need advice: skin breakdown and bags last only thirty minutes

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tkctwbd
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Date Joined Dec 2007
Total Posts : 82
   Posted 3/29/2009 12:07 PM (GMT -7)   
Surgery Mar 2. I have ileostomy

I saw ostomy nurse on Friday because I was having trouble with leakage after six hrs with new bag. Nurse put on new bag with seal and said I probably would not be able to keep bag on more that two hrs. because of skin breakdown Well, she was wrong. I can't keep bag on for more than thirty minutes before it leaks.

I have not used bag since six o'clock this morning because it seems senseless. I have inflammed skin (half moon) below my stoma. I keep washing area as stoma pumps out its liquid. I will not eat, but I did drink V8 this morning and stoma is still pumping that out after five hrs. I can tell because it is red. I sip on water occasionally. I plan to go see my family MD tomorrow altho I don't know what she can do. But I'm deteriorating the way I am. I will also call the ostomy nurse altho I'm not sure what she can do either.

Has anyone in the world been through a similar experience? What can the medical staff do? Anyone with advice, suggestions? I will be up all night I'm afraid, altho husband plans to put a bag on a bedtime in hopes that it will hold for me to get sleep. Pray, please.

sammies
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Date Joined Feb 2008
Total Posts : 493
   Posted 3/29/2009 12:38 PM (GMT -7)   
HAve you tried putting stoma powder on the "rash?" I cut the tape around the wafer to accomadate the rash in places and put the powder and a piece of gauze over it--that's under the appliance from a leak. Had a leak on top at 2:30am this morning and had to change the bag myself for the first time! Poo had slid under the wafer--I caught it just in time but did develop more rash/skin irritation above the appliance. I rinsed with saline, dried, applied stoma powder and stuck the appliance back on there.

Can you try another appliance that has less sticking area--ie. the holister ovals seem to have less than the squares.

Keep us updated and good luck!
24+ years with Crohn's/colitis; fistulizing crohn's; ileostomy and proctocolectomy; propranolol and xanax; been on a ton of crohn's meds; praying to get through each day.


tkctwbd
Regular Member


Date Joined Dec 2007
Total Posts : 82
   Posted 3/29/2009 12:47 PM (GMT -7)   
I use stoma powder and blot it with sealing pad. The inflammed area keeps growing. I can only use one piece bag because my tummy is flat, my stoma is small, and my stoma is flush with skin. Nurses having hard time fitting. They tried paste and barrier riing. Nothing is holding.

Can you reuse a bag once it leaks?

I'll ask Hollister about the ovals that use less skin.
Thanks

tkctwbd
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Date Joined Dec 2007
Total Posts : 82
   Posted 3/29/2009 1:16 PM (GMT -7)   
Does anyone know if I can put on stoma powder without putting on bag?

Equestrian Mom
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Date Joined Mar 2008
Total Posts : 3115
   Posted 3/29/2009 2:06 PM (GMT -7)   

wow, you are having a difficult time...my first question is:  are the nurses using an appliance with convexity?  I know I said it on another post, but if your stoma is FLUSH with your skin, the appliance needs to PULL IT AWAY from your body...if that is not accomplished, you will continue to have leaks no matter what products they put on you!!!  I've been there and I know the pain you are in cry

As far as using a one piece because your tummy is flat and stoma small/flush to skin...that's a crock!!!  I use a two piece and many of us do with varied shapes/sizes and types of tummies.  It sounds like the ET nurses are not quite on their game!!! 

If I was in your place and living with out an appliance on, I would go as quickly as I could to the hospital.  You should not be suffering this way.  If I remember right, you live in the country, but that shouldn't stop you from getting immediate relief.  If that isn't possible, call your home health nurse and get an emergency visit to your home.

Another note, there are other products that can protect your skin when it's broken down...make sure they are taking all that into consideration and not just plopping another appliance on.  PLEASE let us know how things are going....


CLynn2u
New Member


Date Joined Mar 2009
Total Posts : 3
   Posted 3/29/2009 3:28 PM (GMT -7)   
My husband had the same problem. It was a nightmare. I finally figured it out and what things to use. I actually showed the ostomy nurses how to apply as I do to make them work more then 1/2 day or so....... Now I can make it stay 6 days.

