Help with ileostomy!

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  • suzycruise76
    suzycruise76 Member Posts: 163 Member
    #22
    lhduffer said:

    Ostomy Help

    You have received some good advice.  I did experience leaking and skin excoriation with my temporary ostomy as well in the beginning (back in 2016).  I felt like a prisoner in my home as I was afraid to go out due to an unexpected leak. 

    I found the online forum at ostomy.org and also found some very helpful suggestions.  I also went back to my ostomy nurse at the cancer facility.

    Because my stoma had somewhat retracted and was irregular, they suggested I go with a convex appliance and I found one that I used by Coloplast that wound up working well for me.

    As has been mentioned, you must get the skin healthy, which is difficult while the appliance is leaking.  My ostomy nurse had me sprinkle desenex (actually a foot powder) on the raw area along with using the the skin barrier after, the protective seals and the barrier strips.  Some of this advice also came from the ostomy forum.  It was a process but did work and I was able to resume golf in the Florida heat and have the appliance last 4-5 days.

    Hoping you find something that works for you soon.

     

     

    Ihduffer,

    thank you for your suggestions. Just today I had a good feeling that I got to the roots of the problem as my ostomy lasted 36 hours,and was hoping for more. But unfortunately it was too big a wish-and I am back to the dealing with really painful skin and a new ostomy sitting on it. My nurse is scheduled to come to see me on Friday-well,the nurses change,I don't see always the same one,and each one of them doesn't have anything else for treating the skin just the powder plus the protective skin barrier. Actually,today I used first time Cavilon-No Sting Barrier Film which they sent me from the Home care center. It really didn't sting (which I can stand),but how about really helping the skin? Hopefully tomorrow is going to be a better day?

     

  • suzycruise76
    suzycruise76 Member Posts: 163 Member
    #23
    JanJan63 said:

    I'm sorry if I'm repeating

    I'm sorry if I'm repeating anything, I didn't read all the replies. I use the Adapt stoma powder from Hollister to soothe any burnt or irritated skin. I do not use the paste as I find, for me, it doesn't last as long. I was using baby wipes to clean the area and never had a problem but my husband bought some different ones and I started having mine loosen up in a day or two. Now I've gone back to just using water. Make sure it's good and dry before you put another one on. And make sure to lie down with your hand over it for ten minutes after you change it so it adheres well.

    Good luck. Mine occasionally leaks for no particular reason, usually at night but once at a play that had been expensive to go to. I cried all the way home, which was an hour and a half. I've had mine now for over five years and it's not wonderful but every time I'm in the hospital it's a Godsend. And it's far better than dealing with the IBS I had for years.

    Good luck, it's a horrible feeling worrying about that. I think the most important part is to dry the area as much as possible before putting a new appliance on.

    Jan 

    JanJan,

    thank you for your response. I read many of your posts,and I know that you used to have an IBS and having permanent ostomy. I think of you every day lately when I discover that my ostomy is leaking AGAIN,and think what it would be like to do it day after day ....

    I am using the Hollister powder as well and Protective skin barrier on the top of it. Last time I did 2 layers which I saw on Youtube video and had been recommended.It lasted the longest in about 10 days-all 36 hours! But unfortunatelly I am back to dealing with it.

    I always try to have the skin area dry,using blowing fan;do not use any paste as I had read that most people do not have a good experience with it.After applying the whole thing I either hold my hand on it or sometimes warm it with my hair dryier;still not good results.

    I am sure that the main thing is to heal the skin...but somehow I am not able to achieve it.

    I have one more question,but I am going to make a new tread.

    Janjan,I wish you all the best,and thanks again,

    Suzy

  • Nazareth
    Nazareth Member Posts: 88 Member
    #24
    suzycruise76 said:

    Nazareth,

    thank you again. I will quote you here: "As for peeling hte pouch away to reapply spray or powder, I've never done that- I've always just changed hte pouch when it needed it when my skin was bad- I wouldn't trust the pouch seal if i pelled it off, then restuck it with the spray- maybe it owudl be alright, I don't know-"

    I didn't mean to reapply the used pouch,I am sure it would not stick; I meant to apply a new pouch...which is-in a way-waste.

