Ostomy on a small child - extremely irritated any suggestions

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katiesmommy1
Regular Member


Date Joined Aug 2009
Total Posts : 94
   Posted 1/20/2010 2:06 PM (GMT -6)   
Hello,
I have a 3 year old with an ileosotmy. I've been having a lot of trouble getting the wafer to stick on her skin for more than a day. Her skin is extremely irritated and has been that way for more than a month now. It wasn't so bad until I tried using an adult Hollister wafer and didn't realize it was leaking under the outside tape until it was too late. I think the stool was sitting on her skin for at least a day and when I took the wafer off it was so red and irritated. That was almost two weeks ago. Since then I went back to the original pediatric wafer but it still hasn't healed. I tried the medicated powder b/c they originally thought it could be a yeast infection, but that never healed it either.
Now all I've been using is the regular stoma powder, and the no sting barrier pads, then I put the pediatric wafer on. sometimes it falls off within a few hours, sometimes it lasts till the next day.

Are there any other parents that have gone through this with their child and can offer any suggestions.
I'm trying to get a WOC nurse to visit my house but I haven't had any luck.

thank you in advance,
Francine

Equestrian Mom
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Date Joined Mar 2008
Total Posts : 3115
   Posted 1/20/2010 2:26 PM (GMT -6)   
Francine~I am so sorry to hear you are having problems keeping your daughter's pouch on!

When you use the "no sting" preps around the tape part of the wafer, and the wafer gets wet, it will usually unstick (for lack of a better word)...

Here are a few questions:

1.What type of soap are you using?
2.Do you measure her size each time? When a stoma is new is can change a lot and if there is too much room it can leak.
3.Can you describe her stoma? does it stick out or does she have any skin folds? Are you using a convex wafer?

Hang in there...these are all issues most new ostomy patients deal with...you are not alone and we'll help the best we can!

katiesmommy1
Regular Member


Date Joined Aug 2009
Total Posts : 94
   Posted 1/20/2010 2:54 PM (GMT -6)   
I just recently started using Ivory bar soap b/c that is what the WOC from Hollister told me to use. Before that, I only used warm water around her stoma and johnson's baby soap for the rest of her body. Johnson's baby soap is what the nurse at the hospital told me to use. There are no lotions or fragrances in it so I thought it was ok.

No we haven't been measuring it anymore since it seems to be a perfect fit each time. We've even tried using the barrier rings around the top of the wafer and on the bottom (on top of her skin). When we put the ring directly onto her skin we noticed it made it even more red and irritated in that spot, so we stopped doing that.
I don't see anywhere around the stoma it could be leaking. I swear it looks like a perfect each time.

Her stoma is average (so I've been told). It sticks out about an inch, no folds, nothing out of the ordinary. Just a regular stoma.


I tried not using the no sting barrier, but my dd's skin is so sensitive. When I pulled the wafer off without the no sting barrier she was in so much pain and it seemed to rip off skin. So I figured it was best to keep using it. maybe I should try a different no sting barrier (I'm using 3M right now). Could she be allergic to that?

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 1/20/2010 5:55 PM (GMT -6)   
i had to switch to the gold bar of dial soap, thats all that worked for me.
And the no sting pads def shorten the wear time.
She could be allergic to a certain kind i guess, you can always try another and see if that works.
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007! 
-I have gone to find myself, if i get back before i return, keep me here-


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 1/20/2010 8:51 PM (GMT -6)   
Francine~it's trial and error...have you tried another brand's pediatric appliances? It really sounds like she is have an allergic reaction/highly sensitive to the brand you are using. There really is a difference with each brand!

Have you tried cutting off the 'paper tape' that is around the wafer/flange part? I actually do that and then use a Sure Seal Ring over it (breathable waterproof plastic). Sometimes I had sensitivity issues with the paper part only. You could even just cut off the part of the paper/tape that goes over the irritated area!

It sounds like you are doing every thing else right...maybe someone will have another suggestion!

