Should you change your colostomy bag laying down or standing up

[LOSTnut]

Hey,

I have looked and searched and there is so much information that I feel I am getting even more confused and thought I start a new thread regarding help with the stoma appliances.

I just got released from the hospital on convatec and while I am not thinking I am doing anything wrong I keep leaking under the wafer. My skin is now so red and irritated that even cold air makes me tear up when I have to change the damn thing yet again. Yesterday it was 3 times during the evening -- pretty much every 2 hours and the last time I was just screaming when I applied the sticky stuff.

Currently, I the home health is nurse coming but I am not sure if she is or would be the right person to talk to about what appliance would actually be good for me or who to contact to get samples to try out what would work for me. I don't have a stoma nurse or wound nurse and since the discharge from the hospital I feel a bit kicked to the curb.

I am on CF every day looking for anything that might help and am not sure if, for example, I should my family let me help change the bag while I lay down or be an active part and stand up for it and do it mainly myself and just have a helping person for now hand me what I need.

I checked pretty much all the links that are provided (some of them don't really work anymore) but since I am not quite sure what I am actually looking for it is hard to figure out.

You also mention sprays and wipes -- I haven't seen anything from anybody. I had to buy some supplies on emergency because the stuff from the hospital didn't last long after I got home and am now expecting a "starter kit" from Hollister without having a clue what it contains.

Is this normal?

What I have is:

The wafer and the pouch
Paste to put around the stoma cut-out
Sticky wipes (that burn like hell)
Alcohol wipes (that burn currently too because the skin is irritated)
Regular baby wipes to clean the skin

Please help!!!!!

 

[CDDad]

Hi Lostnut,
I use Hollister myself, but everyone is different and you really have to at least try the 3 main brands. I tried Convatec and it did not work for me. The paper material of the wafer would lift while I was in the bath. I also tried Coloplast, but I ended up back to Hollister which what the hospital trained me on. The method they taught me did not work for me, and I had leaks under the wafer.

From reading here, and on the UOAA forum, I discovered the Hollister Adapt ring. This is similar to the more popular Eakin rings. The rings are moldable and very sticky. I enlarge the hole in the ring just enough and press it on to my skin tightly around the ostomy. Then I apply my wafer. The Adapt ring is what made the difference for me - no more "output" touching my skin.

If you are using the moldable Convatec wafers, then this may be different for you. The Hollister wafers are not moldable.

I also use the "No Sting" adhesive remover.
http://www.allegromedical.com/ostomy-supplies-c529/remove-adhesive-remover-wipe-p176642.html

I use that to help get my wafer off, and then clean up the adhesive left on my skin. I do this in the shower.

So for your list:
The wafer and the pouch - Great!

Paste to put around the stoma cut-out - Everything I read says not to use paste. It is only to be used to fill in crevices in the skin - not as an adhesive.

Sticky wipes (that burn like hell) - Not sure - are these the skin barrier wipes? They also make a "No Sting" version. i dont use them anymore because I don't have any skin issues.

Alcohol wipes (that burn currently too because the skin is irritated) - don't use these!

Regular baby wipes to clean the skin - Nice! I take off my wafer just before a shower in the morning and soap it up in there with Dial gold. it's nice to give the skin some wafer free time in the shower. I don't (usually) have any output in the morning.

Check out the UOAA forum at http://www.ostomy.org/forum/index.php
It is a good resource in addition to this great forum!

 

[LOSTnut]

Thanks, Joe!
Today finally the Hollister Startet Kit came and I already watched the CD which helped a bit in explaining what is in the box.
I now have high hopes to soon be able to sit up more and research some of the suggestions you made.

Again, thanks for responding.

Heike

 

[Nyx]

I'm not much help as I don't use any of the wipes or adhesives (having a colostomy has it's advantages as it turns out). But I just soak in the tub to loosen my appliance and it comes off really easily with very little adhesive left behind. Then I just clean the area with soap and water and walk around for a bit letting Oscar air out...lol I usually leave my appliance off for about half an hour, just to let the skin breath and dry really well. This might be difficult for people with ileostomies though.

Here are the numbers for the major companies, just call them up and they'll talk to you about your needs and send you free stuff!!

Hollister - # 1-888-740-8999
Convatec - 1-800-422-8811
Coloplast - 1-800-533-0464

Hope this helped

 

[LOSTnut]

Thanks, Cindy!
I will definitely make a point to call Hollister, which I am using as we speak and the Coloplast people. Not sure if the Convatec is interesting at all cause their product pretty much caused all the trouble I am in right now.
But, I can already say that the Hollister stuff works well so far and I have high hopes of being able to keep this one on longer than a couple of hours.

Yay Me!

 

[Silvermoon]

Hey Nut! I am brand new to this stoma-thing so i am still learning... but I have found jsut from reading the forums that these guys already told me most of what the stoma nurse taught me yesterday....

