i know this has been asked plenty of times ( what system do u use?)

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praying4healing
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Date Joined Dec 2007
Total Posts : 739
   Posted 6/15/2008 8:00 PM (GMT -6)   
I know this has probably been asked millions of times, including by myself b4 i got the surgery. So naturally i cant remember the responses, or find the post.  But i was wondering what systems you guys use and what you like most about it? I'm trying to expand my supply horizons lol.  Its getting hot out, and the bag seems so big.  Sometimes it gets like a balloon which i understand (filters dont work).  but i was just wondering about systems for longer lasting, better hold up in showers and swimming, better for swimsuits and intimate times, and less leakage, easier changing etc.
 
N e help would b greatly appreciated :o)
25 y/o female- crohns disease since 14
Ileostomy pending-very worried
Tried asacol,pentasa,prednisone,remicade,6mp,azasan, no avail
Seatons placed
Worst year ever!

"For God has not given us the spirit of fear....."
Where does mine come from?!
 Temp Ileostomy performed 1/29/08
Still Adusting
 Healingwell.com has been my Godsend...Thank you


summerstorm
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Date Joined Aug 2006
Total Posts : 6571
   Posted 6/15/2008 8:21 PM (GMT -6)   
i use the hollister new image lock and roll, and i get good wear time, and i dont' have much problem with gas anymore. For swimming, if anyone other than my family will be there, i change to the mini bags, they are just easier to hide under the suit. Even though the big ones don't show either.

LittleE
Regular Member


Date Joined Mar 2008
Total Posts : 137
   Posted 6/15/2008 9:28 PM (GMT -6)   
Hi praying...
 
I feel lucky that since I have had my (1 month old) ostomy, the products that I have first tried seem to be working GREAT.  I have been changing my system every 5 days (just to be safe--I am so paranoid about leaks!  but none yet-), and even after 5 days it is hard to pull the wafer off...!
 
I am using the Coloplast Assura line, and I get the "Extended wear" wafer...I take showers at least once a day, and have been walking outside on really hot days and sweating a lot...but still it stays well.  Cecilia has said she uses the same type and they have worked well for her :-)
 
The Assura line I believe comes with 2 sizes of regular bags, and I use the smaller ones....there are also mini-bags available which are even smaller and contoured at the bottom to fit your body well (they get skinnier at the bottom), and they fit the same wafer.  And lastly, this line also makes stoma caps which fit the same wafer for intimate times, if you are sure you are not going to have much output (they are Really small...!).
 
All my bags use velcro, which I like. :)
 
My problem is I am still having a hard time finding pants....my stoma is low, and all of my pre-surgery pants sit Right on it....so I have been buying pants that ride a bit higher, but I am still not liking wearing my pants up higher than I normally would...my surgeon said "well, now you have a good reason to go and buy a lot of new pants...!"  haha, sure buddy.  eyes
 
Erin :)

summerstorm
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Date Joined Aug 2006
Total Posts : 6571
   Posted 6/15/2008 9:37 PM (GMT -6)   
well something that helps me for my clothes is to tape the bottom of the bag to your stomach. And also i take two pieces of tape, and place them in sort of a v shape below the stoma taping them to my stomach, it keeps it from moving, even though my pants may sit on my stoma. Works great!

praying4healing
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Date Joined Dec 2007
Total Posts : 739
   Posted 6/16/2008 7:15 PM (GMT -6)   
aha i found it! i thought i lost this post lol Erin thanx for the info! but if ur ostomy is only a month old by next month u should b fine in going back to ur old pants. are ur regular pants just uncomfortable b/c its still tender, or are u just afraid of letting them sit on ur stoma? it has no nerve endings so once ur healed it wont hurt, no matter where ur stoma is, u usually end up pushing the output around to make it a little more comfortable. I dont know if my stoma is high or not, but i know i still wear my low rise jeans, sometimes they come below, other times above. I just dont like to wear them too tight because i get paranoid about leaks or bursts from gas or something
 
*edit* errin do u use the locking coloplast system or the adhesive coupling one? i'm looking on the website and its time for me to order supplies, i have more than enough of my regular supplies....im having trouble navigating this website tho


25 y/o female- crohns disease since 14
Ileostomy pending-very worried
Tried asacol,pentasa,prednisone,remicade,6mp,azasan, no avail
Seatons placed
Worst year ever!

"For God has not given us the spirit of fear....."
Where does mine come from?!
 Temp Ileostomy performed 1/29/08
Still Adusting
 Healingwell.com has been my Godsend...Thank you

Post Edited (praying4healing) : 6/16/2008 7:45:13 PM (GMT-6)


Equestrian Mom
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Date Joined Mar 2008
Total Posts : 3115
   Posted 6/17/2008 12:33 PM (GMT -6)   
P4H-I have just changed my system to the Hollister New Image Lock n Roll...they have a newly formulated filter, which is why I went with it. I have been able to sleep, swim, shower with it and it continues to work. Best part is that you don't have to put a sticker over the filter...it just works! The only time I may get a little air trapped is when sleeping--it depends on what I ate for dinner--but once I empty it in the am, it continues to work.

