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HELP... Ileostomy appliance leaking and won't stick :/

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Posted 8/18/2013 3:36 AM (GMT 0)
My brother has a 5 week old ileostomy and up till a couple of days ago he has been doing well with it. The wafers were lasting 3-4 days with no leaks. We have changed it 7 times today! The skin is so irritated and weaping around the stoma now. I feel like we've tried everything... One-piece, two-piece, flat, convex, powder, paste, barrier spray, tincture swabs, barrier rings. I just feel like I'm going to cry... He also has an abdominal mid-line incision and a JP-drain to work around.

Any suggestions? I'm concerned about his skin at this point and that he can't leave the house because of this. Help...
Posted 8/18/2013 3:47 AM (GMT 0)
Is there anything at all that changed? Detergent? Soap? Shampoo?
Did you get a new lot of wafers? Sometimes you get a bad batch. Maybe a new batch of skin prep?
Do you have powder for the skin? You can put that on the irritation, but I don't know a lot about that I have never used it.
What were you using when it didn't leak?
Posted 8/18/2013 11:51 AM (GMT 0)
Is your tincture the right kind? The kind that does not wash off with water? It should only come off with alcohol to be the "right" kind for a wafer. I have great luck with it - I dry my skin with a hair dryer & then apply the tincture, dry that with a hair dryer & it dries sticky.

With this said - if there is a lot of skin that's open and weeping - it makes it even tougher. I am currently using stoma powder on the open skin (then wiping the powder off - some will still be stuck to open skin) from there - I am applying the proper benzoin tincture to all the skin that does not have powder (the entire size of the wafer. Hair dry this for about a minute. From there - I cut my wafer to just a tiny bit larger than stoma & apply to the wafer a barrier ring. The ring - I smoosh it toward the inside of the wafer to create a turtleneck like wafer. Lastly I apply the contraption (a two piece set up).

This is what I did with my last change because I have some granulomas making it tough to get a good seal & in turn my skin was starting to burn within 24 hours. This has helped to keep the output off my skin which is essential to get the skin healing. Hope this helps and here is a link to my google document, the bottom picture shows how my wafer looks applied like a turtle neck with the ring. Your brother is very lucky to have such a wonderful, supportive and helpful advocate. :)

https://docs.google.com/document/d/12I-FIIgFc_x94-M1gfFLi-6Fis21VS9W1PLKE5h3rZs/edit
Posted 8/18/2013 11:51 AM (GMT 0)
I should add that I am 4.5 weeks out of surgery.
Posted 8/18/2013 7:03 PM (GMT 0)
The only things that have changed are the stoma size, it's healing and has shrunk a bit, and the skin is weaping.

The tincture swabs are the correct sticky ones.

His stoma is very flush and now with the irritated skin it has a sort of mound around it... From the swelling.

As for the powder - Even after removing the excess it doesn't seem to get a really dry crust. I'm sure that is effecting the adhesive of the wafer. I'm going to try and employ the hair dryer.

What do you guys do to discourage your output during all this prep and changing. We were told to put a moist 4x4 over the stoma. It works, but it he has even a small amount of output with that on, we're screwed...
Posted 8/18/2013 7:17 PM (GMT 0)
I don't eat for about 3-4 hours myself. Have you spoken with an ostomy nurse on the skin? Or even the surgeon? You may want to make an appointment.
Posted 8/18/2013 8:00 PM (GMT 0)
He has a follow up on Tuesday with his surgeon and we have a home health nurse that comes out once a week. All in all, the physicians and the nurses have been completely under-knowledgable on ostomies and care. I'm trying to find an outpatient ostomy clinic. I have had to walk the nurses through changing the appliance numerous times... We have been through such a frustrating and exhausting ordeal these last 6 weeks.
Posted 8/18/2013 8:31 PM (GMT 0)
To keep mine from outputting during the change right before I remove the bag I press on my stomach right above the stoma. That usually makes some stuff come out, then its ok for me to change.
I never tried the marshmallows or not eating thing.
Is the hole being cut small enough? It could be that since you have noticed it shrinking it is shrinking more after the bag is on and that's why its leaking.
Posted 8/18/2013 9:13 PM (GMT 0)
I had a similar experience with an ostomy nurse. If I were you - I'd call the home nursing office & adamantly request that an ostomy nurse be brought to the home. I had to advocate to see mine as well. Once I did - her help was great to have!
Posted 8/18/2013 9:45 PM (GMT 0)
Marshmallows or smooth peanut butter are the most commonly recommended. Scarfing down 5-6 marshmallows would stop my output for about 10 minutes (loop ileo) or sometimes more than an hour (end ileo).