J's Mom
Regular Member


Date Joined Oct 2008
Total Posts : 109
   Posted 1/20/2010 9:21 PM (GMT -6)   
Francine,
I have a 21 year old handicapped child, very small for his age (83 lbs). He has had his ileostomy for about 18mos now. I too went through the frustrations you are experiencing. In fact, his wafer is off every morning, due to the amount of gas and output he has at night. Amazingly, most of the time his skin remains healthy. When I bath him I don't use soap directly around where his wafer goes. I just wash it very well with warm water. I found that the skin preps made his skin worse so I normally don't use any. Occasionally he will have some yeast problems and when that occurs I use Nystain powder and a no sting spray barrier. That usually clears it within 2 days. We use Eakin Seals, but due to the insurance only allowing 5 per month we cut them into 1/3 and mold around his stoma prior to applying the wafer. Ialso found that certain wafers seemed to cause him more irritation. We use a one peice Coloplast, nothing fancy, but we can get 30 per month which is necessary since he requires a new one everyday. Occasionally, I use a different brand from samples I have received and have noticed irritation.
As everyone said, everybody is different and I know I tried many different wafers and combinations before finally determining what worked best. Still not great to have to change daily, but at least his skin is healthy. See if you can get samples from other companies and see if one causes less irriation than the other. Several of the different ones I have had are "smaller" and might work for a small child. Good Luck!

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 1/21/2010 6:10 AM (GMT -6)   
J's mom~what if you used an extra large pouch at night (assuming you use a two piece appliance)? There might be enough room where the gas won't pop the wafer off...just a thought!

katiesmommy1
Regular Member


Date Joined Aug 2009
Total Posts : 94
   Posted 1/21/2010 7:28 AM (GMT -6)   
Thank you all
I am trying to get a WOC nurse in today or tomorrow. The skin is so bad that someone has to look at it. The only reason I don't want to change products is because Hollister is the only brand that has the "lock and roll". I'm dragging my feet on switching but I know that I may have to just try another brand. I have Convetec (sp?) samples but the woman only sent adult flanges..not pediatric and they seem huge. I am hoping the WOC nurse will bring some samples with her.

As for the gas and output my dd has the same issues every morning. but luckily for us, she is young and sleeps in our bed. I open her bag at least 2-3 times a night to let the gas out. Otherwise there were times she lied directly on top of it and popped it like a balloon because it was so full. Not sure how long she can last in our bed though since none of us are getting a good nights sleep.
thank you again for all the suggestions.
I am going to try something different the next time we change it.

J's Mom
Regular Member


Date Joined Oct 2008
Total Posts : 109
   Posted 1/21/2010 6:20 PM (GMT -6)   
Ohio76,
Currently we are using a one piece. My son is on a Ohio Medicaid Disability Waiver (we live in central ohio, I see you must be a fellow Buckeye). Unfortuantly, I have a hard time finding a vendor that works with waivers and when I do d/t the low reimbursement we don't get much choice in what we receive. I suppose I could put him back on my health insurance, but not too sure that is the best thing to do either. I may have to check into that option though.

Katiesmommy,
Let me know what the WOC nurse suggests.

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 1/22/2010 7:06 AM (GMT -6)   
J's mom~yes, I'm Buckeye by marriage!

One way to try would be to call/email the manufacturer(s) directly and get a bunch of samples. Just make sure you request that they send the really big pouches, too. I have found that is the best way to try something different before investing in a purchase or trying to get it approved. If it works, you could argue that they'd save money by letting you adjust the order!!

Francine~is Katie any better and were you able to get a WOCN in?

katiesmommy1
Regular Member


Date Joined Aug 2009
Total Posts : 94
   Posted 1/22/2010 8:02 AM (GMT -6)   
First I have to have a regular nurse come in and open a case file..then sometime next week the WOCN will visit me. This is the only way my insurance will cover it. I can find a WOCN out of network but I really don't feel like paying a bunch of money for someone to just look at my dd. Today a regular RN will come and help me change my dd's appliance..hopefully it stays on till she gets here.
I'm hoping when I take the appliance off today her skin is a little better. keeping my fingers crossed..

