My set up

Hey guys.  I’m so sorry about the long since I last updated.  I’ve tried twice and fell asleep.  I’ve got a job I nailed (yay go me!) but it kills my internet connection, since it’s work from home.  I get special access to a VPN which makes it so I can only access the internet through their set up.  Anyway, it’s been great, I had a wonderful Christmas because of it and things have been going pretty well lately.

Recently I have seen a few people having trouble with their bags sticking and I thought I would offer my set up and advice.  I’m still a relatively young female and I’m single. I’m super self conscious about leaks at all times.  I would be out in public, look at my roommate and suddenly say, “We need to get home, now.”  We’ve left the grocery store, our shopping cart full of stuff, and rushed home because of this.  She’ll then go back out herself and finish shopping, but it’s horribly embarrassing.  Now, I have mentioned my belly wraps before, and I’ll mention them again.  The only thing that saves me from having a huge poop stain on my shirt, when this happens, is those belly wraps.  I don’t know what kind of magic material they’re made of, but they keep the liquid in (for the most part).  If you’re quick about it, you won’t feel it leak onto your clothes.

Anyway, so I spent about two months trying various different bags until I found the perfect bags for me.  I used to be okay with Convatech’s opaque drain able pouch with a peek-a-boo window.  But something happened over the last year, and their wafer stopped sticking so well.  I ended up with leaks almost every day.  So I had to switch to Coloplast.  I have never been able to get any of the Hollister products to work for me.  And the belts were uncomfortable and left an obvious extra ring around my body (remember, young single female with a horrible idea of self image and always wanting feel like I look good).  So, vanity got the better of me and I found another solution.  I go through this routine once every three days (or when my mucous fistula bag pops open at the top of the seal).

At the bottom, I’ll list the Reference numbers for all the products I use, if you feel like trying them.

On bag change day, I set up two doggy poop bags, one large disposal bag (the kind that come with the box of new bags) and my Sensi Care Sting Free Adhesive Releaser.  I then grab a few squares of toilet paper for the stoma and the fistula and set them to one side of my sink.  On the other side, I set up two new bags (cut to the right size), Sensi Care Sting Free Skin Barrier, Stomahesive adhesive paste, a few more squares of toilet paper, and my hair dryer.  On the floor, I set up an old grungy towel I have designated as my “bag change towel”.

Now, my ileostomy is almost constantly producing and since I can’t feel it when it goes, I never know when it’s going to suddenly drip, or plop something out.  I have carpet in front of my skin, so before I started using my towel, there was much scrubbing of the floor, after my bags set.  Now I just wash the towel instead.

At this point, I remove the mucous fistula bag first (since my ileostomy is so active) and I use a couple squares of toilet paper to make sure I don’t drip or end up with long strings.  Think of super snot, that’s the kind of mucous I deal with.  I’ll wipe up any excess that might drip and then I move on to my ileostomy stoma.  I don’t clean up the fistula completely, since I’m about to get in the shower and my soap is better at that.  I’ll start the shower at this point, so the water is ready for me as soon as I’m done with my ileostomy bag, and then I turn on the hair dryer (lying on its side, blowing across the two new bags), and remove my ileostomy bag, using a square or two of toilet paper to wipe up the excess and hold over my stoma as I move to the shower.  As I’m getting into the shower, I’ll toss that piece(s) of toilet paper in the toilet I left open.  It is also important to note at this point, I keep a couple pieces of toilet paper on the back of the toilet  for when I’m done with my shower, so I don’t drip when I get out.

Once I’m done with my shower, I grab the toilet paper, cover the ileostomy, and then proceed with drying the area around the stoma.  Spray it with the Skin Barrier and use the toilet paper to keep the output from messing up my sticky space.  Then I can take the hair dryer, blow it directly on the stoma pouch and make sure it is warm all the way around and apply it.  I will check the edges and any edges that lift, I hit with the hair dryer directly and press on.  Then I do my mucous fistula.

I use the Stomahesive at the bottom of my incision line.  Because of where my mucous fistula is, there is about a quarter inch divot of scar tissue right where my bag is supposed to seal, at the top of the fistula.  Also, because of where my fistula sits, the bottom of my bag wraps around the bottom fat roll, just above my public area.  This placement is probably the worst possible place for a mucous fistula but apparently there wasn’t enough length to put it anywhere else.  So, I will spray that area with the barrier spray and then hit that bag with the hair dryer directly, too.  Then I apply a layer of Stomahesive around the opening of that bag and apply it.  Once again I check for any lifting and spot hit with the hair dryer.

After all that, I’ll spend up to an hour, not doing anything and just letting the bags and paste set.  If I try to do much in the mean time, or sit up straight, I’ll end up with leaks.  I try not to vary from this routine, because it took me months to perfect it.  The only reason I have to change my bags so frequently is the stoma past will pop lose on my scar tissue and anyone who has a mucous fistula will tell you, that is the worst smell in the world.  I’ll take baby diapers over mucous fistula any day.  I used to muck stalls in a horse stable, live around cows, and skunks.  I have yet to find a smell that is worse than mucous fistula.

Anyway, it’s hard to get anything to stick to the scar tissue, so I don’t mind that it pops open every few days.  I just take a shower and start over.  Oh, and of course, the belly wraps I got from ostomy secrets are a huge help.  They keep everything pressed against my body, but not so tight there are lines, or the bags can’t fill normally.  Below you will find everything I use and a link to ostomy secrets

Ref: 420798: Sensi Care Sting Free Adhesive Releaser

Ref: 413502: Sensi Care Sting Free Skin Barrier

Ref: 183910: Stomahesive stoma paste

Ref: 15532: 1 in pre-cut opaque Coloplast drain able 1piece pouch

SenSura Mio: opaque 1piece drain able pouch, adjustable size (it will fold in half and the bottom will attach to the peek-a-boo window, perfect for my fistula) (for men and women)


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