Frustrating Frequent Leaks!! :(

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80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 8/24/2010 5:22 AM (GMT -6)   
Hi everyone,
I have been really frustrated the last few days--it's been leak city! I feel like I've been through SO MUCH this year, I just can't handle more. It always leaks around the same spot, and I'm wondering if I'll maybe need some convexivity?
 
I currently use: Hollister 2 piece with Adapt paste. One thing to note is I can't use a regular wafer because I have a skin allergy. I am also allergic to sure seals. I use a non-adhesive wafer from Hollister (made only of pectin). Normally I can get about 3-4 days of weartime with that, and now for the past week I've been leaking after about a day. I don't wash with soap, just water, and I don't use any creams or anything, except sometimes I use a tiny bit of Natural Care Gel from Bard. It doesn't seem to make any difference with the leaks whether I use the gel or not.
 
Does anyone have any suggestions? I need something NOW! I'm a teacher (dancing at Disney on the weekends) and can't leave my 5th graders to go change my whole appliance, and now that's all I worry about during school. :(
Stephanie, 28 years old
Diagnosed with Crohn's Colitis March 2000
Possible diagnosis of IBS-D
Total Proctocolectomy and Permanent Ileostomy 3/18/10! :)
Blockage/Ileo revision 6/8/10 :/
 
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 taking: Prenatal Vitamin, Vitamin B 12 Complex, Biotin, Vitamin D, Calcium, Flomax (for urinary retention). 

privey
Regular Member


Date Joined Oct 2009
Total Posts : 453
   Posted 8/24/2010 6:40 AM (GMT -6)   
Stephanie,
Do you have any sores or rough skin in the area that leaks? Do you use paste? Believe me I feel like the KS leak queen & those 2 things I'll check 1st. I use CONVATEC products and use a convex wafer;eakin seal;and paste maybe you'll need to trail for a bit. Good luck!
Cathy

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5968
   Posted 8/24/2010 6:50 AM (GMT -6)   
     Steph....I had problems with the Hollister bags too, so I switched to the one piece Coloplast with filter.  Their wafer sticks soooo much better.  I haven't had one leak on me yet.  The number is 15623 and the wafer is precut (my stoma is exactly one inch).
     I had a problem with itchy red irritation and my surgeon gave me a script for Nystop which works like a dream....no more irritation.  After I remove my old bag, I wash around the stoma with soap and water, dry it completely, use an adhesive remover just in case I have some adhesive stuck on the skin, wipe with a barrier wipe, make sure is completely dry, use the Nystop, blend in with tissue and then apply the Coloplast wafer and bag.
     The only thing which annoys me is that the filter gets poop in it after my first night and then it doesn't work as well.  They should invent something better.  But, even the Hollister with the filter bag does the same thing.  I change it on the third day but it is still on real well.
Ulcerative Proctitis since Sept of 1998. Hospitalized for eight days. Prednisone, Asacol, Rowasa enemas. Two year remission. Flare..switched from Asacol to Colazal. Two year remission. Started 6MP in 2002. Flared yearly from 2003 to May of 08. Hospitalized for ten days in May of 08. Flaring more often since. Off 6MP. Remicade failed. Humira failed. Total colectomy with perm. ileo .

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 8/24/2010 10:07 AM (GMT -6)   
i found hollister's paste is not so good, coloplast's or convatec's paste are better. and how about eaking seals - those are good. i had so many leaks lately and the wafer was falling off of me after 1-2 days so stoma nurse told me to use the adhesive spray, that thing is the best glue.
Hodaya
06/05/2007 - STARR procedure
colonic inertia w/pelvic floor dysfunction
08/16/2009 - total colectomy w/ileorectal anastomosis
07/08/2010 - loop ileostomy

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 8/24/2010 2:20 PM (GMT -6)   
I would suggest that you start with convexity since you have the allergy issue. Have you tried Coloplast? They have an extended wear wafer that doesn't have any tape/paper around it...just a thought.

Have you tested Adapt Rings or Eakin Seals? Maybe put a small piece against your skin and put a piece of tape over it...leave it on for 12-24 hours and see if you have any issues with them. Some people can use one of those two paste alternatives and extend their wear time.

Since it is always in the same spot, I'm guessing that the convexity will do the trick and that would be the easiest fix :-)

Good Luck and keep us posted!
Crohn’s dx 1989
some terrible years before my
temporary ileo in 2001
Proctocolectomy w/end ileo in 2008
...wish I knew then what I know NOW!

80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 8/24/2010 4:59 PM (GMT -6)   
Hi everyone,
To answer your questions:

I've never tried any other products, so I'm not sure if any of them would work. I contacted convatec to get some samples today, so I am hopeful about that. They are sending me some convex eakin seals as well as some convatec products. My skin is incredibly sensitive, so I am guessing that just about anything with adhesive on it would make me react, if not at first, probably within a few weeks. I have never heard of adhesive spray...how exactly do you use that? I have heard that the less you use on your skin before applying the wafer, the better.

Yes, I use paste, and no, my skin isn't rough or anything. It's just regular, with no real creases or anything. My stoma is a little less than 1 inch in diameter and sticks out about 3/4 inch.

Christine, what exactly is Nystop?

NASCARon, if you can help me, please do! I'd love any feedback or ideas you have. Thank you all so much.
Stephanie, 28 years old
Diagnosed with Crohn's Colitis March 2000
Possible diagnosis of IBS-D
Total Proctocolectomy and Permanent Ileostomy 3/18/10! :)
Blockage/Ileo revision 6/8/10 :/
 
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 taking: Prenatal Vitamin, Vitamin B 12 Complex, Biotin, Vitamin D, Calcium, Flomax (for urinary retention). 

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 8/24/2010 5:44 PM (GMT -6)   
apparently hollister is still having some quality issues, so that could be your 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-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 8/24/2010 6:00 PM (GMT -6)   
only hollister has the adhesive spray - that's what i've been told both by hollister's stoma nurse and coloplast's stoma nurse really prased it. you're supposed to spray it on the wafer (not on yourself ever) let it dry for 5 min then apply on the skin.

can you call hollister and ask for a representative stoma nurse to guide you with that? over here we can call them, leave a name and no. and a stoma nurse calls you back within 1-2 days. so i called and she told me to also try the wafer that has all of it's surface sticky yellow - i don't know how it's called, but the regular wafer has that sticky yellow stuff only at the center of the wafer and the other wafer has it all over it's surface - you know which one i mean? the point is that you can spray the adhesive spray only on the sticky yellow, so that's why i use the one that has all of it's surface yellow... well, i feel my explanation is a bit hazy, so i hope it was useful for you..

but if you talk to hollister's nurse, mention the sensitivity of your skin, cuz maybe the adhesive spray is not good for sensitive skin, i don't know. good luck, keep us posted.
Hodaya
06/05/2007 - STARR procedure
colonic inertia w/pelvic floor dysfunction
08/16/2009 - total colectomy w/ileorectal anastomosis
07/08/2010 - loop ileostomy

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 8/24/2010 6:03 PM (GMT -6)   
summer, yes, hollister's paste is not good, but their adhesive spray is the best. that's what those 2 nurses said.
Hodaya
06/05/2007 - STARR procedure
colonic inertia w/pelvic floor dysfunction
08/16/2009 - total colectomy w/ileorectal anastomosis
07/08/2010 - loop ileostomy

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 8/24/2010 6:35 PM (GMT -6)   
Stephanie~instead of waiting for all the samples to come in, can you get an appointment with your ET Nurse? They can usually squeeze patients in when they are having issues skull

They should have most of the products to try...it might be worth a shot!
Crohn’s dx 1989
some terrible years before my
temporary ileo in 2001
Proctocolectomy w/end ileo in 2008
...wish I knew then what I know NOW!

80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 8/24/2010 6:38 PM (GMT -6)   
I can barely even get a hold of them on the phone, let alone go in for an appt. Especially with my job hours. I'm working exactly when they're open. :/ I'm playing phone tag with them now.
Stephanie, 28 years old
Diagnosed with Crohn's Colitis March 2000
Possible diagnosis of IBS-D
Total Proctocolectomy and Permanent Ileostomy 3/18/10! :)
Blockage/Ileo revision 6/8/10 :/
 
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 taking: Prenatal Vitamin, Vitamin B 12 Complex, Biotin, Vitamin D, Calcium, Flomax (for urinary retention). 

answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1325
   Posted 8/24/2010 8:38 PM (GMT -6)   
80'schick, I ran across this website when I was looking at all the ostomy manufacturers. Check out this link....it is a non-adhesive ostomy system???? Maybe you can call them and ask for a sample....


http://www.nu-hope.com/

And here is a website that if you scroll to the bottom, you can see all of the manufacturers and you can call all of them and ask for samples...

http://www.ostomy.org/ostomy_info/wocn/wocn_discharge_planning.pdf

Good Luck, Tracy
Diagnosed w/colonic inertia, obstructive defecation syndrome, anismus, rectocele, and intussusecption
2005-hysterectomy w/pelvic prolapse repairs
2006-sacralcolopopexy
2010-subtotal colectomy, rectopexy, and temporary diverting loop ileostomy
Take-Down-TBA
 


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5968
   Posted 8/24/2010 9:13 PM (GMT -6)   
     Nystop was a by prescription.  It's for irritation of the skin around the stoma.  But I suppose it could be used anywhere on the skin.  Works wonders...cleared it up after one application.
Ulcerative Proctitis since Sept of 1998. Hospitalized for eight days. Prednisone, Asacol, Rowasa enemas. Two year remission. Flare..switched from Asacol to Colazal. Two year remission. Started 6MP in 2002. Flared yearly from 2003 to May of 08. Hospitalized for ten days in May of 08. Flaring more often since. Off 6MP. Remicade failed. Humira failed. Total colectomy with perm. ileo .

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 8/24/2010 10:20 PM (GMT -6)   
no what i meant was apparently people are having trouble with their hollister bags not working correctly, they wont stay sealed, or the bags bust.
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-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 8/25/2010 1:24 AM (GMT -6)   
Steph Convatec Stomahesive wafers and the velcro ended bags. Good you don't use any soap to clean for a change just water. Get old sticky off with UniSolve. Then use the water and pat dry. Then apply a coating of All Care Wipe. Then flatten an Eakin Seal in your hand. Press it nice and flat and the heat from your hand will make it nice and sticky. Cut a hole in the center that fits around your stoma. Put that on after you use the All Care wipe. Then put on the wafer. Then click on the bag. (OR pre assemble the wafer and bag and just put it on after you've used the all care wipe and have put on the Eakin around the stoma.) I've been using this method for 3 years and (Wrap wood) no leaks so far. Have done a lot of travel and ball room dancing with this an no issues.

Best of Luck, I give you a LOT of credit for teaching 5th grade and being a dancer on the weekends. I could not do it. My hat is off to you.

Rosemary

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 8/25/2010 3:07 AM (GMT -6)   
stephanie, that's too bad :( sounds like it doesn't work the way it does here, in Israel. over here each company has a call center and they are very attentive. the company's stoma nurse calls you back within 1-2 days and advises you. i have my own stoma nurse both from hollister and coloplast + their cell phone. yesterday i had coloplast's stoma nurse come over to guide me with their equipment + i don't have to pay a dime. isn't it like that in the USA?

summer, i have no trouble with hollister's bags, well they are the only ones i've tried so far. my problem was with the wafers, they kept peeling so easily and falling off, esp while in the shower, so now that i use the adhesive spray, they don't fall off anymore and don't even peel a tiny bit.

but anyway, i wanted to see what coloplast is like, so yesterday coloplast's stoma nurse came over to show me how to apply theirs, so i'm gonna try theirs for a while. i still have the wafer of hollister's on, but will change it today or tomorrow with coloplast and see how it works for me.
Hodaya
06/05/2007 - STARR procedure
colonic inertia w/pelvic floor dysfunction
08/16/2009 - total colectomy w/ileorectal anastomosis
07/08/2010 - loop ileostomy

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 8/25/2010 1:51 PM (GMT -6)   
i have just been reading on UOAA.org about people having trouble with hollister. one woman said she had 400 bags to send back!
Thats all i use too, so im hoping it doesnt get me!!!
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-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 8/25/2010 1:59 PM (GMT -6)   
LOL, nah it shouldn't get you, summer.. you've been using hollister for more than 3 yrs, right? i think that those with problems are probably newbies, like me :) LOL you're funny :D
Hodaya
06/05/2007 - STARR procedure
colonic inertia w/pelvic floor dysfunction
08/16/2009 - total colectomy w/ileorectal anastomosis
07/08/2010 - loop ileostomy

polishdan
Veteran Member


Date Joined Mar 2010
Total Posts : 1595
   Posted 8/26/2010 11:18 AM (GMT -6)   
Christine1946
You need to get some EZ-vents. They are not a filter, just a vent that you stick on the top of the bag and make an opening in the center. When you need to let out gas you just open the plug and let it out and close the plug. If it plugs up overnight just clean it out with a toothpck or open it in the shower and let water go in. I have used them since day one with Convatec one piece with no problem. They do not fall off! You cannot get them off!

Dan
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