The wafer is pretty forgiving too. My stomach is pretty uneven from all my surgeries and I haven't had any problems with it. I do use the Eakin seal with it.

I know filters are a funny thing, and I really wasn't a fan of them when they first came out, but WOW this system is easy to change and use. Good Luck on your search!

lacey55
Regular Member


Date Joined Jun 2008
Total Posts : 29
   Posted 6/17/2008 12:48 PM (GMT -6)   
Is it me or are these things crazy expensive as well? I keep having leaking problems and have to try new stuff....last order was almost $300 for 12 bags and 10 wafers. And when you are throwing them out every few days due to leakage......

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 6/17/2008 5:43 PM (GMT -6)   
wow that's a lot more than mine are. Where are you leakign at?

lacey55
Regular Member


Date Joined Jun 2008
Total Posts : 29
   Posted 6/17/2008 8:43 PM (GMT -6)   
In two days, I've had to change twice. Leaking is always at the wafer....have tried many products and the moldable one from convatec seemed to work but is now leaking as well. VERY frustrating!!
Do you have leakage issues as well?

chili123
Regular Member


Date Joined Jan 2007
Total Posts : 300
   Posted 6/17/2008 8:52 PM (GMT -6)   
I have been doing the hollister lock and roll and have found that I really like the 2-piece so I can let the "air" out easy when it starts to blow up. I find it to be flexible on my stomach and easy with my clothes. I do their rings and had a horrible leak with the eakin seal personally so I will never use that brand again. I seem to get about 5 days use out of hollister and swim and shower etc. Like I said, I really like the 2-piece to let the air out. I hate how my bag blows up and I am determined to keep it disguised.
Pancolitis - July 2006
Surgery - Temporary ilestomy on 2.25.08 at Cleveland Clinic. Next surgery in 6 months
Medications:  Predisone - 5mg (and tapering to zero)
Supplements:  multi-vit, calcium
Reason for surgery: Steriod dependent and allergic reactions to imuran and 6mp. Elected not to try remicade.


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 6/17/2008 8:56 PM (GMT -6)   
lacey, are you still using the barrier film stuff, it's that stuff that is in the packets that you rub on your skin first. that always shortened my wear time to like a day. and had i tried any longer i am sure i would have leaked. If you are standign puttign the system on, lie down, and if you are lying down, then try standing up. Also make sure that you are not cutting the hole for your stoma too big, i made that mistake a few times. Another thing you can do is after you put the wafer and bag on, take your hair dryer and use it on the wafer, i hold it on there for probably two or three minutes, and sort of press down on it while i am doing that. I hope that made sense!

lacey55
Regular Member


Date Joined Jun 2008
Total Posts : 29
   Posted 6/17/2008 9:05 PM (GMT -6)   
Omigosh yes...the bloated bag! It can get very scary!! I have the two piece.....but the convatec one. I had one piece coming out of the hospital and of course it leaked the night I got home. Was very scary trying to change it with the HUGE incision right beside it.....and had just gotten the staples out so pulling was scary. I would be THRILLED to get five days wear!!
I am using the barrier film as my skin had become quite raw. It is better now...should I stop using it? Thought it made removal soooo much better and less painful. Will definitely try the dryer trick, thanks! You all might save me a ton of money!!

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 6/17/2008 10:00 PM (GMT -6)   
if your skin is better then there is no reason to use that. Also, are you using paste or anything? if not try some paste or seals, that helps alot too, what that does is fill in the uneven spots in your tummy. If you take the bag off right out the shower and sort of pull down and away from your stomach, standing up, it doesn't hurt nearly as bad.

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 6/18/2008 1:38 AM (GMT -6)   
Little E is right, I use the Coloplast Assura Extended Wear wafer with an Eakin Seal underneath and easily get 7 days wear from it. It's a two piece system, so you can snap on different size pouches. They carry a mini that I love for swimming and intimate times. It's so nice and small.

The wafer has a built in skin barrier, so I do not have to use any skin prep. I've tried it, though, just out of curiosity, but the wafer would not stick to my skin, so I gave up on it.

This wafer is so waterproof that I can swim in the pool all day, and still get a week's wear time!

