How do you decide what appliance/pouch to get? I'm overwhelmed!

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 3/23/2010 4:04 PM (GMT -6)   
Hi everyone!
I'm just going through this catalog of ostomy supplies they gave me at the hospital and trying to decide what to order, and I'm just a little overwhelmed! I don't know how to figure out what I'll want. I know I don't want a clear one like the one they gave me at the hospital...gross to be able to see my poop, and it's so crackly and loud!
 
What do you guys use/how did you find what was right for you? Right now I have a two-piece one, though I don't understand why that is more desirable than a one-piece.
 
Also, how many people have like one of those belt things to wear during physical activity? I'm thinking of getting a few, but don't want to spend millions on a crappy one.
 
Any suggestions would be great! Thanks, guys :) 
Stephanie, 28 years old
Diagnosed with Crohn's Colitis March 2000
Possible diagnosis of IBS-D
 
Tried Meds: Asacol, Remicade, 6mp, Humira, Xifaxan, Apriso, Imuran, Rowasa Enemas, Colocort Enemas.
 
Tried Probiotics: Align (with no change except bloating) and VSL #3 DS (AWFUL diarrhea).
 
Currently on: 40mg Prednisone (Been on it since June '09...get me off!!), Psyllium Seed Powder, Prenatal Vitamin, Vitamin B 12 Complex, Vitamin D, Calcium, Vesicare (for urinary retention). 


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 3/23/2010 5:07 PM (GMT -6)   
Stephanie~it's a matter of finding what works best for your body...the opaque are much nicer and I prefer the two piece so that I can center the wafer with my stoma. A one piece w/opaque pouch would make that hard to do! And...if there is a problem with a pouch you can easily change it out without having to change everything.

Personally, I prefer a pouch with a filter and I have found that the Hollister brand filter works the best...but for me the wafers don't sad so I use the Coloplast brand (which flchurchlady has used since day one) and I've just been able to start using. My stomach's unevenness makes things a little tricky for me even after 10 years!!

My suggestion is to request samples from the main manufacturers (there's a great list to work from at www.uoaa.org) which you can do on line or call them directly...you'll just need to let them know the size(you'll probably want cut to fit until your stoma is done shrinking) and type (convexity or none) and type/size of pouch. You'll quickly find what you like best and then can work from there.

Good luck in your search!
Crohn’s dx 1989
some terrible years before my
Proctocolectomy in 2008


80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 3/23/2010 6:29 PM (GMT -6)   
What do you mean by convexivity? Like does your stoma stick out a lot? Mine does and I don't like it! Maybe it'll shrink a little but probably not much :( I didn't realized they made different things for whether it stuck out...interesting.

Thanks for all the tips OHIO! All of that really helped already :)
Stephanie, 28 years old
Diagnosed with Crohn's Colitis March 2000
Possible diagnosis of IBS-D
 
Tried Meds: Asacol, Remicade, 6mp, Humira, Xifaxan, Apriso, Imuran, Rowasa Enemas, Colocort Enemas.
 
Tried Probiotics: Align (with no change except bloating) and VSL #3 DS (AWFUL diarrhea).
 
Currently on: 40mg Prednisone (Been on it since June '09...get me off!!), Psyllium Seed Powder, Prenatal Vitamin, Vitamin B 12 Complex, Vitamin D, Calcium, Vesicare (for urinary retention). 


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 3/23/2010 6:34 PM (GMT -6)   
its good that it sticks out, that will help the output go in the bag easier. But it will shrink over time, mostly in diameter.
As for how to choose which one to use, its personal.
My ET suggested the hollister new image two piece and thats what i am still using. I like it.
I dont want the one piece, because you cant change just the pouch, and it would be hard to see if you had a good fit.
If you find something that works, stick with it!
You dont need all the barrier wipes and such though, its best to use as little as possible.
I like the paste, but some people use the eakin seals.
good luck!
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007! 
-I have gone to find myself, if i get back before i return, keep me here-


ohcountrybear
Regular Member


Date Joined Mar 2009
Total Posts : 192
   Posted 3/23/2010 6:43 PM (GMT -6)   
I use the Hollister two piece new image, but now with this new ostomy being so high, this pouch isnt as comfortable. The hollister is a harder plastic so when I sit it doesnt seem to bend well. Now my pouch is amost completely above my waist. Does anyone have any suggestions on a brand that might have a softer plastic that may bend a little easier?

