Share Facebook
Crohn's Disease Forum » Surgery » Stoma Subforum » Need paste or rings?


 
12-17-2012, 10:20 AM   #1
JennaRae
Forum Monitor
 
JennaRae's Avatar
 
Join Date: May 2012
Location: Keller, Texas
Need paste or rings?

So I've realized I need convex wafers now I'm trying to figure out if the rings or paste are better. I get leaks right around my stoma, mainly at the bottom. I've tried the eakin cohesive but my poo seems to disintegrate them in a day. And the paste I tried, convatec, burns really bad.
Any advice or personal experiences would be great!
__________________
DX with Crohn's in 2004
3 resections w/ appendectomy
Failed Remi, Humira and Cimzia
Tried Asacol, Pentasa, Imuran and all the other usual suspects!
Gallbladder removed
Total proctocolectomy w/ perm ileostomy 10/2012
12-17-2012, 10:50 AM   #2
Absentminded
Forum Monitor
 
Absentminded's Avatar
 
Join Date: Nov 2009
Location: Bristol, United Kingdom
I don't have any advice but I am having the same problem, so would be interested to see what people suggest!
I've found the the eakin seals disintergrate too.
Hugs, I know it's really frustrating!
__________________
Lucinda x

Diagnosed: July 2009

Resection and removal of Enterocutaneous Fistula: Jan 2014
Pelvic infection Drainage: April 2013
Ileostomy reversal: February 2013
Ileocecal resection and temp. ileostomy (Say hello to Norman!): Nov 2012
Current Medication: NONE!

Past medications: Humira, Infliximab, Azapthioprine, Asacol, Budesonide, Prednisolone, Flagyl, Cipro, Cholestyramine (Questran), Fortisips.
12-17-2012, 11:06 AM   #3
2thFairy
Senior Member
 
2thFairy's Avatar
 
Join Date: Sep 2010
Location: Dallas, Texas

My Support Groups:
I absolutely adore Coloplast Brava strip paste. No sting, easily modable to your shape, and it has stuff in it that helps wounds heal.

I hate paste...it does sting! And I had a weird skin reaction to it.
__________________
Ulcerative colitis

Total colectomy with ileostomy featuring Sideshow Bob since January 2012

"The colon seems an unlikely candidate for dramatic effect, but now and then it serves that purpose well." The Associated Press Guide to Punctuation
12-17-2012, 11:13 AM   #4
JennaRae
Forum Monitor
 
JennaRae's Avatar
 
Join Date: May 2012
Location: Keller, Texas
Absentminded thanks! I feel for you and hugs to you too!
Hey 2thFairy! I'm hoping to get some of those strips with the samples I requested. Yes paste sucks!
12-17-2012, 11:17 AM   #5
2thFairy
Senior Member
 
2thFairy's Avatar
 
Join Date: Sep 2010
Location: Dallas, Texas

My Support Groups:
With my ileo, I use half of a strip of paste with each bag change. You squish it flat and then mold it directly around your stoma before you put the new bag on.

She's probably too far from you, but if you are in need of a stoma nurse, Linda Chartier, RN, ET, is who I go to at Texas Colon & Rectal Specialists in Las Colinas. (972) 759-2040
12-17-2012, 11:30 AM   #6
JennaRae
Forum Monitor
 
JennaRae's Avatar
 
Join Date: May 2012
Location: Keller, Texas
Thanks! Yeah I don't know why I wasn't given a stoma nurse to call after my surgery. They were just like, ok see ya later!
12-17-2012, 11:37 AM   #7
2thFairy
Senior Member
 
2thFairy's Avatar
 
Join Date: Sep 2010
Location: Dallas, Texas

My Support Groups:
I was fortunate enought that she is in the same office as my surgeon. However, I was sent out of the hospital with no information at all about how to get my supplies. It's so frustrating that the overall coordination for new stoma patients is just nonexistent!
12-17-2012, 12:06 PM   #8
Absentminded
Forum Monitor
 
Absentminded's Avatar
 
Join Date: Nov 2009
Location: Bristol, United Kingdom
I do have a stoma nurse, and while she is very nice, she's not been massively helpful. I was also sent home with not much information and also really basic supplies. If it wasn't for this forum and a couple of friends I have from the Crohn's group I go to I'd have been completely and utterly lost!
12-17-2012, 12:07 PM   #9
Hobbes650
Forum Monitor
 