I will you posted. thank you again,

ducridr
Regular Member


Date Joined Apr 2008
Total Posts : 139
   Posted 1/22/2010 12:51 PM (GMT -6)   
Francine - I'm so sorry to hear of all the problems that you are having with Katie's appliance and skin. I hope that the nurse is/was able to help today. There is a lot of information on the jpouch.org forum about skin problems for people with ostomies and also on uoaa.org. One posting in particular on jpouch.org is for a person that had major skin issues (2nd degree burns under her wafer) and has listed many of the things that she tried and others suggested to fix her skin so that she could keep a wafer on and her skin could heal. Go to www.jpouch.org and go to jpouch forums. Search in the general discussion for "Need incision and ostomy help-yesterday!!" and you will find the message thread. There may be some information that you can use in it.

I do know that all the WOCN's that I've seen have recommended and as many people that have posted have said - less product is better. With both my end and now my loop ileo I use stoma powder if my skin is irritated, followed by the wafer with some adapt barrier (the ring not the cream) on the wafer around the hole and that is it. I did find out that due to my allergies I had to use an adhesive remover to get all the adhesive from the old flange off or my skin would turn red and weep. That may help to resolve the pain issue with pulling off the wafer vs using the no sting barrier. I would recommend that you get one of the ones w/o alcohol or it will sting on the open sores and clean well after you use it as they are oil. Also, in case no one has suggested this, push the skin away from the wafer rather than peeling the wafer up. I found this suggestion when I was having weeping skin problems and have found that by using the adhesive remover, pushing the skin away, and shaving where the wafer goes when I change I have had great success with not causing additional skin problems (other than those caused by leakage because I waited to long to change). I also found that if my output was thick that I had more problems with leakage than if it was thinner. The thick output would always pancake on me and then force itself under the appliance rather than falling down to the bottom of the bag. Due to my adhesive allergies I use a wafer that has no tape around it. It is a Hollister new image 2 piece with a lock and roll bag. So far I know that both hollister and convatec have no-tape wafers and I'm guessing that all suppliers do.

Is your daughter wearing a belt? I'm guessing that as a 3 year old she probably moves around a lot and a belt could help to get a little longer use out of her appliance. I wear one 24*7 except for when I shower. I was in a 4" nu-hope and now am in a 5" with my loop ileo due to the appliance size. They work very well for me to get the wafer to stay on. If I don't wear one I have to change in 36 hours or less due to leaks. I do have some crevices around my stoma which are flattened out by the belt in addition to helping to hold the wafer on. I'm guessing that a smaller one would work for her (not sure of her appliance size). The 1" belt did nothing for me as it got looser as I moved around.

I hope that you can find a solution soon to keep her appliance on for longer and also can get her skin healed.
Ducridr - 36 - female

Diagnosed w/ severe pancolitis 11/20/2007
Asacol - 6 (400mg) 2x/day, Xifaxin 2 (200mg) 2x/day, Prednisone 15 mg (started at 40mg Nov 08 - off June 09), multi-vitamin, calcium and vit d supplement, potassium supplement, B-12 supplement, Junel FE (BCP),metamucil capsule (1/day) Coumadin (for blood clot) 5mg/day, 1st Remicade treatment 2/4/2009, 2nd - 2/18/09. Currently getting Remicade every 4 weeks.

J-Pouch surgery #1 of 3 on 8/21/2009!!!
Surgery #2 on 1/4/2010


vette guy
Veteran Member


Date Joined Nov 2006
Total Posts : 650
   Posted 1/22/2010 3:57 PM (GMT -6)   
You might want to try putting Milk of Magnesia on her skin for the next few changings; a thin coat, and let it dry before you put on the new appliance.    It won't necessarily make her appliance stick better, but it should help to neutralize the enzymes in her stool that is causing irritation.  Also, get your daughter to a competent ET nurse, ASAP!  That's what they get paid for!!!  No appliance should last for less than a day under ANY circumstances.  And, I know there are those who recommend using a belt....but, IMHO, those darn things should be in the Smithsonian!!!  Given the advancements they've made over the years, again in my humble but 21 years with an ostomy appliance opinion, they are no longer a viable solution to a well fitting appliance!  ......Remember....EVERY problem has a solution....and we've ALL been there!!!
 
