New ileostomy- trouble getting secure seal

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momrk
New Member


Date Joined Jan 2009
Total Posts : 4
   Posted 1/14/2009 11:45 PM (GMT -6)   
Hi,
 
I hope it is alright for a mom to post here. My 27 yr old son had his colon removed two weeks ago (ulcerative colitis, diagnosed at age 22) and we are having a lot of trouble getting a good seal and have ended up changing bags often- anywhere from 4 to 18 hours. I do understand this is a learning process, and that it hasn't been that long, but today was a rough day, so I am looking for ideas and advice. We have been surfing the internet, trying to find hints to help us. We have been using a blow dryer which seems to have helped. Biggest area of problem is near the navel, which from reading I can see is not uncommon.
 
He is using a convex appliance, and we have tried both one and two piece units. That doesn't seem to make a big difference. I do know that the size of the stoma will change so we have been trying to be very mindful of that and trimming the seal each time. He does have a visiting nurse coming, but she has had no better luck than us, in terms of getting a seal to not leak. Of course, his skin is rather irritated with all these changes, and he is worried about ever being able to go out of our house (let alone return to his own house and to work).
 
So, if anyone has any thoughts or advice, and time to share, they would be much appreciated.
 
 

Bennie
Veteran Member


Date Joined Nov 2006
Total Posts : 550
   Posted 1/15/2009 1:17 AM (GMT -6)   

I don't have any great suggestions but I wanted you to know it did take my daugther time to figure out what worked. And in time, she did start going out.
My daughter found the Hollister New Image convex wafer worked the best for her. She used stomahesive. We would put the stomahesive around the wafer hole (even a bit over into the hole), wait a minute or so, and then she would put it on. For her, waiting that minute started to make the paste less gooey so it didn't mush so much when she pressed down on the wafer.
Unfortunately there is no one answer as everyone finds something that works for them. It will also get easier and faster changing the wafer as time goes on.
Good luck.


--Mom of bratcat (17 years old) and nonamejames (20 years old)--
Daughter bratcat was diagnosed with pancolitis October 2006
Flared Fall 2006, Fall 2007, Spring 2008
Asacol, Rowasa, hydrocortisone enemas, prednisone, 6-mp, Remicade
7/3/08-Step 1 j-pouch surgery and no more meds!
11/10/08-Step 2 reconnect!
 
Son nonamejames was diagnosed with Crohns in Spring 2008
Asacol, Pentasa, 6-mp


Miss UK
Regular Member


Date Joined Oct 2007
Total Posts : 128
   Posted 1/15/2009 4:12 AM (GMT -6)   
I don't have any useful suggestions but I do know that it does take time to find the right thing that will work for your son and once it is found he will be able to live a great life.  I had constant trouble with leaks I've had mine 8 weeks and it was only last week that we think we've found the solution.  I now use Convex pouches and cut a hollister ring in half to make a strip and put that round the opening before putting it on with loads of heat! though my nurse thinks I could do without the ring but it's working for me so I'm a bit loathed to try without.  Good luck to your son tell him not to loose hope there are many many things to try :-)
36 year old single mum to a 2.5 year old son
Suspected Crohns when 10 years ago had a very painful rectal abscess
Diagnosed with Crohns desease properly 6 years ago
2008 developed fistula bowel perforated onto bladder resulting in temporary ileostomy
hopefully a reversal around March 2009.


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 1/15/2009 5:39 AM (GMT -6)   
momrk,
 
Welcome to Healing Well. I'm glad you found us! :-)
 
I had the exact same problem in the beginning, and here's what I did to fix it. I ordered wafers that are a size larger and cut the hole off to one side. I moved the stoma guide up and to the left a little when marking it, so that it moves the wafer a few centimeters away from my navel.
 
Once I put it on, I lay down and hold my hands over edges to warm them up and smooth them out. This can take a minute or two. Then, I wait to put on any clothes that are tight, like jeans, until I know I have a good seal.
 
The other thing that helps is to shave the hairs off the belly around the stoma and make sure the skin is completely dry.
 
Also, the paste is not an adhesive. I don't know why they call it Stomahesive! That just confuses us. Just put a small amount of it around the hole that you cut in the wafer. It will keep the output from getting onto the skin, which will prevent leaks.
 
I've had excellent results, 7+ days of wear time, with the Coloplast Assura Extended Wear wafer (item #2833) with matching pouch (item # 13986). I highly recommend them! The wafer has a built-in skin barrier, so it is meant to go onto dry skin.
 