Hobbes650's Avatar
 
Join Date: Jun 2012
Location: Burlingame, California
I use the large Eakin seals- the small ones don't do much for me.
__________________
Hobbes650

Ulcerative Colitis 1986
Complete Proctocolectomy with j-pouch 1987
Permanent Ileostomy 1991
Crohn's Disease (just inside stoma) 2012
No meds post 1987 surgery to 2012

Current Meds:
Pentasa 3000mg daily
Imuran (Azathioprine) 100mg daily
Folic Acid supplement: 1mg daily
Mulit Vitamin/Fish Oil or Flaxseed Oil daily
Tumeric and Boswelia occasionally.
12-17-2012, 12:25 PM   #10
JennaRae
Forum Monitor
 
JennaRae's Avatar
 
Join Date: May 2012
Location: Keller, Texas
I know! If it wasn't for this forum I'd be completely lost as well!

Thanks Hobbes! I tried the thin ones j haven't tried the big ones yet.
12-17-2012, 12:33 PM   #11
Hobbes650
Forum Monitor
 
Hobbes650's Avatar
 
Join Date: Jun 2012
Location: Burlingame, California
I know! If it wasn't for this forum I'd be completely lost as well!

Thanks Hobbes! I tried the thin ones j haven't tried the big ones yet.

The smal ones seem fine if you're looking to add some convexity to the pouch- you just put the small rings over the bag's opening (one piece bag, that is) and viola, instant convexity. But the small ones are not very good at protecting the skin. Eakin does a poor job of explaining this difference.

Sometims the large ones don't seem to stick to the skin well and you'll notice some sides crumple up, so to speak. That's perfectly fine. When I notice that happening I still go ahead and put the pouch over it as normal, but then use some 2 inch paper tape around the edges. Seems to work great.

Last edited by Hobbes650; 12-18-2012 at 01:11 PM.
12-17-2012, 12:42 PM   #12
Hobbes650
Forum Monitor
 
Hobbes650's Avatar
 
Join Date: Jun 2012
Location: Burlingame, California
Thanks! Yeah I don't know why I wasn't given a stoma nurse to call after my surgery. They were just like, ok see ya later!


I never had a "stoma nurse", but the hospital had an rn that specialized in wound ostomy continence. As good as she was, I found other resources that were even better through the product manufacturer. Specifically, companies like Convatec and Hollister have specialists that you can talk to about your ostomy needs and they will recommend solutions. It was through one of them that I learned I needed a pouch with convexity, for example. The nurses have patients in the hospital to care for and may not have the time for us after we leave, so calling on these specialists should help.

Last edited by Hobbes650; 12-17-2012 at 04:00 PM.
12-17-2012, 12:54 PM   #13
2thFairy
Senior Member
 
2thFairy's Avatar
 
Join Date: Sep 2010
Location: Dallas, Texas

My Support Groups:
My stoma nurse is located in the surgeon's office and her sole purpose is just to care for patients after they are home and out of the hospital.
12-17-2012, 01:35 PM   #14
JennaRae
Forum Monitor
 
JennaRae's Avatar
 
Join Date: May 2012
Location: Keller, Texas
I never knew about the difference in the small and large seals. Thanks for the info. I usually ask here first then if nothin works ill call the nurses at the suppliers. I find that everyone here has such good advice and tips because they live it everyday.
12-17-2012, 03:27 PM   #15
Terriernut
Moderator
 
Terriernut's Avatar
 
Join Date: Dec 2010
Location: United Kingdom

My Support Groups:
I hope the convex works so well for you that you dont need anything else. But, really with the rings it is trial and error. I use the coloplast thin ones. And even then, it's giving me trouble right now. So experiment away! And Hobbes is right about the folks at the manufacturers. They are VERY helpful. So helpful they will send you to a competitor if they dont have the product you need. And quite a few of them are ostomates themselves. So thank goodness, they really DO know what they are talking about.

