ago and have had great success. Again, convexity is usually only used when the stoma doesn't protrude quite enough to all the thicker output to flow into the bag, rather than getting stuck right at the wafer opening.

Please feel free to ask any and all questions... we are here for you!!!
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


ohcountrybear
Regular Member


Date Joined Mar 2009
Total Posts : 192
   Posted 3/21/2009 8:35 PM (GMT -6)   
First I want to thank everyone..... its nice to know there is some one to talk to. I have done several different things and have put this thing on different ways taking peoples advice. I know on thursday I had gone to the wound clinic and the ET nurse put on my bag and it was off by 6 that night. Now again around noon today it came off today. Ok so I will tell you how I was taught of puting it on. First let me say my stoma is not round it is oval I guess because it is a loop? Sometimes I shower sometimes I havent but I dry completely if I do. I have a pattern that still seems to fit my stoma that they made on thursday for me. So I would use the barrieir wipes and let it dry then add the paste around the stoma, then put on the wafer.....holding in on for a bit. then add my bag. Now, today I got desperate and went to a local medical supply store to try a convex one but all they had was the precut and they are all round so no matter which one we tried there was too much of a gap. When I got home I had some samples from secur-it ..... they gave me two so I am trying one and keeping my fingers crossed. My skin is sooooo irritated it burnt just running water over it today.

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 3/21/2009 10:31 PM (GMT -6)   
Its ok that it is an oval, if you cut it round the stoma will move out into the round shape. I cut mine like a teeny tiny bit too small, and i do mean a teeny tiny bit. This is what i do, and i get about 4-5 days wear and could wear it longer, i just dont want to.

I have all my stuff ready, precut and all, i have had mine for a while, so i dont have to measure and i can do it without the guide, but since yours is new i would measure with every change.
i take a shower
I put the paste around the wafer, right next to the opening, not much, use about how much toothpaste you would use and do that all the way around (hope that made sense)
Then i remove the bag, dry the area around it, very very well.\
I lay down and put the wafer on, then hold my hands over it pressing down and rubbign my fingers around the wafer part for a few minutes.
I put the bag on then snap it over and over (a bit OCD, lol) until i am sure it is right.
Then i take the hair dryer and heat the wafer. Then run my hands aroudn it aagain, pressing down.
Then that's it.
I dont use wipes, i dont use adhesive remover, i just clean the area with water. No soap around it.


Are you putting the paste on your skin?

ohcountrybear
Regular Member


Date Joined Mar 2009
Total Posts : 192
   Posted 3/22/2009 6:12 AM (GMT -6)   
yes, I have been putting the paste on my skin. That was the only way I was showed. I will say that they forgot to take the rods out of the stoma before I left the hospital and I didnt know any better so the last time I saw my doctor i said something about that rod moving alot and he said, that should have been removed at the hospital it shouldnt have been there and to have my home nurse take it out. Well, then my nurse said she had never done that and wasnt comfortable so I had to wait a week longer to get into the would clinic to have it removed. That has been just this past thursday. So I have to put a little bit of this powder stuff but I try really hard to only put it in the wholes but then they said put paste over it as well. I do find it hard for me to see and have tried in front of mirror. This last time I had my husband try...... so far so good....in about 3 hours it will be 24 hours....lol. We will see if it last.

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 3/22/2009 7:16 AM (GMT -6)   

ohcountrybear--sorry you are having such difficulties, but you've found a great place to vent and get suggestions!!  Welcome tongue

I was taught to put the paste on the wafer, let it set a minute, then apply.  I now swear by the Eakin Seal (the donut previously mentioned)...shape, apply to wafer and apply!

I would also suggest trying a wafer with convexity...that can usually solve problems when you are getting so many leaks!  There is "light" and "regular" types so you may have to try both.  You may also want to try a Convatex Mouldable Wafter...you can actually shape the opening to your needs, apply, and it will "turtleneck" to you stoma, so it is always the right size.  Try going to www.UOAA.com, they have links to all the manufacturers and you can get some really great information from those sites.

Next, are you near a teaching hospital?  even if you have to drive an hour, it might be worth it...it sounds like your wound care center isn't very knowledgeable in stoma care and you might get some more help getting things straightened out if you could see a Stoma Nurse at a larger facility.

Let us know how things progress!

Post Edited (OHIO76) : 3/22/2009 7:19:44 AM (GMT-6)


ohcountrybear
Regular Member


Date Joined Mar 2009
Total Posts : 192
   Posted 3/22/2009 9:00 AM (GMT -6)   
I have thought of looking for a different wound care center. Especially since mine is only available to me for a day and a half. I do want to try the convatec wafers as well.... so far so good with this one. Its almost 24 hours and its still on so we will see. I also am recieving the coloplast samples in as well to try. I actually feel great. I dont hurt, Im not taking any pain meds. Now, I did opt to go back to work tomorrow which now Im really scared to do but I was getting soooooo depressed I need away. So Im going back part time. Its funny but Im an LPN, but I have only worked doctors offices and we dont deal with ostomies. I have patients with them but we dont do anything with them and what I learned in school was six years ago. But anyways my doctors and co workers are awesome and very supporting. Thanks to anyone with advice to make this transition a bit smother.