Lynn

ohcountrybear
Regular Member


Date Joined Mar 2009
Total Posts : 192
   Posted 3/29/2009 4:47 PM (GMT -7)   
As most know here I just went through all that......convex helped get me to 12hours but then the eakin seal has gotten me to 3 days. But I wanted to say that my ET nurse because my skin was so bad put the powder on and brush of the excess waited a bit and did it again waited awhile did it again like four times and then put my appliance on and the next time I took it off my skin was 75% better. Hope this helps.

tkctwbd
Regular Member


Date Joined Dec 2007
Total Posts : 82
   Posted 3/29/2009 4:47 PM (GMT -7)   
Thanks everybody. I appreciate your genuine concern. I am scared because I think I am the only one; and that it will always be this way. I am discouraged as you can tell. But I look at others and think how thankful I am.

Yes, I was told convexity at first, but the belt hurts my back. Ohio, I am not sure what needs to be PULLED away from body?
"...but if your stoma is FLUSH with your skin, the appliance needs to PULL IT AWAY from your body.."

Now because of breakdown, nurse says nothing will hold, so I go to doctor.

And Lynn, what did your husband do for skin breakdown? Was he able to wear appliance with skin breakdown?

My husband just put a new bag on. So far, so good. If I feel the stinging, I will know the leak is coming.
Thanks

tkctwbd
Regular Member


Date Joined Dec 2007
Total Posts : 82
   Posted 3/29/2009 4:50 PM (GMT -7)   
Thanks, OhCountryBear! I will not give up.

thanks

CLynn2u
New Member


Date Joined Mar 2009
Total Posts : 3
   Posted 3/29/2009 4:57 PM (GMT -7)   
Yes he can now............ what we learned is the skin returns to normal if your not putting on and taking off daily.

If you need pointers plz just ask..........

Lynn

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 3/29/2009 4:57 PM (GMT -7)   
Why do you need a belt with convexity?  I would think that it is more important not to have the leaks than worry about wearing a belt...I've only worn a belt when I couldn't get one side of the wafer completely applied because of my staples...I don't know why nurses say you HAVE to have a belt for convexity...it's not true!!
 
The convexity "pulls" your stoma out/up so that the output can flow into the pouch and not between the appliance and your skin...I hope that clears that up...
 
Have you tried an Eakin Seal?  Like ohcountrybear said, it helps tremendously with wear time and it is a miracle worker at healing skin...well worth trying:)
 
I am glad your hubby was able to get an appliance on for the night...I'll keep my fingers crossed it works for a while!!!!

ohcountrybear
Regular Member


Date Joined Mar 2009
Total Posts : 192
   Posted 3/29/2009 5:00 PM (GMT -7)   
The nurses told me that I had to wear my belt with my convexity and when I saw my surgeon on friday.....he said that was non-sense and since it was rolling up it was doing more harm then good.

dilatante
Regular Member


Date Joined Jan 2009
Total Posts : 125
   Posted 3/29/2009 7:06 PM (GMT -7)   
"Yes, I was told convexity at first, but the belt hurts my back. Ohio, I am not sure what needs to be PULLED away from body?
"...but if your stoma is FLUSH with your skin, the appliance needs to PULL IT AWAY from your body.." "
 
The convexity will help pull the stoma out from your body. The belt will help to apply pressure to the appliance and help hold it on, is my understanding. Yes, they tend to roll. I just keep straightening mine out. I wear a belt with a convex appliance all the time. The first thing you've got to do, is get the skin breakdown under control. The stoma nurse, IMHO as a nurse, shouldn't have sent you away until you had something that was sticking. It may be the weekend, but that doesn't mean that they can't do something about the leaks!! I got to be on a first name basis with my cwocn nurse. I had known her before I got my ileostomy, and now we're even better friends. Until you have skin, you will have problems with leaks. Someone mentioned applying powder, with the skin protectant in layers, that will help also. Eakins rings will help also. A minimal amount of paste and anything else is important under the appliance. Any time it leaks, change it!! I am NOT an expert, there are people with a lot more experience on here, than me. I just  know what worked for me. Good luck!!

peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 3/29/2009 10:38 PM (GMT -7)   

Please try the convex wafer.  I am also a believer in Eakin Seals.  I get 7 days wear time. 