I will be experimenting myself with things over the xmas holiday period. (only 4 days worth...dang)
__________________
Misty
DX Crohns Feb 2011, symtoms 1997, 2009 and then WHAM! Emergency surgery for perforated sigmoid, fistula through fallopian tube, septic and near dead: Colostomy-Stan was born 22/12/10. Another parastomal hernia, his name is Ollie and he is MONSTER size!
4gm Pentasa
6MP 50mg
12-17-2012, 06:13 PM   #16
hopeful
Senior Member
 
Join Date: Nov 2010

My Support Groups:
I used Eakin and found them difficult to handle. I switched to using Salts from the UK and they are great. No need to warm them and they handle very well. They last me about 3 days. They ship worldwide.
12-17-2012, 06:38 PM   #17
JennaRae
Forum Monitor
 
JennaRae's Avatar
 
Join Date: May 2012
Location: Keller, Texas
Thank you!
12-17-2012, 06:43 PM   #18
JennaRae
Forum Monitor
 
JennaRae's Avatar
 
Join Date: May 2012
Location: Keller, Texas
I can't seem to find the number to hollister to get some help
12-17-2012, 06:48 PM   #19
2thFairy
Senior Member
 
2thFairy's Avatar
 
Join Date: Sep 2010
Location: Dallas, Texas

My Support Groups:
I found this posted by katiesue1506 in the stoma supplies contact numbers sticky in this subforum.


Hollister:
Telephone: 1.888.740.8999

In the United States, the Hollister Consumer Programs Team is available from 8:00 am - 5:00 pm (Central Standard Time) Monday through Friday.

Mailing Address:
Hollister Incorporated
Consumer Programs Team
2000 Hollister Drive
Libertyville, Illinois 60048

http://www.hollister.com/us/
12-17-2012, 11:58 PM   #20
Higbonzo
 
Higbonzo's Avatar
 
Join Date: Dec 2012
Location: St. Augustine
So I've realized I need convex wafers now I'm trying to figure out if the rings or paste are better. I get leaks right around my stoma, mainly at the bottom. I've tried the eakin cohesive but my poo seems to disintegrate them in a day. And the paste I tried, convatec, burns really bad.
Any advice or personal experiences would be great!
I use the Eaken Seal first, then put a good amount of paste around the stoma and use a flexible wafer. It last 3 to 5 days depending on how active I am. It has been cold, ok cooler (I live in Florida), and I have not been feeling so hot, so I am getting 5 days on average at the moment from my wafers.

Later...
12-18-2012, 12:17 AM   #21
Higbonzo
 
Higbonzo's Avatar
 
Join Date: Dec 2012
Location: St. Augustine
Have you all check "you tube" for stoma info? There are plenty of examples of putting them on and some neet gadgets available. There are other videos out there as well.

Something I do different is I kneel and empty my bag. I have found this help me to keep the waste from splashing because I can drop it right on the edge of the toilot and water. I have to emptiy mine a lot and it just splashes all over if I empty while I am sitting on the toilot. But, that is just me.

I watch some of the vids. And quite honestly, I can't just stand there and take my time putting on my wafer because it is almost always putting out something. I really have to work hard at timing when I change my wafer.

Later....
12-18-2012, 12:24 AM   #22
2thFairy
Senior Member
 
2thFairy's Avatar
 
Join Date: Sep 2010
Location: Dallas, Texas

My Support Groups:
I watched a lot of the YouTube videos before surgery. It really helped. I kneel to empty too, though I am trying to get more comfortable with the Sumo wrestler stand/squat to do out in public.

Like you, I have to change mine quick. Even after not eating for 6 hours, it will go off unexpectedly. I use guaze to give a little bit of extra time between steps.
12-18-2012, 12:43 AM   #23
Higbonzo
 
Higbonzo's Avatar
 
Join Date: Dec 2012
Location: St. Augustine
I watched a lot of the YouTube videos before surgery. It really helped. I kneel to empty too, though I am trying to get more comfortable with the Sumo wrestler stand/squat to do out in public.

Like you, I have to change mine quick. Even after not eating for 6 hours, it will go off unexpectedly. I use guaze to give a little bit of extra time between steps.
To bad you can't just plug it I have tried to plug it with my finger, it is like have a blockage, not recomended.

I just have everything ready to go, and try not to wig out if I leaks out. I have totally blasted the toliot before. It is just amazing the force that your intestines can shot shit out of the ileom. No wonder it hurts so bad when you get block.