G-d knows I don't claim to be smarter than anyone here, believe me!  But, I had a lot of leaks in the beginning also.  Yet, (after finding the right solution), I have NEVER had an appliance leak within a day in over 20 years!!!  You just need to find the right solution for your daughter.
 
BTW...please give your daughter an extra hug and a kiss from us at "the forum". I'm sure she deserves  it!!!
 
Good luck!!!
 
VG

Post Edited (vette guy) : 1/23/2010 3:02:58 AM (GMT-7)


katiesmommy1
Regular Member


Date Joined Aug 2009
Total Posts : 94
   Posted 1/22/2010 5:10 PM (GMT -6)   
Ok, I changed my dd's appliance today. It was on for about a day and a half, so it's lasting a little longer than before. I've been told that a day on a child is very good. I am hoping over time it will last longer though.
Her skin looks a lot better. Not as red and irritated as before. Just a little patchy red spots. The nurse that was here today said it looked more like a yeast infection than a leakage problem. but she isn't a woc nurse and hasn't dealt with ostomy issues in years. So I am hoping a woc nurse will visit sometime early next week.
I am getting a perfect fit and there doesn't seem to be any leakage anymore so maybe as her skin heals the bag will stay on a little longer.
thank you again for all the advice. I think my mistake was using an adult wafer on my dd. She is so tiny, less than 30 lbs. the wafer was way too big for her. It leaked just not bad enough to get past the tape. So lesson learned on my behalf.
thanks again,

justjenjen
Veteran Member


Date Joined Nov 2003
Total Posts : 518
   Posted 1/24/2010 5:29 PM (GMT -6)   
There are a lot of posts here and I did not read them all--sorry if this is redundant. When my skin gets irritated due to a leak I will use powder (I think it's Pectin?). I put the powder on the area, then place a piece of gauze saturated in the powder over the area and then cover with tegaderm. I keep the gauze on the thin side. This absorbs any weepiness and keeps the powder in place to help heal the skin. Since, the area remains relatively flat the bag goes on like normal. Of course, when this happens I go from changing my bag weekly to twice a week. Good luck.

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 1/24/2010 9:13 PM (GMT -6)   
Im so  glad you are getting things alittle better anyway! Hopefully it will keep going better.
 
J'sMom-I have some eakin seal type things, only another brand, that i dont use.  I saw that you were having to cut them into tiny pieces.  Ifyou like i can send you a box and see if they work for him.  Just let me know
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007! 
-I have gone to find myself, if i get back before i return, keep me here-


Sami'sMom
Regular Member


Date Joined Oct 2009
Total Posts : 32
   Posted 1/27/2010 11:31 AM (GMT -6)   

My 12yr old was constantly irritated around the stoma. We found out she was allergic to the paste, so we switched to a strip paste and use pieces of eakin seals to seal any dips she has (her skin folds near the belly button and the eakin seal keeps from leaking into the belly button.) Since we switched pastes it has helped enourmously.

Her flanges also lasted longer after we switched.

I'm glad things are a little better. =)

 
Mom to 5 special children
 14yr old- GAD, PTSD, ODD, LD
 12 yr old- Crohn's Disease-total Colectomy Feb 09, PTSD, Dystymia, JRA, Asthma
 11 yr old- Globally Developmentally Delayed, Low Cognitive Functioning, PTSD
 10 yr old(almost)- Epilepsy, Unspecified Social/Emotional Disorder, PTSD, LD
 32mth old-Bright and Happy


J's Mom
Regular Member


Date Joined Oct 2008
Total Posts : 109
   Posted 1/28/2010 9:00 PM (GMT -6)   
Summerstorm,

That is very generous. I would love to try the seals that you have. My email is tam.hanger@gmail.com. Shoot me an email and I will give you my address. Also let me know what the shipping is and I will gladly reimburse you.
Sorry so late with the response, I have not had much computer time lately,,,,busy, busy, busy.
Thanks!!
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