    I had a nurse to see me yesterday,but my pouch was well sitting,and-being VERY low on supplies-we did not peeled it away,which means my skin stayed without treatment. My nurse promised to re-order more supplies (they had been promised to arrived yesterday,but had not because some misundestanding if i really need so much (!)  My ostomy started to leak at 9PM,so I had done all the steps, using the powder and after funning it away I always use  Prep Protective Skin Barrier wipes by Coloplast as instructed by my nurses.The wipes should be helping healing the skin as well. I think it is the combination with the powder. I let the skin to air as much as possible,and put a new appliance,which sits well -it is 12 hours now. 

    I hope to get my supplies today and another nurse's visit is scheduled for Friday. I am waiting for my surgeon's info regarding the spoma reverse....not sure how soon it is going to happen.

    Thank you again Nazareth,your advice is greatly appretiated,

    Suzy

     

    well, it's not a waste when

    well, it's not a waste when you are forced to deal with broken weeping skin- the goal is to get the best seal, for as long as possible, while the skin is in this condition- and that will mean changing more frequently for a little while= the goal is to get the skin healing as quickly as possible, and changing more ofte, thus preventign output ot get under the seal too often, is key to healing hte skin- and htis cna really only be accomplished by changing freuently for a couple f days- the seal on each new change iwll usually last for a little while beofre the output content gets too far under the seal

    Dealing with these issues is a real pain- I try to have a couple of extra boxes on hand for times when the skin gets bad- but my output is so loose- watery, that i can only get 1 day at msot when skin is good- so i have to change every day- fortunately my insurance does cover 1 per day-

  • suzycruise76
    suzycruise76 Member Posts: 163 Member
    #25
    Nazareth said:

    well, it's not a waste when

    well, it's not a waste when you are forced to deal with broken weeping skin- the goal is to get the best seal, for as long as possible, while the skin is in this condition- and that will mean changing more frequently for a little while= the goal is to get the skin healing as quickly as possible, and changing more ofte, thus preventign output ot get under the seal too often, is key to healing hte skin- and htis cna really only be accomplished by changing freuently for a couple f days- the seal on each new change iwll usually last for a little while beofre the output content gets too far under the seal

    Dealing with these issues is a real pain- I try to have a couple of extra boxes on hand for times when the skin gets bad- but my output is so loose- watery, that i can only get 1 day at msot when skin is good- so i have to change every day- fortunately my insurance does cover 1 per day-

    Nazareth,

    you say "fortunately my insurance does cover 1 per day"- you are lucky! My free (provincial  covered plan) assumes that 1 appliance should last 7 days,or at least about 4. After some discussions they let me order a bit more,so I had to find a store where to buy the wafers (they come in boxes of 5,while the bags are in boxes of 10...does it make sense?Not to me).

    It is definitely big pain...you know where,right? ;-)

    Thank you a take care of your stoma,

    Suzy

  • Kazenmax
    Kazenmax Member Posts: 463 Member
    edited July 2019 #26
    Skin barrier

    just wanted to add my experiences. i was using skin barrier and the wafer would not stick or would fail. My stoma nurse recommended NOT using the skin barrier and that actually solved the issue.

    i do not use paste. I sometimes use barrier rings if output is loose but mostly not. I found that the best way to heal skin was to expose it to air. After I take a shower with everything off, I sometimes lay down in bed for a while. I usually have paper towels just in case it starts up but I try to shower during a slack period. Typically I use pure aloe around my stoma and wait til it thoroughly dried before putting on the wafer.

    ive had this since 2016 and have only had 2 accidents and those were from havng a stomach flu. No skins problems. I hope this resolves for you soon.

    k

  • Nazareth
    Nazareth Member Posts: 88 Member
    #27
    suzycruise76 said:

    Nazareth,

    you say "fortunately my insurance does cover 1 per day"- you are lucky! My free (provincial  covered plan) assumes that 1 appliance should last 7 days,or at least about 4. After some discussions they let me order a bit more,so I had to find a store where to buy the wafers (they come in boxes of 5,while the bags are in boxes of 10...does it make sense?Not to me).

    It is definitely big pain...you know where,right? ;-)

    Thank you a take care of your stoma,

    Suzy

    you can likely get your

    you can likely get your doctor to write out a 'medical necessity' script if you can't wear them longer-

  • suzycruise76
    suzycruise76 Member Posts: 163 Member
    #28
    Nazareth said:

    you can likely get your

    you can likely get your doctor to write out a 'medical necessity' script if you can't wear them longer-

    A good idea

    a good idea,thank you!

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