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Leaks, leaks, LEAKS!!!

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Leaks, leaks, LEAKS!!!  
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Posted 5/6/2013 11:32 AM (GMT -7)
I have a bag for urine only. A urostomy. I came home with a bed bag. and I was not going to carry a piss sack around. I did a lot of on line research and found out about a leg bag but it was very inconvenient with tie straps. Found a better bag. The hoses would pull off and I got wet. Studying this I tried a gel  super glue that kept the connections secure and I could remove two connectors leaving only  two connections in place of four. Many times I got a leak around the seal ring and bag or the wafer to skin seal was pulled loose. Got wafer seal to stick to skin by removing

old glue using adhesive remover pads and shaving around stoma a larger area than needed. Found that very smooth close shave not best. Needed some little hairs for good stick, slightly used blade better. I suck in abdomen as I apply wafer to skin after I have heated it with hair dryer. Attach bag, just in case of sudden flow, and using heat press seal onto skin. On line there are covers for this. Very expensive and needs to be replaced after a few months or less. At a Hobby Lobby store I found several types of light weight, cheap long lasting foam plastic door knob hanger strips. I cut off the bottom third. Then cut a one an one half  inch opening from the bottom end to the pre-cut opening and super glued the cut off piece over the opening. I  use two inch wide paper tape to attach it to bag. Tape is easy to remove and allow reuse of cover. I tried several types of waist bands to help keep everything in place while sleeping or driving  with seat belt. None worked good. I use a elastic back support. Got mine at CVS. I started to use longer length underwear. I wear long length  under shirts and pull shorts over it so top of shorts don't get under bag. Shirt and shorts are worn over back support Car seat belt never a problem. ALL THIS reduces lumps in clothing and problems with belt pressing on bag. Have this for three years no leaks "if I do good job". 

Posted 5/6/2013 4:21 PM (GMT -7)
I have been alternating between the swabs and the bottle and I notice no difference......although sometimes I have to use two swabs.
40 yr old female with Crohn's disease in the large bowel, two strictures. Have only been on mesasol, asacol and pentasa. Prednisone twice and Imuran. Started Humira June 2012. Stricture stretching July 25 and August 15, 2012. GI perforated my colon causing emergency surgery and permanent ileostomy. Loving life without the pain of Crohn's disease!
Posted 5/7/2013 6:33 AM (GMT -7)
Thanks for the update. I use two q-tips at each change. I use one before I apply the wafer and one after. I wear a two piece and apply Friar's around my stoma inside the wafer before I attach the bag. Just some extra protection because my stoma is often retracted.

Dan
Posted 5/8/2013 6:55 PM (GMT -7)
Sorry for the "hijack"; I am just so excited that I have to brag :).
I have ordered 2 50ml bottles of the right Fiar's from canada. Thank you Dan for your intel, I've read more posts about it and it made me sure that I want it.
Paid 40 USD with shipping to europe. Not bad as long as it doesn't go missing in transit.
It might take 3-6 weeks for it to get here so untill then I'm using liquid bandage (stinging one), which works quite well and helps me save money. It smells the same as the Coloplast Comfeel Protective Film (the stinging one, I think it's discontinued), seems to be working the same as well.
23 year old student with colitis ulcerosa diagnosed in 2008.
04/17/2013 Colectomy done laparoscopically.
Next step: Creation of J-Pouch and rectal resection.
Posted 5/9/2013 11:05 AM (GMT -7)
Wrikisli
If you have open skin Friar's T of B will let you know! It stings really well, but not for long.

Dan
Posted 5/17/2013 3:50 PM (GMT -7)
Hey again.

I got my Friar's :D.
Could you please tell me how much of Friar's you use per application?
Do you just dip a q-tip in it and smear it once or do you use 2 layers?

I would test it myself but I haven't got that many bags left and my supply has to last me untill july due to a nurse's error. (she stated that I have a colostomy instead of ileostomy to the insurance company. People with colostomy get a much lower limit. Basically I have to live off 40 bags for a little over 2 months)
23 year old student with colitis ulcerosa diagnosed in 2008.
04/17/2013 Colectomy done laparoscopically.
Next step: Creation of J-Pouch and rectal resection.
Posted 5/17/2013 3:54 PM (GMT -7)
If it makes you feel better bro, my insurance only covers 20 bags per month for my ileostomy.

