Help with ileostomy!

Annabelle41415 said:

Skin

When the stoma leaks it causes the skin to become irritated because of the acid in the fecal matter.  It's been a long time since my reversal but remember using some type of paste to protect the skin and also a barrier.  Also, there is some type of white powder that you can sprinkle on the irritated areas that helped too but can't remember what they called it.  There are several manufacturers out there that will be willing to send you free samples of anything you might need.  You can always call one of them to help you get the right product.  Discuss this with your ostomy nurse on Monday and let her know your frustration.  It took me severals weeks to get the right products.  Good luck.

Kim

Kim, you may be thinkig of Karaya 5 by Hollister.  I hav used it for weeping skin under the barrier.  A little goes a long way.  Sprinkle on and blow off excess...fanning the area works.

I don't know about local purchasing of it, but can be gotten on Amazon.  Some vendors that handle Hollister supplies don't carry it.

I hope that a new ostomy nurse can get our friend on the road to satisfactory use of the stoma supplies.

Marie who loves kitties

suzie-You've got to deal with hte broken weeping skin first and foremost- you may need tio change much more frequnetly for a little hwile as the skin heals- Talk to your new nurse and tell her you need soem cortisone in spray form for hte skin- I use an inhaler of all things around my stoma- and it works very well to keep the skin from getting raw agaijn- 2-3 shots fro mthe inhaler is all it takes- direct it at all the broken skin-

After you get the inhaler cortison on, allow 1 minute to dry- pat the skin aroudn hte stoma- ,let it weep a little, and use stomahesive powder or karaya powder very lightly, blow off all excess powder- allow it to gum up a bit- and when dryish- spray some hollister medical adhesive over that tp seal in the paste, and create a sticky surface for the pouch to stick to- I would personally apply a thin layer of stomahesive paste over the spray too- to give a littlem ore protectionm- allow that to dry for about 2 minutes-- then apply pouch right on top of all that-

unfortunately you gotta do steps liek htis hwen hte skin gets to where it's wet from weeping- and keep at it until the weeping stops-then tyou can begin slowly sopping a step or two- until you get to healthy skin again-

You'll have to do this perhaps twice a day when your skin is hte worst- until it begins healing- it's a pain, but you must keep your waste material off the skin- i's very corrosive- Newly applied pouches will usually stick for a little while- enough so you can get a little healing going-

Also- if you can, try to keep it exposed to air for awhile when changing- keep toilet paper handy and ready to deal with the output from stoma- also keep patting hte weepy skin dry- - soem folks go for 1/2 hour or so- I've never doen htis though so can't say how well it works- my stoma is just too active-

Note also- don't eat acidic foods such as soem berries, vinegar, tomatos- etc- these will cause your skin to hurt when hte waste gets on the skin- I don;'t know how long you have to have the ilio- but you'll learn over time what foods to avoid- don't eat nuts, caggabe, brocoli, cauliflower- and try to avoid foods liek fish, seafood, eggs, etc but only if the odor from them bother you- they are actually good for you- but i don't liek hte smell they cause-

once healed though, the only hting that works for me is stomahesive paste by convatec- I have to put a very thin layer around my stoma after I've dried the skin thoroughly- allow it to dry for about 2 minutes, then apply the pouch on top of that- it created just enough of a 'dam' that it holds back the watery iliosomy fluid- for 1 day- that is all i can get out of it- 24 hours- Beyond 1 day- the paste has melted away and the puouch will leak if i try goign 2 days- I hate havign to change every day- but there's nothign i can do about it- pouch seals just do not stick to my skin well- The only ones that ever di were the hollister karaya seals- but they don't make them anymore- of course- they worked too well! I coudl get 3 days out of them- they just melted to the skin and were tight aroudn stoma- and never had leaks with htem-

Have you tried eakin seals? Some folks have luck with htose- i never did-

your new nurse may suggest a film that goes over weeping skin and protects the skin- Can't rmemeber the name- but it never worekd for me- the only hting that did was changing more frequently until the skin healed enough to go for a whoel 24 hours- and the asthma inhaler- that made a big difference- just don't use it when hte skin is good- don't want too much cortison-

One note when skin is healed- try changign first thing in the mornings- your stoma will be less active- when it 'wakes up' is when it begins outputting- if you have a problem with output- try eatign 2 marshmallows- this suppsoedly helps slow things down

You may also wanna try metamucil to bulk up the output if you'rs is real watery- This will also help to keep watery output from workign under the seal and further hurtign hte skin- I take two heaping tablespoon fulls 2-3 tiems a day- and before bed- You'll have ot experie3ment to see how much you need to bulk up output- don't use too much as it can cause constipation- start with 2 spponfuls per day- then try it twice a day- then three- go slow though