The only thing I noticed is you said you use baby wipes to clean the skin. Again, i am just going on advice the stoma nurse gave me, but she specifically said no baby wipes - just soap and water - as even "plain" regular baby wipes can have a lotion or something in them that would leave a residue on the skin and make the appliance not stick.....

So that would be my only suggestion is to give that a try, just plain old soap and water.... maybe if you have a hair dryer using that on a very low speed an heat to help dry the skin after????

Just a thought :blush:

 

[Guest]

i wouldn't blame the actual appliance you're using just yet - of course it's possible that the fit, cut, or even the adhesive a particular design has just doesn't suit you, but it's more probable that it's simply that your skin has gotten itself onto that very painful and distressing roundabout of being so sore that cleaning & adhesion is difficult, hence it gets more sore & promotes more changing/cleaning...

i've been there, many times, and last year i (an old hand at stoma care!) went crying to the stoma nursing staff because i just couldn't cope. sometimes nothing you do seems to work.. and at that point you need to change how you're doing things..

the skin surrounding your stoma is at risk from two elements.. the removing of appliances, and the seepage from your stoma - what comes out will burn the skin, sometimes to the degree it starts to weep, and then adhesion of an appliances becomes ridiculously difficult..

i'd recommend first of all you have a warm bath, with no appliance on.. wait until a quiet time when you haven't eaten for a while, and don't use any soaps or shampoos in the bath, just let the skin soak in warm clean water (you can always have a shower afterwards if need be)... then pat that area of skin dry, don't rub, with a soft dry wipe (i use those thin coloured kitchen cloths), and make sure the skin is totally dry right up to the base of your stoma, especially underneath it.. once dry, you can wrap some tissue around the stoma to keep it dry and to catch any output, while you're getting the appliance.. make sure the apperture is cut exactly right for the size and shape of your stoma, and if you can get hold of any pastes or barrier rings, all the better.

i poke my thumb through the hole in the bag to open it out just before applying, and then slightly bend the flange back so you can stick it around your stoma carefully and methodically, starting at the underneath of your stoma, and working your way up until it's in place, then quite firmly press the flange on, particularly around the stoma base.

try not to change too often.. the skin needs a chance to heal.. and get hold of some adhesive remover spray.

i would recommend not using any type of impregnated wipes, like the alcohol ones or baby wipes... just plain old water, one damp cloth for cleaning, one dry one for drying. every few changes, i give the skin a proper wash with hand soap, but the changes in between it's just warm water.

also, have a look on the internet, or ask one of the manufacturer advisors, if there is an ostomy supply delivery service in your area.. these services are really good, and they stock all the extra bits like sprays, pastes etc.. plus they often send free samples if you ask, and can advise you too..

it might be worth looking at convex flanges for a little while, until your skin heals.. they are designed to keep the stoma pushed up and away from the body a little, and the flange adhesion immediately around the stoma seems to be better with these designs, for me anyway. there are some convex flanges which are very hard and i found not nice to wear, but others are more soft and flexible.

 

[Outpatient]

I am so sorry to hear that you are going though that. There are different past, o-rings and sealers that can help your bag stay on. I also highly recommend using a Ostomy belt that helps hold you bag on. I have not had a leak since I started using one. Maybe you need a different setup. a try a O-ring instead of the past. As far as the red painful skin, I have been there and what worked best for me is the coloplast prep protective skin barrier product number 2041 and the coloplast ostomy powder product number 1907. I also think it is a great idea to call hollister and talk to them. they are incredibly helpful. Good luck!

 

[LOSTnut]

Thanks sooo much everybody for caring and helping. Finally, one of the home health nurses had brought over a skin barrier which brings a lot of relief. I am currently trying the convex/concave (?) not sure which but I don't seem to be able to go longer than a day, which in itself is progress for me right now.
I already visited the websites that you provided and plan to call tomorrow because the other thing with the constant changing is the fact that I am always low on wafers and scared that one more leak will send me back to the emergency room just for dressing the stoma.
Again, thank you all for caring. I am now off to the dietary thread to see what I need to eat to thicken my stool and if that might help to prevent the daily leaking.

Hugs to all of you! :hug:

Heike

 

[LOSTnut]

Update:
I will receive samples from Hollister and Coloplast, hopefully soon.

Again, thank you for the phone numbers and all the tips to get a grip on this issue.

Heike

 

[katiebel]

Did you get the adhesvise remover? would not use alcohol because of the burn. Also the stoma care powder is good just put some on very lightly. I also just got home from the hospital with my first stoma and received the hollister kit.

 

[Christie]

Hi I had problems with mine I was in agony and was changing it 10 times a day and it turned out that it was on a tilt so I had to have a bag with a 'hill' to help put it straight