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 3/22/2009 12:11 PM (GMT -6)   
i think putting the paste on the wafer itself will make a big diff.
my husband is a RN and he knew very little about them either.

ohcountrybear
Regular Member


Date Joined Mar 2009
Total Posts : 192
   Posted 3/22/2009 12:31 PM (GMT -6)   
Well, I spoke too soon and sure enough it came loose. Because I have had to change the wafers so much I only have one left. So I called the ER floor supervisor crying my eyes out. I told her I was putting my last one on and had nothing to rely on. My husband and I noticed when I stand up my stoma goes almost flesh with my skin. If I lie down it is about 1/4 inch abouve my skin. So she calmed me down and asked if I could come in and I said yes I was about 9 miles from there. So she took me over to the would clinic and went through the cabinets and found a couple convex to give me until I can talk with them tomorrow. So now this next one I am going to cut a tiny bit snug and put the paste on the wafer and see how that goes.

marymagdalen
New Member


Date Joined Mar 2009
Total Posts : 18
   Posted 3/22/2009 6:57 PM (GMT -6)   
Hi, I am new to this web site. I am going to have a proctocolectomy (removal of entire colon and entire rectum) on March 30th. I have had irritable bowel syndrom for 30 years ( I'm 47) and severe chronic constipaton for 17 years. Things are so bad now that I can't even expell diarrhea. My doctor wants to do a J pouch. I am going to have a bag for the first 3 months after surgery. I'm wondering if I should tell him to forget the J pouch and make the bag permanent. The reason is because, even though my anal monamatry showed that my anus is working, I think it's not working. Twice over the last year, when I went to bed with diarrhea in me, I woke up and it was all over the bed. I have also heard that the J pouches don't work well for people who get them because of colonic inertia (chronic constipation) because our pelvic floors are so weak. I'm going to talk to my doctor in 4 days for the last time before surgery. Have any of you had to have this surgery for the same reason as me? Also, how long did it take you to adjust to having a bag? Is it terribe? Would you suggest I try the J pouch? Also, I can't clean out for this surgery and my doctor says don't worry about it. But I am. Thanks for your input.

ohcountrybear
Regular Member


Date Joined Mar 2009
Total Posts : 192
   Posted 3/23/2009 4:18 PM (GMT -6)   
Ugh........ So the wound clinic saw me today as an emergency appt. and they put a moldable convex on me. That was at 3pm and by 530 it was already off. I just dont understand. Im cant do this anymore. I am soooo sore and nothing is going to work on me. Im so down and feel soooo lost.

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 3/23/2009 7:51 PM (GMT -6)   
something will work for you!
it is just gonna take you some extra time to get it right.
what brands have you tried so far?

peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 3/23/2009 10:46 PM (GMT -6)   
ohcountrybear said...
Ugh........ So the wound clinic saw me today as an emergency appt. and they put a moldable convex on me. That was at 3pm and by 530 it was already off. I just dont understand. Im cant do this anymore. I am soooo sore and nothing is going to work on me. Im so down and feel soooo lost.
Might I suggest a couple of things?  What do you wash/dry the skin area around the stoma with?  Wash cloths, 4x4's, etc?   I use Viva soft/absorbant paper towels.  There is no possibility of residue from laundry soap or softener in them.  I also use an adhesive remover pad around the stoma on the skin before I wash w/ soap and water, to remove an residue or build up from the previous wafer.
 
    1. remove wafer
    2.  use adhesive remover wipe, then just use a folded piece of TP to wipe that off
    3.  use one papertowel folded 4 times, like a washcloth, with warm water and soap
    4.  use second paper towel to wipe off the soap, rinse the skin well.
    5.  use last paper towel to blot the area dry
    6. use a portion of EAkin Seal, like you would use the stomahesive paste, just a little around the hole opening of the wafer
  **7.  apply wafer, make sure the skin is pulled tight, like away from the stoma (I can try to explain this better if you don't understand) --- well stand up really straight and be sure there are no wrinkles under the area where you are placing the wafer,  pressing all around it for about a minute to make sure it adheres, even right around the stoma.  some use a blow dryer on a warm setting too.
    8. snap on bag.
 
Please let me know if I can help you to resolve this.  Did you try a convex wafer?  I didn't have any luck with the moldable ones that end up "turtlenecking" around the stoma.
 
I will check back in the morning.
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


ohcountrybear
Regular Member


Date Joined Mar 2009
Total Posts : 192
   Posted 3/24/2009 8:45 AM (GMT -6)   
ok.... so by this morning I had gone through all three moldable convex they had given me. So I had to go back in. I havent been using any soap lately, before that I was using dial.... I have done paper towels 4x4's wash cloths. Finally I got them to see that there is a big difference in my stoma when Im sitting to when I am standing. I have dips on the side where the rods were. so they took something like the eakin seal and tore it apart and put it just where the dips were and put a different convex on. Its a holister brand. Im trying to keep myself calm but three in one night is a bit much. I do appreciate all the responses I get on here. I actually try each and every one. I havent gotten the eakin see yet but they gave me samples today of what they say is the same thing.... they just want me to use pieces of it where the dips are.

peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 3/24/2009 9:32 AM (GMT -6)   
I think their suggestions are a great idea... I didn't realize you had "dips". Makes sense what they are recommending. Please let us know if we can help. You are trying all the right things. You WILL find that combination you need and will be successful.
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


ohcountrybear
Regular Member


Date Joined Mar 2009
Total Posts : 192
   Posted 3/24/2009 4:05 PM (GMT -6)   
whoo hoo I am eight hours later and the same bag is still on......lol. I still find myself babying my every move....like sitting really easily and bending easily but so far so good. My fingers are crossed. Thanks
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