Also- Peptol bismol really helps stop ostomy odors- it binds with sulfer which is hte 'rotton egg smell' or bad odors we get i nthe poo=- , but thingsl iek fish and bocolli are a bit too powerful for it- so again avouid those if odor is a problem for you- I also use 'Stop Odor' which you can get off amazon- 15 drops in pouch seems to be good at controlling odor- it's cheaper than hollister's odor product- but keep it off ostomy, and off skin around ostomy- it will aggravate the skin-  I usually put a small piece of toilet paper in pouch, and soak it with the odor cotnrol drops- to keep it from gettign up to the ostomy- and does hte job of controlling odor

There is a powder you can apply.  I am highly sensitive to adhesive so I would get burn blisters.  I told them and they do have hypoallergenic rings.  It would still start to itch right before I needed to change.   But the powder worked pretty good.   i hope you find something that works.

Also make sure the paste is on pretty well around the stoma before applying the ring.   Call the compsny’s Help line too for free samples and help

A member who sadly passed from the disease did a great job of helping others and sharing his experiences.  The following link is to his blog here at CSN.  If you scroll down the page you will find something called Stoma Care which may contain some helpful info.

https://csn.cancer.org/user/75969/blog

Lovekitties said:

from John23 blog

A member who sadly passed from the disease did a great job of helping others and sharing his experiences.  The following link is to his blog here at CSN.  If you scroll down the page you will find something called Stoma Care which may contain some helpful info.

https://csn.cancer.org/user/75969/blog

 

What a wondeful and patriotic man he was.  Always remember his picture of him in uniform.  He was truly a man of wisdom and had many helpful tips.  Thanks for the link to his post.

Kim

suzycruise76 said:

Nazareth,

I really appreciate your long and thorough comment with so many tips that my head is just spinning around. I made notes and will discuss it with my nurse who hopefully comes tomorrow/Monday  to see me.

I was wondering,how do you do it with the huge amount of supplies you need to use while changing your ostomy so often (every day or more). If you need to buy them,they are VERY expensive. Does your insurance pays for it all? I live in Ontario,Canada,and I am getting all these supplies free under our Provincial insurance plan,but I don't think they would give me them in such a huge amount.

And when the skin is raw-is it a good idea to peel the ostomy away if it still sticks,just to treat the skin with the powder or spray...and put a new ostomy on it?

BTW-do you have a temporary or permanent ostomy? If I had permanent,I would feel free to experiment with different companies and their products,but my ileostomy is supposed to stay just several more weeks,so I don't have much time to ask for free samples etc,etc.

But I definitely need to cure my painful weeping skin soon.

Thank you again and wish you better luck with your ostomy!

Suzy

Hi Sue- yes, they are expensive- hollister medical adhesive is like $40 or so- but a can will go a long time- many months- you only use a very thin layer- I spray it on a little thick, and then spread it aro8nd with finger all around stoma in a thin layer- before it dries=- then allow it to dry- you don't want ot use too much or get it too thick- No- my insurance won't cover the spray- but my insurance does cover 1 pouch per day- if i need more, i just buy one or two boxes of pouches out of my pocket money- all the other stuff I mentioned, I just purchase myself as they aren't too expensive- and go a long ways- But the stomahesive paste the insurance does cover- - The Stop Odor product is pretty cheap- and goes a logn ways as you only use about 10-15 drops at a time

My iliostomy is permanent- i didn't know if yours was or not-- if you are only gonnah ave it a few weks, I'd just try to cure the weeping skin issue- stoma powder might be all you need- apply thin layer- blow off excess- allow it to crust- then apply pouch over top- the powder shoudl be a little gooey at that point as the weeping skin will make it like that- and will stick to the pouch seal- IF you can tlak the nurse into getting a steroid inhaler- or perhaps soem type of steroid spray- that woudl be a great thing to get- the steroids in the spray will really help skin heal- quick- it woudl be a little expensive- but worth it- if not- then just stick with hte ostomy powder as you only have a few weeks left- and see if it'll heal things up which it should

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 think it woudl be better to just keep changign hte poiuch a few times a day if it needs it until skin begins to heal- that way you expose all the skin to the air- and clean it, and dry it as much as possible-

The thing with broken raw skin is, you have to keep after it pretty aggresively i nthe beginning, until it starts healing- and you want your pouch seal to be stuck as well as possible to prevent output from getting on skin, which is why frequent changes might be necessary, at least for a few daysd-

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