Here is my explanation of convexity.  If you look at your stomach/stoma without your appliance on (which you have seen more than you want to lately, right?), and just apply gentle pressure to the skin just around the stoma - you will notice that the stoma actually protrudes a little more, right?  Well, the convex wafer, once applied to the skin like a normal wafer, consistently applies this slight pressure to the area around the stoma making it protrude a bit.  This allows the output a better chance to flow directly into the bag rather than pushing it's way behind the wafer before making it through the wafer opening and into the bag.   Does that make any sense? 

I have never used an ostomy belt, I have always worn a 2 piece appliance.  I switched to convex wafer a few years back with great success.  And the EAkin seal.  Did I meantion that I am a real fan of the Eakin Seal. 

Please let us know if we can be of any other help.  I think we can get you "fixed up", using a bit of stomahesive powder to help stop the weeping skin before applying the new wafer, adding some of the Eakin Seal to the perimeter of stoma opening that is cut in the wafer, and using a Convex Wafer.  The longer you can keep the output off the skin --- it is amazing how quickly that skin can heal.  The trick is to get the bag to stay on.  You will find that combination with some good suggestions.  Keep your chin up.  We will help you thru it. 

 


Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


tkctwbd
Regular Member


Date Joined Dec 2007
Total Posts : 82
   Posted 3/30/2009 9:40 AM (GMT -7)   
Thank you, Peggy. If i ever go seven days, I will be in high heaven. That would be like a million dollars. I never thought I would say that. Guess everything is relative to situation.

Husb put on new bag last night at 7pm. It is now Mon at noon. It has held! He used a flat bag (not convexity) and paste. We are new to Eakin seal and I didn't feel comfortable using it. However, I am ordering some this afternoon from Edgepark.

Boy, did I eat this morning: 3 softboil eggs, V8 juice, several Club wheat crackers, bite of cheddar cheese, my vitamins/supplements, and 3 precooked bacon, then a can of Ensure. I feel so much better. I got ten hrs sleep, and was awakened by call from ostomy nurse.

I told her what I read online last night. Ostomy nurse wants me to keep on flat bag (not convexity) until my skin is better, then go to convexity. She wants me to continue with powder and blot powder with sealant called a protective barrier wipe.

Your notes are so encouraging. I am glad to know the skin heals well and fast. It tears my husb up to see the inflamed skin. It hurts him more than me.

Peggy thanks for description of how convexity works. I am like that: I want to know why I'm suppose to do something and how something works. I go into details, I guess

Question: can the wafer everyone refers to also be a one piece appliance? I know there is a wafer on the two piece.
I read before operation that many people liked the two piece. Why is that? I would like to try two piece because of posters comments, but why do people like them over one piece. Also, are they cheaper?

I have serveral brands of the flat one piece bags. Right now I have on a colorplast.
I have had to empty bag 2 times since writing this note. Oh, so nice to be able to eat! My husb is happy, and so am I

I will update when I need new bag. I want to see how my skin is doing. Does not hurt with appliance until there is leakage.
Thanks to everyone for help and optimism. It helps alot.
Sarah

Wade457
Regular Member


Date Joined Dec 2008
Total Posts : 91
   Posted 3/30/2009 3:58 PM (GMT -7)   
Try the spray adhesive along with the green wipes. Works like epoxy and I manage to keep a bag on for 5 days with it..

Betty Poop
New Member


Date Joined Feb 2009
Total Posts : 12
   Posted 3/30/2009 4:32 PM (GMT -7)   
Hi,
 
Have you ever attended any local meetings for the Ostomy Association? Quite often there will be a variety of different products to share. You may be able to try different things to see if they work for you without having to order boxes of supplies that end up unused. Some others at the meeting may also have advice to share. You can start by visiting their website...
 
 
Best of luck to you...
Cancer Diagnosis  Jan 2001
Hysterectomy turned into colostomy on left side.
 
Feb 2002 
Takedown surgery turned into reconnecting to rectal stump but ended up with a temporary ostomy on right side.
 
Radiation therapy has caused too much scarring of the rectal area to allow for normal BM's. So temporary ostomy has become perm.


Fribster
New Member


Date Joined May 2008
Total Posts : 14
   Posted 3/30/2009 6:04 PM (GMT -7)   
If you get desparate again, our ostomy nurse told us to only seal the part closest to the stoma and let the other part rest with nothing stuck to it - of course that means laying down for a day or so til the skin gets better.