Hope you have good luck with the Friar's!!
Liz, 26
itslikethisuc.blogspot.com

dx'ed UC pancolitis 5/12

past meds: asacol hd, VSL#3, apriso, rowasa, xifaxan, 6mp, cortifoam, pentasa, cimzia, canasa, butyrate, flagyl, cipro, prednisone, remicade, methotrexate, cholestyramine, cortenema

current meds: none!

step one: colectomy, end ileo 1/16/13
step two: j-pouch construction, loop ileo 5/1/13
step three: takedown 7/31/13
Posted 5/17/2013 4:07 PM (GMT -7)
Whoah that is crazy! I can feel your pain! Does it cover anything else like pastes, seals etc. ?
So far I have been asking every company possible to send me samples; If it wasn't for that I think I would have been f... screwed already.
23 year old student with colitis ulcerosa diagnosed in 2008.
04/17/2013 Colectomy done laparoscopically.
Next step: Creation of J-Pouch and rectal resection.
Posted 5/17/2013 4:22 PM (GMT -7)
Most insurance companies follow Medicare guidelines, which are 20 bags per month for ileostomy.
Alison
Age 41, married w 10 yo girl and 4 yo boy, working professional
Diagnosed w UC 2002
Tried sulfas, 5ASAs, Imuran, Remicade, Canasa, Rowasa, and way too much Prednisone
Hospitalized 4 times w flares in 2012
Total colectemy 4/2/13
J-pouch construction scheduled for 5/30/2013
Takedown planned for August 2013
Posted 5/17/2013 4:32 PM (GMT -7)
That is ridiculous. Here ileostomates can easily get 30 one piece bags per month.
I don't know how many wafers and bags for a 2 piece system.
Basically they give you a certain cash limit, according to it you can pick your own stuff.
For example:
You get 350 "coins" per month, 1 piece bags can be anything from 8 to 13 coins, wafers are 20, 2 piece bags are 8, convatec stomahesive paste is 50. You can pick your stuff from various companies. You just are not allowed to take any "fancy" stuff; that means nothing else apart from bags and sealing agents, no barriers, lotions, etc.
23 year old student with colitis ulcerosa diagnosed in 2008.
04/17/2013 Colectomy done laparoscopically.
Next step: Creation of J-Pouch and rectal resection.
Posted 5/17/2013 4:53 PM (GMT -7)
Ohh -- well I use two piece, we get 20 pouches and 20 wafers. I bet it's probably 30 for one pieces since the manufacturer's recommendation is to change a one piece everyday.

I can get four days wear time if I have to (I prefer to change after three) so I only use about half of what I get.

I'd be absolutely screwed without barrier rings though. I'd probably pay out of pocket.
Liz, 26
itslikethisuc.blogspot.com

dx'ed UC pancolitis 5/12

past meds: asacol hd, VSL#3, apriso, rowasa, xifaxan, 6mp, cortifoam, pentasa, cimzia, canasa, butyrate, flagyl, cipro, prednisone, remicade, methotrexate, cholestyramine, cortenema

current meds: none!

step one: colectomy, end ileo 1/16/13
step two: j-pouch construction, loop ileo 5/1/13
step three: takedown 7/31/13
Posted 5/17/2013 4:59 PM (GMT -7)
Aha. 20 wafers and 20 bags is more that I can get out of my insurance, still I am much more grateful now.
I like the 2 piece bags as well. I just love the ability of being able to customly fit the wafer and then put the bag.
BTW your blog made me rewatch Pulp Fiction(still in progress) which I rewatched a week ago! Such a great movie.
23 year old student with colitis ulcerosa diagnosed in 2008.
04/17/2013 Colectomy done laparoscopically.
Next step: Creation of J-Pouch and rectal resection.
Posted 5/23/2013 2:12 PM (GMT -7)
Hey.
I got it sorted out.
However I am thinking of a way to avoid using q-tips as they seem to be too absorbing for my liking. I don't want to waste any friar's :). So far my best idea is to use a glass or plastic stirrer, they would have to be dipped in the liquid way too many times.
Maybe a dropper that chemists use, we'll see.
23 year old student with colitis ulcerosa diagnosed in 2008.
04/17/2013 Colectomy done laparoscopically.
Next step: Creation of J-Pouch and rectal resection.
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