I highly recommend adhesive remover wipes. They make the wafer slide right off. :-)

Cecilia
Dx'd Crohn's in '99 at 28. Proctocolectomy and ileostomy in '06.
Disease-free, medicine-free, and very thankful to be healthy again :)


lacey55
Regular Member


Date Joined Jun 2008
Total Posts : 29
   Posted 6/18/2008 9:57 AM (GMT -6)   
Thank you so much! I will try that. I have been in touch with convatec and they often send free samples...makes it easier to spend a lot when you've tried the product and liked it. Am having stoma pain though...is that normal?

praying4healing
Veteran Member


Date Joined Dec 2007
Total Posts : 739
   Posted 6/18/2008 3:16 PM (GMT -6)   
Thanx guys,with the coloplast assura, which one do u use? The coupling adhesive 2 piece? Or the one that looks like the flange has some sort of plastic ring ?I don't know if that's snap on or what. Their website doesn't seem as user friendly as convatecs, I can't really tell what products I'm looking at, and the descriptions aren't very detailed at all.

Lacey, how far out of surgery are u? Ur saying stoma "pain". Is it really pain or just an odd uncomfortable feeling? The odd uncomfortable feeling is normal right after surgery, but I'm not sure about feeling actual pain on the stoma. It doesn't have nerve endings, but u can feel pressure. If it actually hurts and ur sure its not ur actual incision site thats hurting u may wanna bring it up 2 ur surgeon. Oh and the allkare adhesive remover wipes are great.

Summer I'm confused about the taping of the bag, if u tape the bottom how do u empty? And if u take the top how do u let the air out?
25 y/o female- crohns disease since 14
Ileostomy pending-very worried
Tried asacol,pentasa,prednisone,remicade,6mp,azasan, no avail
Seatons placed
Worst year ever!

"For God has not given us the spirit of fear....."
Where does mine come from?!
 Temp Ileostomy performed 1/29/08
Still Adusting
 Healingwell.com has been my Godsend...Thank you


LittleE
Regular Member


Date Joined Mar 2008
Total Posts : 137
   Posted 6/18/2008 5:41 PM (GMT -6)   

praying,

Sorry for the delayed response!  :)

I am not sure what they call mine, but it IS a snap-on 2-piece system.  The flange does have a plastic ring on it that snaps to the bag, like tupperware almost.

The product numbers for the items I use are:

flange:2832 (assura extended wear)

bag (the normal size): 13925

mini-bag: 13965

stoma cap: 2802

Hope this helps!  I really like the system...the flange I listed works with both bags and the stoma caps also...

Erin :-) :-)


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 6/18/2008 6:09 PM (GMT -6)   
i dont' have to burp my bag hardly ever anymore, so if get gas in it then i just empty the bag from the bottom.
What i meant about taping the bottom is kind of hard to explain but i will try. On the lock and roll system there is the velcro part and then there is the plastic part. Well a few times i have hadlittle tears in the plastic parts. So in order to keep that from being a problem, and just sort of a security blanket type thing to me, when the bag is closed, there is plastic on the outside, so i just put a piece of tape on that, i don't tape the bag closed. That also makes the bag easier to get closed good.

praying4healing
Veteran Member


Date Joined Dec 2007
Total Posts : 739
   Posted 6/18/2008 8:22 PM (GMT -6)   
thanx for clearing that up summer lol, now it makes more sense to me

Thanks so much Erin i want to order tomorrow, so ur saying these bags are interchangeable with that flange? i was looking up the info u gave me on edgepark, and it seems that the stoma caps have the "locking" feature. this works with the snap on flange as well?
25 y/o female- crohns disease since 14
Ileostomy pending-very worried
Tried asacol,pentasa,prednisone,remicade,6mp,azasan, no avail
Seatons placed
Worst year ever!

"For God has not given us the spirit of fear....."
Where does mine come from?!
 Temp Ileostomy performed 1/29/08
Still Adusting
 Healingwell.com has been my Godsend...Thank you


LittleE
Regular Member


Date Joined Mar 2008
Total Posts : 137
   Posted 6/19/2008 7:48 AM (GMT -6)   

praying,

The bags and stoma cap I listed are all interchangeable with the flange I listed.  When you call Coloplast (if you want to get free samples of these items), you can always ask the sales rep if a certain flange works with a certain bag--they are trained in this stuff and will know if you are ordering 2 products that will not work together.

:) Erin


lacey55
Regular Member


Date Joined Jun 2008
Total Posts : 29
   Posted 6/19/2008 3:41 PM (GMT -6)   
praying....it is actual pain, but not acute. It makes it uncomfortable to wear anything with a waistband. Actually went out and bought some summer dresses. It also bleeds, but not much. I knew there were no nerve endings, and I think the pain is more from around the area of the stoma, not the stoma itself. My waistbands tend to be too big lately and maybe they are pulling it down.
Coloplast reps are absolutely wonderful and well trained to answer any questions. Love that they send free samples too!!
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