Regarding Betty's post - we live in a small town and don't even have an ostomy nurse let alone a meeting to go to. So frustrating when we got out of the hospital - eeks - thank God for Aetna's phone nurses. They were better than the ER with suggestions of help.

I don't know if this is any help to you sound like you got what you needed. Thanks for listening

tkctwbd
Regular Member


Date Joined Dec 2007
Total Posts : 82
   Posted 3/30/2009 6:14 PM (GMT -7)   
Thanks Wade. I will.

It's been 26 hrs!

Wade457
Regular Member


Date Joined Dec 2008
Total Posts : 91
   Posted 4/1/2009 5:59 AM (GMT -7)   
tkctwbd said...
Thanks Wade. I will.

It's been 26 hrs!


It's now Wednesday morning about 9am my time. Put this last bag on Monday when I got up about 6:30am. This is day three and (crosses my fingers) should be good until Friday morning.

I notice on day 5 that it gets a little 'iffy', and instead of taking a chance with springing a leak during the day, when the stoma is pretty active. I'll just proactively change the bag in the morning when I get up,

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 4/1/2009 6:54 AM (GMT -7)   
has it been 62 hours?!

tkctwbd
Regular Member


Date Joined Dec 2007
Total Posts : 82
   Posted 4/1/2009 11:47 AM (GMT -7)   
I went just over 48 hrs. about 11pm last nite. Husb put on new bag: coloplast with paste at midnight. Lasted two hrs. I stayed awake, cleaning area until 7am today when husband put on a new bag: convaTec with elkin ring. It is now 2:30pm Wed. : no evidence of leakage. The skin has improved tremendously. Husb could not believe how much better my skin looked. Only the area around stoma is now inflamed, except two sm dots under wafer area. During the night when I did not have on bag, I was able to keep skin dry and even put the stoma powder on the inflamed area, but did not put on the barrier wipes at that time.

I am feeling depressed again. Been battling this for three months. I also have trouble falling to sleep at night. Could be depression or because I can only sleep on back. I'm running low grade fever in late afternoon thru evening (take Tylenol with results). I ran low grade fever with UC. And today, the discharge from rectum (I'm hoping to get j pouch) increased. This is on my mind for several reasons. The surgeon said I had unusual set up (I think he meant very short rectum) and it took him an extra hr or so in surgery to do the j pouch. Also, on the third day after surgery, a pint of pink liquid came out of my rectum. Med staff said they thought there might have been a pocket that was holding the liquid. Since released from hosp I have had what I think is normal discharge from rectum, but today I released about a heaping tablespoon of light brown material. Usually I discharge a creamy material.

I may go to my family MD for anti depressant. Something that will help me sleep. I lay in bed at night for four hrs and finally fall sleep.

I guess I need to order a box of convexity bags. Think I will call ostomy nurse and ask her. So depressed but doing what needs to be done.

Will report again later. thanks for help and concern

jblue65
Regular Member


Date Joined Jan 2008
Total Posts : 381
   Posted 4/1/2009 12:06 PM (GMT -7)   
tkct-
It seems you are getting some relief in terms of the bag... However, as someone who also suffers from depression/anxiety-- get help now. WHat we go through with this disease and then the surgeries, it is completely understandable to have issues with depression/anxiety.

I am now taking Xanax and I take Lexapro and feel better, because the first two weeks after my surgery I was having anxiety.

You are so fortunate to have such a wonderful husband who is helping you with this.
Jackie, 43
Pancolitis, DX October 06

Lexapro, Synthroid, Protonix,
Tapering prednisone from 40 mg


Surgery March 13th- Total Colectomy
Jpouch surgery to be done in 3 steps


tkctwbd
Regular Member


Date Joined Dec 2007
Total Posts : 82
   Posted 4/1/2009 5:16 PM (GMT -7)   
Thank you, JBlue
He is very good to me.

Bag that we put on at at 7am today started leaking at 6:30 pm. Put on new bag at 8pm. My skin looked a little more inflamed. Plan to sleep with head elevated as I am not wearing a convexity bag.

This is so trying. I wonder if it will ever end

tkctwbd
Regular Member


Date Joined Dec 2007
Total Posts : 82
   Posted 4/1/2009 5:18 PM (GMT -7)   
It's already stinging. I hope it does not leak.
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