Later....
12-18-2012, 01:48 AM   #24
annawato
Moderator
 
annawato's Avatar
 
Join Date: Apr 2012
Location: sydney, New South Wales, Australia

My Support Groups:
I have a new ileostomy (second time around) which is putting out 2 litres a day even with 16 loperamide a day so there is never a time its not squirting out. And of course everything leaks under the base plate causing skin problems and the last two nights its come off in bed. My problem is that this stoma os oval shaped with one side wide than the other. I've tried stoma paste, no luck and was wondering if the coloplast brava mouldable ring would mould around a very odd shaped stoma or alternatively has anyone tried the convatec mouldable skin barriers (with turtlenecks they advertise!) Last time I used a similar system to this but I had a nice round stoma then. Any ideas, suggestions?
And sorry to Jennarae for hijacking her thread but thought since we're having similar problems I'd add on here......
__________________
Anna

you name it, i've tried and failed it! currently on- waiting to see whats new and reducing pred
temp. ileostomy reversed feb 2011, new ileostomy, nov 2012
4 resections plus removal of adhesions etc, recurrent intestinal abscesses
lyme disease, depression, sacroileitis, chronic pain and......Crohn's..........
12-18-2012, 01:53 AM   #25
annawato
Moderator
 
annawato's Avatar
 
Join Date: Apr 2012
Location: sydney, New South Wales, Australia

My Support Groups:
P.s, I've found in the past that lots of these pastes and seals prevent the bag from sticking properly, I use a convex bag, is this just my imagination or have other people found this? And is there a way around it?
Now I'm going to watch you-tube and pick up some handy hints
12-18-2012, 02:45 AM   #26
Terriernut
Moderator
 
Terriernut's Avatar
 
Join Date: Dec 2010
Location: United Kingdom

My Support Groups:
Yes Anna, I'm having the problem with the rings right now myself. They SHOULD be helping, but they are causing me leaks. So I'm off to try all the samples over my 4 days off at xmas.

My issue is Ollie the hernia. I dont know that I'll get a fix for what ails me!
12-18-2012, 06:17 AM   #27
2thFairy
Senior Member
 
2thFairy's Avatar
 
Join Date: Sep 2010
Location: Dallas, Texas

My Support Groups:
Mine has shrunk down to a more rounded shape now, but was a weird oval shape with almost a lip on one side, which is why I started using the Coloplast Brava strip paste in the first place. You squish the strip flat to however thick you need it and then mold it around the stoma itself, then put the bag on. It may not be what you need, but it is definitely worth trying.

Also, another thing with the Brava strip paste is that when it gets wet, it swells up around your stoma to create a better seal rather than eating up the seal even faster like paste does.
12-18-2012, 06:22 AM   #28
annawato
Moderator
 
annawato's Avatar
 
Join Date: Apr 2012
Location: sydney, New South Wales, Australia

My Support Groups:
That sounds fantastic particularly the swelling up bit. Kinda makes sense to me. I'll give them a call tomorrow and get some samples sent out. And its also nice to hear my stoma may settle down to a more manageable shape. I guess it is early days. Just fed up at the moment with the stinging and leaks. Last time around I got it all sorted eventually so I'll just have to keep that in mind.
12-18-2012, 10:42 AM   #29
JennaRae
Forum Monitor
 
JennaRae's Avatar
 
Join Date: May 2012
Location: Keller, Texas
Annawato no problem!!! I feel ya! I just recently tried the convatec moldables but am really allergic to the tape. The moldable part was great though I liked it. It does what it says and molds around your stoma and then turtlenecks around it.

To add onto what someone else said, when I empty I sit sideways at the very front of the toilet, to where my stoma and bag are right over the opening. Then I throw in some TP, lean a bit over and it goes right in with no splashing.

I am so tired of leaks. I called hollister this morning and they're sending me samples of their convex one piece, two piece and convex barrier rings. Hopefully they work. I have no backup supplies so I am wearing the ones I'm allergic to AND I have a leak.
12-18-2012, 10:43 AM   #30
JennaRae
Forum Monitor
 
JennaRae's Avatar
 
Join Date: May 2012
Location: Keller, Texas
Oh and I too have used YouTube for help!!! Love it!
Reply

Crohn's Disease Forum » Surgery » Stoma Subforum » Need paste or rings?
Thread Tools


All times are GMT -5. The time now is 07:34 PM.
Copyright 2006-2017 Crohnsforum.com