I hope your son is doing well. The good news is that he is UC free for life! smilewinkgrin


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


momrk
New Member


Date Joined Jan 2009
Total Posts : 4
   Posted 1/15/2009 10:07 AM (GMT -6)   
 Thanks to all of you who have responded - I appreciate your encouragement and suggestions and will share them with my son. I am grateful that he isn't having any medical complications, just this technical one.  We might try the stomahesive again. I think we were using too much, and he hated trying to get it off. Plus, it didn't seem like it made a difference. Last night I did try to position the bag a little differently, and it held overnight and so far, so good today.  So, we will see. Again, thanks for your responses, I can see this is a real learning process.

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 1/15/2009 11:30 AM (GMT -6)   

momrk--welcome to the forum!  Don't get discouraged, you'll both get the hang of it...

Here's my 2 cents:

Be careful what you use to clean the area with.  Some soaps can leave a residue and that will cut the wear time.  I use Dial (hate the smell but have never had a problem), some use Neutrogena and I think Ivory is okay too.  His skin will be sensitive since you've had to change so much.  Once he can get a day to two you'll see improvement quickly.

LESS IS MORE.  Meaning that if you use too many products, you could cause less wear time.  I don't use skin prep.  It leaves a film on your skin and some wafers won't hold as well.  You could also take the wafer tape off without remover (maybe not so close post op tho) by holding the tape and pushing the skin.  Don't every try to pull off the tape...it will damage the skin.

I also use an Eakin Seal (in place of stoma paste).  My stoma area is uneven and it helps to fill in the "low" spot and keep a good seal.  It is just like stoma paste but it comes as a ring that can be moulded to the stoma's size/shape.  I apply mine right to the wafer and then put the combination on.  I also have a need for convexity (my stomach is funky with all the scars) not to mention my stoma is small. 

The area around my belly button dips in a lot (I don't have one, just a scare) and has a wrinkle.  For a while I would cut the wafer tape (almost half moon) so that area would be avoided.  Once my skin healed I left the whole piece, just position it strategically.  The wafer should still hold...just don't go too close the the important ring of the wafer.

You mentioned that the home health nurse has been helping you...do you have an Enterostomal Nurse you can get help from?  It might be worth a trip to the doc's office to see one.  I had great home nurses, but they don't have the knowledge and ET nurse does! 

Please let your son know that in a few weeks he will forget all these problems!!!  We've all had them and they are a distant memory now yeah    Keep asking your questions and mention to your son to join too!!


pepperann27
Regular Member


Date Joined Dec 2008
Total Posts : 147
   Posted 1/15/2009 6:39 PM (GMT -6)   
I use stomahesive paste around the hole, then I use adhesive spray and spray all over the wafer and then I spray my skin where the wafer goes, wait a few seconds until it gets sticky and put the wafer on and it seems to help it stick better wink
thanks, Dusti

Diagnosed with colonic inertia at 13 years old, had my colon removed.
Diagnosed with rectal inertia at 16 years old, had my rectum removed and had a jpouch made.
Diagnosed with small bowel inertia at 18 years old, and got an ileostomy wich I still have. I am 27 now.
If you want to know more, just ask me!


Ohio43
Regular Member


Date Joined Aug 2007
Total Posts : 212
   Posted 1/15/2009 7:26 PM (GMT -6)   
Momrk:

I swear by the Eakin Seals as well. I wear a one piece and put it around the hole on the pouch. I then use a blow dryer and run it around it for about 30-45 seconds (don't leave it in one place). Then I put the pouch on and push and hold all around the stoma area. This gives me an excellent seal. I do my changes twice a week when I come out of the shower. I make sure to take the pouch off before I get in the shower so I can get it really clean. I don't worry about making a mess like some people do. I use the hand held shower messager to clean up and then I disinfect real well.

Before putting the pouch on, I also use a 3M Cavilon Barrier wipe.

Good luck!

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 1/15/2009 8:42 PM (GMT -6)   
these are all great suggestions!

if none of them help you, post exactly what you are doing, including what kinds of soaps he uses. step by step and we can all look and see if there is something that is going wrong.

momrk
New Member


Date Joined Jan 2009
Total Posts : 4
   Posted 1/16/2009 4:37 PM (GMT -6)   
Again, thanks to everyone - we employed some of these suggestions, and the current bag is doing well. Might set a record, haha! At least it has given us a break from feeling like we have to check it every two minutes. He has gone over 24 hours with this one, yea! Of course, there is no guarantee that we will get the next one right, and I feel like I will continue to check back here.