Shaz032
Forum Moderator


Date Joined Feb 2003
Total Posts : 1246
   Posted 3/24/2010 1:10 AM (GMT -6)   
As OHIO76 said, contact ALL the manufacturers and get as many free samples as you can to try out. No one brand/type suits everyone. Your Stoma Nurse should be able to suggest something that you can use in the meantime until you settle on what YOU want.

Some people can't get by without wipes, skin barriers, paste, convexity etc while others go by the 'less is more' rule and use nothing but their wafer/bag. In time you will work out what works best for you.

THERE IS NO ONE APPLIANCE/BRAND THAT WORKS FOR EVERYONE! Just because someone loves one brand and recommends it, does NOT mean it will work the same way for you. It really depends on what your skin likes/dislikes. Just as people's food tolerances vary so do skin tolerances. It's all a matter of experimentation in those first few weeks.

I've never used or needed a belt but there are those who swear by them. Maybe just order one for now and see how you like it.

Also, some people (like me) love one piece appliances, others love two piece appliances. It's up to you which one you prefer.

Basically, in ostomy care, there is no right or wrong, it's just what works best for you.

Good luck.

PS Bland foods are recommended for the first 6 - 8 weeks while you're healing. After that you should start introducting new foods into your diet - one at a time in small amounts so if it causes you problems you can identify the culprit. As in appliances tolerances vary, don't let anyone tell you NOT to eat a certain food cos it disagrees with them - you may be able to eat it without a problem. Furthermore, if you do find a food that disagrees with you, don't automatically think you can't eat it ever again. Try it again a few months down the track. You may be surprised :)
Ileostomy for 33 years due to UC

Moderator of the Ostomy and Psoriasis Forums

_______________________________________________

I'm not a complete idiot - some parts of me are missing!


Allison77
Regular Member


Date Joined Feb 2005
Total Posts : 421
   Posted 3/24/2010 6:16 PM (GMT -6)   
Shaz032 is 100% right!!!!!!!
Keep trying different things and see what works for you Stephanie! I use barrier wipes every time I change Oscar's clothes, some people can't. I use paste freely, some people don't like paste. I need a convexity appliance because Oscar is shy on his right side, some people are able to use a flat skin barrier. I need to use an eakin ring, some people don't use anything. Too each their own. Remember, your new friend is going to be with you forever, treat him/her and YOURSELF right and your golden.

-Allie
RX Crohn's 1999, over 30 surgeries, 3 strokes, permanent colostomy and rectum removal.
 
"The most unfortunate thing that happens to a person who fears failure is that he limits himself by becoming afraid to try anything new."


80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 3/24/2010 8:04 PM (GMT -6)   
I know, you guys are right about how things are different for everyone...I am just overwhelmed becuase things like "convexivity appliance" and "eakin ring" are totally foreign words to me. How do I know if I want to try it if I don't even know what it is?! Ahh!
 
I have a sample kit coming from Hollister in the mail...I'm excited to try some of them on Zoe and see how they work. In the meantime I like hearing from you guys about what is good for you and why. It at least makes me familiar with what the products are.
Stephanie, 28 years old
Diagnosed with Crohn's Colitis March 2000
Possible diagnosis of IBS-D
Total Proctocolectomy and Permanent Ileostomy 3/18/10!
 
Tried: Asacol, Remicade, 6mp, Humira, Xifaxan, Apriso, Imuran, Rowasa Enemas, Colocort Enemas, Psyllium Seed Powder...
 
Tried Probiotics: Align (with no change except bloating) and VSL #3 DS (AWFUL diarrhea).
 
Currently on: 25mg Prednisone, Prenatal Vitamin, Vitamin B 12 Complex, Vitamin D, Calcium, Vesicare (for urinary retention). 


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 3/24/2010 9:40 PM (GMT -6)   
i know its hard, honestly i still dont know what convexity means!
And eakin seals confuse me to no end!
One thing you do need to order for sure are sure seals, they are awesome! you put them over the bandaid like part ofyour wafer,and they keep it from getting wet in the shower.
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007! 
-I have gone to find myself, if i get back before i return, keep me here-


Allison77
Regular Member


Date Joined Feb 2005
Total Posts : 421
   Posted 3/24/2010 9:44 PM (GMT -6)   
Convexity = half saucer type skin barrier. It's not flat, but looks like a half saucer, helps those of us who's stoma's don't protrude very much.

-Allie
RX Crohn's 1999, over 30 surgeries, 3 strokes, permanent colostomy and rectum removal.
 
"The most unfortunate thing that happens to a person who fears failure is that he limits himself by becoming afraid to try anything new."


