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Help with ileostomy!

suzycruise76's picture
suzycruise76
Posts: 98
Joined: Mar 2019

I am looking for somebody who experienced this situation:I had a colorectal tumour surgery on May31,and left the hospital on June 7th with temporary ileostomy. After getting several instructions and help from Healthcare Centre nurses I started manage my ileostomy myself; it did not go very well,and in last 2 weeks I am having more and more accidents with leaking/peeling off ostomy. Now my skin underneath is not just irritated,but inflamed and bloody. It is not just very painful to change the ostomy every 12 hours or so (because it is peeling off and the output starts coming out),but the new one wouldn't stick properly. I even had a nurse putting the stomy on me yesterday (Friday),promising it will last...and the same night it was off,and today during the day another one. 

I don't think that any new ostomy is going to stick-and I am helpless. Who do you think I should contact and ask for help? The Centre is willing to send me another nurse on Monday,but because the skin doesn't get any treatment,I do not believe that another ostomy will last.

Any idea,please?

Thanks a lot,

Suzy

Pamcakes
Posts: 87
Joined: Jan 2018

When my husband first got his colostomy his stoma was very close to the skin. This causes terriable leakage and skin breakdowN. we had to try a few different pouches to get one that worked. His stoma nurse gave us the different samples and lucky for us the 3rd one worked perfectl. Not sure if that may be the issue or not. If your stoma is not protruding much you may need a different bag? Goodluck. Richard is about 4 months post surgery and after that first jump, he has embraced the ostomy as it saves his life and gave him freedom. 

suzycruise76's picture
suzycruise76
Posts: 98
Joined: Mar 2019

Pam for your reply. I would love to embrace my ostomy as well,but right now is not giving me freedom,more like a jail. I just need to heal my skin first,possibly will go to the ER in my hospital,where I had the surgery,hopefully they have something to help me.

All the best to your husband and you,

Suzy

Annabelle41415's picture
Annabelle41415
Posts: 6247
Joined: Feb 2009

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

Lovekitties's picture
Lovekitties
Posts: 3330
Joined: Jan 2010

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

k8's picture
k8
Posts: 30
Joined: Oct 2018

My husband had the temporary ileostomy and of the many choices for bags Coloplast worked the best. They also have a helpline phone number. It can be quite discouraging with the wrong equipment. Best advice is finding the right equipment for you specific needs and education to get it right. Hope this helps.

Nazareth
Posts: 88
Joined: Nov 2017

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

suzycruise76's picture
suzycruise76
Posts: 98
Joined: Mar 2019

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

Nazareth
Posts: 88
Joined: Nov 2017

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-

suzycruise76's picture
suzycruise76
Posts: 98
Joined: Mar 2019

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

 

suzycruise76's picture
suzycruise76
Posts: 98
Joined: Mar 2019

I should add that I learned (on the internet) about "pancaking",which is exactly what is happening to me lately,esp.at night. Stool too tight,instead of falling down the pouch just sitting on the top,and eventually pushing its way out making the appliance to peel off. I will need to pay more attention to it now,and not to let it happen!

It is helpful (at least a bit) to watch Youtube videos how other people handle their stoma care.

Suzy

Nazareth
Posts: 88
Joined: Nov 2017

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's picture
suzycruise76
Posts: 98
Joined: Mar 2019

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

Nazareth
Posts: 88
Joined: Nov 2017

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

suzycruise76's picture
suzycruise76
Posts: 98
Joined: Mar 2019

a good idea,thank you!

Kaleena's picture
Kaleena
Posts: 1978
Joined: Nov 2009

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

Nazareth
Posts: 88
Joined: Nov 2017

sorry for hte long post- those are just soem of the many htigns I've learned over the years-

one more tip- if pouch has a lot of odor- you can take some hydrogen peroxide diluted, and swich it aroudn in pouch to help neutralize the odor that has permeated the plastic- then I'd put in soem stop odor to further help-

Sorry- one more quick tip- use wintergreen tic tacks in pouch- two or 3- it wil lhelp give pouch a little nicer smell- it won't neutralize odor- but will help mask it a little, and smells minty lol- i only use htem when i have to go out or to an appointment- at home, i don't bother-

Lovekitties's picture
Lovekitties
Posts: 3330
Joined: Jan 2010

As I recall from a previous member he said you have to avoid using anything with conditioner...soaps, even on towels...around the area where the appliance sticks.

Someone also suggested using a small hand helf fan to make sure the area was dry before putting on the appliance.

Hope you find what works for you.

Marie who loves kitties

Lovekitties's picture
Lovekitties
Posts: 3330
Joined: Jan 2010

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

 

Trubrit's picture
Trubrit
Posts: 4900
Joined: Jan 2013

So very happy that the mods haven't removed his profile. 

He was a good man, with much to share while he was with us, and now passed, he can still touch lives. 

Missed John. You are missed. 

Tru

Annabelle41415's picture
Annabelle41415
Posts: 6247
Joined: Feb 2009

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's picture
suzycruise76
Posts: 98
Joined: Mar 2019

thank you very much for the link to John's blog.It is full of well-written information and advice;I am going to try some of his ideas. It is a lot,and to tell the truth,I am so sick and tired od dealing with the stoma and weeping skin,that am in bigger stress than when I got my cancer diagnoze.

And add to it that English is my second language,and I have a hard time to understand some medical expressions and putting it all together.

Right now my biggest worry is to have always enough  supplies on hand,which is not as easy for me. Too complicated...but I was able to deal with my cancer,I am going to deal with this trouble ;-)

Thank you again,

Suzy

suzycruise76's picture
suzycruise76
Posts: 98
Joined: Mar 2019

to all responders to my difficult situation. You offered me so many tips and ideas,now I need to figure out which ones would be the best match for me.

I really appreciate your time and help-hopefully with it and my nurse cooperation I will get better results.

Thaks again,

Suzy

lhduffer
Posts: 72
Joined: Oct 2015

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.

 

 

suzycruise76's picture
suzycruise76
Posts: 98
Joined: Mar 2019

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?

 

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

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 

suzycruise76's picture
suzycruise76
Posts: 98
Joined: Mar 2019

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

Kazenmax's picture
Kazenmax
Posts: 363
Joined: Feb 2016

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

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