www.wocn.org has a search to find real WOCNs (ostomy nurses) in your area. They are WAY BETTER than the home healthcare nurses, whom in my experience usually don't know s---...
Posted 8/19/2013 7:09 PM (GMT 0)
Just checking in on things...one other thought - maybe you could call the company and ask if the have an ostomy nurse you could speak with? Maybe you could send the nurse pics or do a Skype with her
Posted 8/19/2013 8:15 PM (GMT 0)
I talked to an ostomy nurse, whom with we have an appointment tomorrow, and she walked me through the application. It has now been on for 20 hours without leaking (fingers firmly crossed). Obviously the longer we can get one to stay on the more the skin can heal. Here's what I did: gently cleaned with water on a cloth, stoma powder applied with a q-tip, first layer of barrier spray, dry, second layer of barrier spray, dry, third and final layer of spray, dry, Convatech Stomahesive barrier put down with very thin barrier ring on the back, finally a flat flange and bag. So far so good!
Posted 8/19/2013 8:39 PM (GMT 0)
P3ERFECTION
"cleaned with water on a cloth"....I always wonder about soap residue on any cloth. Try using pieces of paper towel and water. Standard size cut unto four or select-a-size in two. Will clean well with no mess. And try the tincture swabs with nothing else....no powder or sprays. The tincture is s first aid product.

Dan
Posted 8/19/2013 8:50 PM (GMT 0)
Great point from Dan! I agree totally. When my skin was irritated I used Viva paper towels (very soft), if it was healthy I used woven gauze sponges (the gauze is a little rough, it makes it better to clean with but would be irritating to broken skin).
Posted 8/19/2013 9:42 PM (GMT 0)
Thanks for the update. I seem to be getting close to this same situation with regards to peristomal skin condition. I have a weeping rash with peeling skin & my granulomas cause trouble with a good seal. The one granuloma is rather large (to me). Next change I plan to try the cavillon barrier film wipe that a wonderful forum member sent me.

So happy you've been able to get hold of someone who has helped so far :)
Posted 8/20/2013 7:26 AM (GMT 0)
I seem to have a totally different routine to everyone else but mine works for me. I'm quite regimental when it comes to changing my ileostomy bag. I wear the 1 piece pelican bag which I change EVERY evening before bed. I have a shower (with the bag on), dry myself off and change the bag. The 1st thing I do after removing the old bag is wipe it when the complimetary tissue/towel type thing, then I clean it with 2 adhesive remover cloths, I then use a dermocol thing to place round the stoma and keep it upright as I have a prolapsed stoma and then I place the new ileostomy bag over the top of that, leaving a small gap round the dermocol so that it has enough room to breathe. I find it works best for me that way as I like to have a shower everyday and I am confident enough of not having leakages because everything gets changed within 24 hours every time. I keep seeing people putting about changing their bags once a week but that was never explained to me by my stoma nurses so I don't know how that system works???? I assume they are different types of bags altogether and what happens after showering, do you have to dry them with a hairdryer??
Posted 8/20/2013 9:46 AM (GMT 0)
petal1752 - I think for many of us, the reasons not to change daily would be our insurance doesn't cover enough supplies for a daily change & some people's skin doesn't hold up well to daily removal of the appliance. However - I can see where taking it off after a shower would help to soften the adhesive & be easier on the peristomal skin. Yes, I take the hairdryer to my pouch after a shower :)
Posted 8/20/2013 6:54 PM (GMT 0)
I can't imagine changing once a day I think that would be hard on my skin. I find that if I have leaks they happen in the first day more often than not. I usually change once a week, although just now I went 8 days.
I wear a sure seal over the flange so it doesn't get wet, then I use a hairdryer on the bag part.
It is up to what each person finds works for them though.
Posted 8/20/2013 7:53 PM (GMT 0)
We all have VERY different schedules and systems when it comes to the pouches and how/when to change. All that matters is figuring out what works best for you, and not worrying about why anyone else seems to do it so differently. I am over 5 months out of surgery and still don't have a permanent system down. Sometimes I change after 3 or 4 days, sometimes I make it 6 or 7. I am still figuring out which bags I like best...I think I've narrowed it down to Hollister and Convatec...both having a list of pros and cons that are making it hard for me to decide. Sometimes I use paste....today I'm trying a barrier ring. I would love to use precut wafers, but not sure I'll find the right size for me...and the Convatec wafer I've been using doesn't come precut. There are SO many things to consider in all of this....sorry to ramble!!

As far as showering....am I the only one who does this? Most of the time I will take the bag off and shower with just the wafer on. That way I don't have to worry about drying the bag, and I get to clean the stoma a bit. I also feel like my stoma likes being out of the bag. Sometimes he gets a lot bigger than normal, and if I snap the bag off for a minute he shrinks back down. He's fascinating!
Posted 8/21/2013 1:24 AM (GMT 0)
UCwhat? - awesome idea! I am definitely going to shower this way from now on!!
Posted 8/21/2013 8:23 AM (GMT 0)
Summerstorm, I find my skin is a thousand times better since changing my bag everyday. I use 2 adhesive remover wipes to get rid of the stickyness from the bag and it cleans the skin up great too, even leaves a minty tingle on the skin for a few minutes which feels amazing. wink
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