Allison77
Regular Member


Date Joined Feb 2005
Total Posts : 421
   Posted 3/24/2010 9:49 PM (GMT -6)   
Speaking of Sure Seals....anyone need some? I bought the wrong size/shape, ripped into the package and now the store won't take them back. I asked my et nurse if she would like them, but she dosen't use them on patients.....so....I spent $30.00 on these stupid seals that are sitting in my drawer doing no good for anyone. They are the round kind, PN:RS01. If you'd like them, let me know and i'll mail them out asap...no charge. Silly having them here doing nothing.

-Allie
RX Crohn's 1999, over 30 surgeries, 3 strokes, permanent colostomy and rectum removal.
 
"The most unfortunate thing that happens to a person who fears failure is that he limits himself by becoming afraid to try anything new."


80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 3/25/2010 7:27 AM (GMT -6)   
Allie, I'll take them so I can try them and see whether I want them! do you just put them on when you take a shower and then take them off after the shower and leave them on for extra protection?

Does anyone have sensitive skin? I do and I'm already itching a little from the adhesive on the wafer. What products are good to combat that?
Stephanie, 28 years old
Diagnosed with Crohn's Colitis March 2000
Possible diagnosis of IBS-D
Total Proctocolectomy and Permanent Ileostomy 3/18/10!
 
Tried: Asacol, Remicade, 6mp, Humira, Xifaxan, Apriso, Imuran, Rowasa Enemas, Colocort Enemas, Psyllium Seed Powder...
 
Tried Probiotics: Align (with no change except bloating) and VSL #3 DS (AWFUL diarrhea).
 
Currently on: 25mg Prednisone, Prenatal Vitamin, Vitamin B 12 Complex, Vitamin D, Calcium, Vesicare (for urinary retention). 


Allison77
Regular Member


Date Joined Feb 2005
Total Posts : 421
   Posted 3/25/2010 9:45 AM (GMT -6)   
Stephanie,
E-mail me your info, i'll pop the Sure Seals in the mail tonight! You wear them OVER your skin barrier to prevent water getting onto the fabric like material. More water = less wear time. I've picked some up because people here (Summerstorm) had highly recomended them and Im in the pool every other day and had found I was only getting 2 days wear time.
Hey, maybe I missed it somewhere...did you receive an ileo or a colo?? Whats happening with your bum? Just curious! LOL.

-Allie
RX Crohn's 1999, over 30 surgeries, 3 strokes, permanent colostomy and rectum removal.
 
"The most unfortunate thing that happens to a person who fears failure is that he limits himself by becoming afraid to try anything new."


Allison77
Regular Member


Date Joined Feb 2005
Total Posts : 421
   Posted 3/25/2010 9:47 AM (GMT -6)   
Nevermind...ileo....duh! I swear my red hair is artificial intelligence!

-Allie
RX Crohn's 1999, over 30 surgeries, 3 strokes, permanent colostomy and rectum removal.
 
"The most unfortunate thing that happens to a person who fears failure is that he limits himself by becoming afraid to try anything new."


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 3/25/2010 10:51 AM (GMT -6)   
i got the idea for them from Ohio! (dont wanna take credit, lol)
But yeah you wear them over the wafer and you leave them on the whole time.
The stuff they have sent you home with is kind of crappy (no pun intended :D) and i had some itchy with it too, but once i got the stuff i use now i didnt have that problem.
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007! 
-I have gone to find myself, if i get back before i return, keep me here-


Allison77
Regular Member


Date Joined Feb 2005
Total Posts : 421
   Posted 3/25/2010 12:56 PM (GMT -6)   
Thanks Ohio!!!!!!!!!!!!!!!! LOL
RX Crohn's 1999, over 30 surgeries, 3 strokes, permanent colostomy and rectum removal.
 
"The most unfortunate thing that happens to a person who fears failure is that he limits himself by becoming afraid to try anything new."

New Topic Post Reply Printable Version
Forum Information
Currently it is Monday, October 23, 2017 7:37 AM (GMT -6)
There are a total of 2,885,943 posts in 316,660 threads.
View Active Threads


Who's Online
This forum has 157762 registered members. Please welcome our newest member, Lupwarrior.
407 Guest(s), 18 Registered Member(s) are currently online.  Details
tiredredhead, Rspwed, Lapis_29, 0311, Dahlias, Jayhawk85, Hoagie, Depov, Starlight*, Uniform Charlie, WalkingbyFaith, gabybee, cr3ativegirl, ks1905, testuser1234, DebbieMH, Scooterbuglyme, jdiane


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2017 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer