Question for Sure Seal users...

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run4pancakes
Veteran Member


Date Joined Oct 2008
Total Posts : 938
   Posted 6/13/2011 11:18 AM (GMT -6)   
I ordered my first Sure Seals today and am anxiously awaiting their arrival. I'm glad I finally quit putting it off! I do have one question for those who use them based on a conversation with my ostomy nurse. She said there can be issues if you use the SS's all the time because of the waterproofing, etc. Basically she was concerned that because I run and sweat that the moisture would be trapped under the wafer and I'd be more susceptible to fungus and nastiness. Have any of your experienced those issues? I'm not sure I would use one all the time...but I definitely want them for my longer training runs on Saturdays (in a few weeks those runs will be an hour long or more) and for our beach vacation in early July. If it's not going to be an issue though, it would be nice to have that extra security all the time.

Blueheron
Veteran Member


Date Joined Feb 2010
Total Posts : 720
   Posted 6/13/2011 12:32 PM (GMT -6)   
I ordered my Sure Seal sample about three weeks ago and still haven't received it, but I can see what the nurse is saying because I am having issues with my Coloplast wafers for the same reason. Every time I go for a hike with the Coloplast where I sweat a lot, I get this heat rash looking stuff under the outer 1/2 inch perimeter of my wafer. It never happens if I am not active while using the Coloplast wafer so I know it isn't an allergy. I have recently changed to Convatec which has tape instead of plastic and they breathe soooo well. No bumps during exercise at all. I love them. However, I ordered a bunch of Coloplast right after surgery and I am still trying to use them up by using one every few wafer changes. Every time I use the Coloplast and exercise... those itchy bumps come back. I don't think my skin likes to sweat under plastic-like materials. I know Sure Seals are suppose to be breathable, but not sure if they are to the extent necessary for heavy exercise.

I plan to use Sure Seals (if I like them after getting the sample) sparingly. For example, on long days at the pool or water park, or for races etc. when I get back into running. Otherwise, my Convatec seem to currently stick fine for hour-long swims and all day hikes with no reinforcement (except for a strip of Medipore tape here and there when the outer part of the wafer peels up around the edges.

I can see how with your current leaking woes though, how you would want the extra confidence they provide. You may just have to stick to them when absolutely necessary.

Also, have you tried Convatec Durahesive? For me, the combo of tape and Durahesive material seems to stick so much better than Coloplast or Hollister which also might help with your leaking issues. When I have my Convatec on, I feel so much more confident exercising than with the other brands. You can get their Durahesive wafers in moldable, cut-to-fit, or pre-cut options. I use the cut-to-fit with an Eakin as the moldables don't work with my oval stoma. The nurses at Convatec are great and will talk you through all the options and send you any samples you need quickly.

I am meeting with my stoma nurse next week and will ask her about the Sure Seals. I will let you know if I find anything out.
-39 years old
-Officially diagnosed with UC in 2006, though had symptoms since 1999.
-Had mild/moderate symptoms continuously until severe flare in autumn 2010 which required 2-week hospital stay
-Took Asacol, Rowasa, Canasa and Prednisone to manage flares but meds stopped working
-Tried 1 dose of Remicade but had excruciating joint pain and discontinued
-Had permanent ileostomy surgery 11/8/2010

run4pancakes
Veteran Member


Date Joined Oct 2008
Total Posts : 938
   Posted 6/13/2011 3:35 PM (GMT -6)   
You know, it's been over a month since I requested the sample and I still haven't received it. Edgepark said my insurance would cover 80%, so I was willing to go ahead and order one box to try them.

I have not tried other wafers. The ostomy nurse I spoke with is supposed to be sending me some samples so I can experiment a bit.
UC dx 2/08

Done with the drugs. Step 1 (of 3) J-pouch surgery 3/22/11, Steps 2 & 3 TBD
http://life-takes-guts.blogspot.com/

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 6/13/2011 3:41 PM (GMT -6)   
First of all, the Sure Seals are BREATHABLE...as well as being waterproof yeah and I have never experienced any problems with bad skin under the Sure Seal

I run A LOT and have only had issues with my wafer not sticking when I DID NOT wear my Sure Seal skull Lesson learned!

Just remember there is a learning curve when using them the first few times but you'll figure them out!!
formally known as OHIO76 ~ honoring my daughter's passion!
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!

steelcitystrong
Regular Member


Date Joined May 2007
Total Posts : 41
   Posted 6/13/2011 3:50 PM (GMT -6)   
I Tried mine for the first time last week and was disappoint after the high expectations. It didnt seem completely waterproof as I had thought. I use a Hollister 2 piece and closest to the opening, there was about a mm, enough for water to come in during a shower and also around my seal near belly button. Water would definitely leak even more submerged in a pool (what I bought them for!). This would be ok but the wafer was still wet underneath even hours later, making me nervous for fungus, irritation, etc. Any tips?

windy city
Veteran Member


Date Joined Dec 2010
Total Posts : 607
   Posted 6/13/2011 7:08 PM (GMT -6)   
I can agree with Nascar regarding Ostomy nurses, everything I was told in the hospital and the 1 time at home, was just the opposite for me. I learned everything on my own. And everyone's experience is different. Personally, I have always used the Convetec Durahesive moldables. It's so flexable and comfortable, I can do all my yoga tricks easily. about 4 months ago, I requested sure seal samples. It took over a month to receive. It was still winter, so wanted to use them because the more weight I gained back from surgery, the more predominant a dip was coming from my once open incision. So, I cut the sure seal in half and used only half on that side. It locked in leakage (always come from that dip), was unfortunately a bit harder to remove but used more adhesive remover and washed washed washed, it preformed to my expectations and really kept the wafer paper down, didn't cause skin/moisture irratation issues, and increased my weartime. Going to purchase some now, it's summer here and would love to finally to swimming! I'll see how it goes :-)

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 6/13/2011 7:26 PM (GMT -6)   
you may need to cut and paste areas. I always have to cut another sureseal up and patch around my belly button and i usually miss another area too, and i just cover that up with another piece.
Its kind of a pain at times, but its so worth it!
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!

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 6/13/2011 8:33 PM (GMT -6)   
I used to patch like summerstorm...now I trim my wafer and Sure Seal in my problem areas and the Sure Seal fits and performs better!

It took me about six months of using them to really get the performance I expected...but now I wouldn't go a day without them:) There really is a learning curve to them!!
formally known as OHIO76 ~ honoring my daughter's passion!
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!

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 6/13/2011 9:31 PM (GMT -6)   
One thing I found helpful with trimming the sure seals is to make the hole in the middle bigger.... I just cut off about 1/8 of an inch with the curved scissors, and then the hole is closer to my wafer size. I cut the sure seal in half, and then bend to cut off pieces to avoid my belly button and other areas.

I have been having trouble with my skin below the wafer. Be sure to shave any pubic hair that the sure seal goes over (I guess any hair at all, but mine needs to be in the pubic area a little if there's going to be enough sure seal to make a difference -- and I don't really have hair the other places it goes). I have some folliculitis, and I think it started when I didn't shave, and it's hard to get rid of (don't have it under the wafer, just the sure seal). I posted on this a bit ago....

I had a nurse tell me to try stoma powder with skin prep over it under the sure seal. I sure don't recommend that -- sure seal won't stick at all to the powder.... maybe I didn't use enough skin prep. It was fine w/just skin prep.

Hope the sure seal experiment goes well for those trying them for the first time.

BTW, initially I got a sample from edgepark, not the company..... that was pretty fast, although they sent the small, which wasn't very helpful, so I'd definitely request the medium.
48 years old, female.
2004 dx indeterminate colitis. Back and forth between Crohn's and UC dx. Many drugs, minimal success.
2010-11 Crazy skin and eye complications, high fevers, bad flaring. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery

run4pancakes
Veteran Member


Date Joined Oct 2008
Total Posts : 938
   Posted 6/13/2011 9:44 PM (GMT -6)   
Edgepark told me they couldn't send a sample. Actually, it wasn't the normal people I talk to there. A woman called me to follow up on my recent orders and see if I needed anything and I mentioned I was waiting for the sample and asked if they could get one for me. First she had no clue what they were even as I tried to explain it. I finally had to direct her to the manufacturer's website! Then she had to call me back about it and she eventually called back and said they couldn't sample them but my insurance would cover 80%. I decided it was worth a few bucks to try it out, especially as much as they seem to help a lot of you. Heck, if I knew it would mean running worry free---especially as I approach two hour long training runs this summer---I'd pay full price.
UC dx 2/08

Done with the drugs. Step 1 (of 3) J-pouch surgery 3/22/11, Steps 2 & 3 TBD
http://life-takes-guts.blogspot.com/

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 6/14/2011 6:13 AM (GMT -6)   
Hope they work for you. Fingers crossed!

The guy I talked to at edgepark wasn't that familiar with them either, but when I gave the catalog number, he sent a sample..... hmmm, was probably my fault that I got a small, now that I think of it.
48 years old, female.
2004 dx indeterminate colitis. Back and forth between Crohn's and UC dx. Many drugs, minimal success.
2010-11 Crazy skin and eye complications, high fevers, bad flaring. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery

run4pancakes
Veteran Member


Date Joined Oct 2008
Total Posts : 938
   Posted 6/19/2011 10:43 AM (GMT -6)   
Ok, I officially love my Sure Seals. Yesterday I had a four mile training run in serious heat and humidity. I sweat like a beast! Then came home, showered, and headed out to an outdoor festival. Walked around there for five hours....more hot and humid weather and serious sweating! At one point my bag got more full than I normally like to let it while we were watching some bands. Oops! I just wasn't aware of it, I guess. Got home and found that I'd lost my seal at the bottom. I'm guessing from all the sweating all day long and then getting overfull. This would have been a huge mess, but the Sure Seal held it all in...not even close to leaking out on me or my clothes. It was also nice because I was able to take my time getting my supplies together for the change, too.

It was pretty tricky getting the first one on and I did have to trim it at the top and bottom to keep it away from my belly button and pubic skin area....so worth the effort though! I am definitely a believer!

lifeinterrupted
Regular Member


Date Joined Mar 2011
Total Posts : 103
   Posted 6/19/2011 11:41 AM (GMT -6)   
What size did u order? I ordered the mediums but sent them back because they seemed way too big.... Can u also tell me how u applied?
Dee stay at home mom of my 2 beautiful children
dx with uc July '10
June 02 '11 the creation of Stella the stoma LOL! ;-)

Prov3:5,6

Trigirl
Veteran Member


Date Joined Jan 2006
Total Posts : 768
   Posted 6/19/2011 12:57 PM (GMT -6)   
I LOVE sureseals. I just did my first Olympic distance triathlon (surgery Aug '09) and the sureseals kept working when the out later of Hollister flange was sweated off.

I don't wear them all the time because they cost so much but man, they work every time I've worn them. I could see if you didn't change when you had the wafer(flange) having seepage? failure there could be nasty rash or fugus, but haven't experienced it.

So run4pancakes, you're a running. Do you race? What kind of distance do you like to run. I really need to focus on my running but don't have much motivation alone sometimes. I like running with friends. Even the treadmill if I can watch a movie at the same time. The weather is getting better these days so hoping to run outdoors more. My goal is to do a marathon again. Last one I was sooo sick I barely made it to the end. Probablyshould have quit and not tried to kill myself but I havenever thought of myself as a quitter. Would like to get back to running under 2 hours 1/2 marathons and work up.

Good luck to youin all your adventures!
Those things we keep trying to do get easier not because the feat gets easier but our ability to "do" gets better.
Thyroid cancer removed 1988
Stomach problems finally figured out 2001 Crohn's/Colitus
Tried every drug without much success
Colon/rectal cancer removed Aug 2009
6 Grown kids, grandkids and a great husband to keep me busy

Brian84
Regular Member


Date Joined Mar 2005
Total Posts : 457
   Posted 6/19/2011 10:36 PM (GMT -6)   
I actually decided to order these a few weeks ago. I wasn't really sure how to put it on so I first put a brand new wafter on top of the seal and then trimmed 1/8 inch around it. That was fun because it kept sliding all over. Then I changed my appliance, peeled the plastic part off of the seal and I was walking around the house with this paper part around me. I was like "are you kidding me??? People are raving about this seal that feels like I have non flexible wax paper around my wafer? Then I realized I had to peel that part off too. Der... I was like "ohhhhh THAT makes more sense."
Ive had mine on since friday and havent had any issues. I just realized I should have shaved a little wider though.

sno92c
Regular Member


Date Joined Sep 2009
Total Posts : 81
   Posted 6/20/2011 12:25 AM (GMT -6)   
Love sure seals!! Never had a problem with them!
Diagnosed in 2004 with Crohn's disease. Resection in 2009. Have tried almost every medication and nothing has worked. Total proctocolectomy June 16, 2010

run4pancakes
Veteran Member


Date Joined Oct 2008
Total Posts : 938
   Posted 6/20/2011 7:58 AM (GMT -6)   
I am using the Medium size. As I understand it, the sizing is based on the size of the hole so it will go around your flange and that's the size that fit mine. I put my wafer on as a diamond (versus square) so I have to trim a bit off of the top and bottom "points" of the Sure Seal so it isn't getting into my belly button or down into the pubic line. All I do is sort of hold it in place over my old pouch to roughly see how far up or down it will go and then I trim some off. I did find them a little tricky to apply and also got stuck at the step where I still had the white part on there and I was a bit confused and not happy with how that felt! Once I looked at the diagram again, I sorted it out. :-)

Trigirl: I am currently training for a half marathon. That is my favorite distance to race right now. My long run on Saturday will be 5 miles (race is in mid-October). I'm trying to do a 2:30 or better half this fall....for me that will be a great achievement! Then I will have Step 2 surgery (hopefully right after) and hopefully Step 3 in December or January. I will have to push to get ready for my Spring half (trail half in mid-May) but I think I can do it. I was able to start running again around 7 weeks after the colectomy, so I would think it would be even sooner for just take down surgery. At any rate, I ultimately want to do a full marathon next fall. I've never run one before and I think it would be the ultimate celebration of overcoming UC and moving on into my healthy life. :-)
UC dx 2/08

Done with the drugs. Step 1 (of 3) J-pouch surgery 3/22/11, Steps 2 & 3 TBD
http://life-takes-guts.blogspot.com/
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