Your suggestions for specific products have all been very appreciated, as well as everyone's willingness to continue to help us trouble shoot. Thank you, thank you.

peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 1/17/2009 12:49 PM (GMT -6)   
momrk -- I am curious. Is the seal still holding? How many hours did your son get on this last change? I sure hope that you/he find the best system for his wear time. Summerstorm mentioned the information that would be the best to help us better help you... posting exactly what you are doing and products being used, if you have the need to get more information.

Enterstomal Therapists (ET's) are a huge source of information if you have one available to you. Home health nurses are not usually trained in the specific area as the ET's are, but they may be able to offer suggestions as well.

Best of luck to you and your son. Hang in there. You are right, it is a learning experience and to be honest, a very individual one at that. It seems that everyone's body is so different from the next guy.
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


LittleE
Regular Member


Date Joined Mar 2008
Total Posts : 137
   Posted 1/18/2009 12:30 PM (GMT -6)   
momrk-

I am glad you are having better luck lately with the ouch staying on your son! :)

Just wanted to also echo what flchurchlady said-

-I, too, have to cut the hole in my wafer off-center or it won't fit well
-I also use stomadhesive (aka paste), with great success. Just put it around the hole you cut (on the sticky side, of course :-) ), and when you press the wafer onto the skin, the paste should literally seep out and around the stoma. It will not hurt the stoma. It will protect him from leaks!
-Assura Extended Wear wafers last really long for me! (I am fairly young -28- and active -I work out and am busy at my job!)

Good luck! Sounds like your son is adapting fast!! :-)

-E

dilatante
Regular Member


Date Joined Jan 2009
Total Posts : 125
   Posted 1/18/2009 7:35 PM (GMT -6)   
Have you contacted his ET(cwocn) nurse?? She may have suggestions also. I don't know what I would do without my CWOCN, she is saving my sanity currently!! Someone suggested, or you said you're using a blow dryer. That's one of the things Diana and I do. She also builds up a "barrier" on my skin using the powder and skin protectant. I have had major problems with leaking while at work. I'm a nurse, and have worked 5 nights in the last two weeks, and have had leaks 3 out of 5. Diana, met me yesterday morning, to redo my ostomy and try to prevent leaks during the night last night.I didn't have a leak!!

momrk
New Member


Date Joined Jan 2009
Total Posts : 4
   Posted 1/18/2009 7:39 PM (GMT -6)   
Hi,

Sorry to be slow to respond to the last group of posts; balky internet connection. We are having very good luck using Hollister convex bag with extra wafer. Putting the wafer on against the skin first, then putting the bag on on top with hole cut more oval and a little off center seems to have be helping a lot. Also, a nurse advised him to wear the belt which he hates, but is doing. The belt I guess is creating a lot of itching, and he is experimenting with how tight to have it. The last pouch stayed on for almost three days, and visiting nurse wanted it changed to check the level of skin irritation. All the earlier changes had really irritated the skin around the stoma. The current unit has been on since yesterday morning, and seems to be holding well. We are also trimming it around the navel which also helps.

We are using a pwder that has no alcohol, as the previous one had a little. This new powder is one we got from Hollister, but I would guess others make something similar.

I don't know which of the many things we are doing is the key one, but we really feel like we have some breathing room now. His energy is still pretty low, but hopefully that will return soon. I think everyone is feeling a bit less overwhelmed.

OHIO76, your advice about less is more was helpful and echoed what one of the nurses suggested. We used just the powder on the last change, primarily because of the skin irritation caused by previous changes. Most of the skin preps we had contained some alcohol and it was suggested that with the problems we were having with the seal plus the irritation it was causing, that omiting that step was worth a try.

LittleE, thanks also for your note- nice to hear from someone so close in age to my son.

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 1/20/2009 11:53 AM (GMT -6)   
YEAH!! He'll get his strength back a little everyday!! The belt will probably be a temporary thing...I only use them post op and once I am comfortable with the seal I am getting and I am not struggling to just get up out of a chair...I stop using them and I have never had a problem. I think they do help especially when you cannot get a complete seal because of staples or healing incisions...

Keep up the good work!!!
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