Above or Below the Belt

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fish1
Regular Member


Date Joined Jan 2010
Total Posts : 106
   Posted 10/13/2010 7:42 PM (GMT -6)   
I saw a utube video last night that showed an ostomate with the stoma and pouch above the belt line. I just wondered if most are that way or if most, are like me with the stoma below the belt line. I made sure when they marked me before surgery that it was well below my comfortable belt line. I had had a temp a few years earlier and I knew I wanted it lower for my perminent.

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 10/13/2010 9:40 PM (GMT -6)   
mine is below, i think it would be very hard to have one above the belt
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!

andorable
Veteran Member


Date Joined Jun 2005
Total Posts : 981
   Posted 10/14/2010 6:41 AM (GMT -6)   
Mine is below too, although when I was originally marked before surgery it was in line with my belt line too and then I was transferred to a private hospital as I had private cover and the stoma nurse there took one look at where the other nurse marked it and said 'no way' that will not work being that high up and I knew nothing about stoma's at that time so I am forever grateful I was transferred to that hospital and the spot was moved, even my surgeon said it was the perfect spot for it to go. I am really loving my stoma, never thought I would be this happy but its so wonderful to have quality of life again :-)

Brian84
Regular Member


Date Joined Mar 2005
Total Posts : 456
   Posted 10/14/2010 8:49 AM (GMT -6)   
Mine is next to my belly button

samlc25
Regular Member


Date Joined May 2009
Total Posts : 92
   Posted 10/14/2010 11:52 AM (GMT -6)   
Mine is above my belt line, which causes trouble.  After step 1 while I was home, my bag lasted me 4 days.  But now that I am back at work and wearing work clothes, my bag lasts maybe 2 days.  It's because of where my stoma is and my belt line cuts off flow and the poo builds up and stays around the stoma instead of falling down in the bag.  It sucks but my takedown is next Wednesday so I am rolling with it...

Brannah
Regular Member


Date Joined Oct 2006
Total Posts : 109
   Posted 10/14/2010 12:03 PM (GMT -6)   
Mine is also above the belt line. Like samlc25 says, the belt line cuts off the flow.
I have to wear pants with an elastic waist band or sweat pants so it can flow to the bottom of the bag. Regular jeans will also pull on the bag until the wafer comes loose in a very short time.
Jeans with an elastic waist band are kinda hard to find. I miss my regular jeans.

WeirdBeard
Regular Member


Date Joined Aug 2008
Total Posts : 123
   Posted 10/14/2010 12:50 PM (GMT -6)   
Mine is above the belt line, too. I have the same problem as the others. I keep thinking that there ought to be an invention that would go around the top of the bag to keep it from being squished. Then the poo could drop down like it is supposed to.

Are any inventors listening? idea

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 10/14/2010 1:12 PM (GMT -6)   
NASCARon has something :-) :-) :-) I am sure he'll be along!
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!

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 10/14/2010 2:10 PM (GMT -6)   
tape the top of your bag to your stomach, then the bag wont flop down and get pulled on!
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!

WeirdBeard
Regular Member


Date Joined Aug 2008
Total Posts : 123
   Posted 10/14/2010 4:05 PM (GMT -6)   
NASCARon, please share what you have made. It would be a big help to me and others. Thanks!
51 - male - in North Carolina near Asheville
UC is GONE!! Permanent ilieostomy on July 8th, 2010.
Stoma is named "Sparky".

80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 10/14/2010 6:17 PM (GMT -6)   
Mine is below.
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). 

polishdan
Veteran Member


Date Joined Mar 2010
Total Posts : 1595
   Posted 10/14/2010 7:33 PM (GMT -6)   
Mine is above the belt. I am constantly loosening and tightening my belt to get the sewage below my belt. It's a hassle. I didn't know I had a choice until I was being prepped for surgery and the nurse said "where do you want your stoma?". Spur of the moment decision. Nice. It's only for the rest of my life.

Dan

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 10/14/2010 8:12 PM (GMT -6)   
i think you can have them moved.

I have wondered when i hear people say they wear their bags over their underwear or over the pants and wear a long shirt to hide them, what kind of pants and underwear are they wearing that are that low?
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!

WeirdBeard
Regular Member


Date Joined Aug 2008
Total Posts : 123
   Posted 10/14/2010 9:06 PM (GMT -6)   
I am wearing suspenders a lot and overalls when I can. My ileo is above the level of my navel. The nurse and surgeon took a long time locating the spot they thought would work the best. The surgeon wanted it higher so that it could be attached to a certain muscle. They made sure it was above the belt line and not on it.

So it is very easy to hang the bag over top of my pants and wear a long tee shirt. When I do that I put on a bag cover just in case it gets exposed. And the covers are fun anyway. I have several - one that is camouflage with frogs on it, one with fish and sea creatures, and even one with Batman.

Might as well have fun with it, right?

I am still interested in what NASCARon invented...
51 - male - in North Carolina near Asheville
UC is GONE!! Permanent ilieostomy on July 8th, 2010.
Stoma is named "Sparky".

betsaronie
Regular Member


Date Joined Oct 2007
Total Posts : 318
   Posted 10/15/2010 9:52 AM (GMT -6)   
mine is about an inch above my belly button which makes it 2 inches above my pants when standing. Mine is a transverse colostomy so I couldn't really have it anywhere else. The location is really crappy because I have a natural fold right along my belly button line that's been there since I was a baby so when i bend my wafer digs into my stomach. Also when i sit, if I'm wearing jeans or anything stiff I have to unbutton the top button and pull the pants up and over the wafer because its natural inclination is to slide up my tummy, but the dumb wafer is right where the pants need to go! I'm so glad this is temporary, but it's coming up on pant weather and I can't wear any of the pants I own without having to fidgit every time I sit. Guess I'll just have to go shopping tongue
-diagnosed with UC Dec 2006 at 22
-allergic or intolerant to all 5ASAs, sulfa and 6-mp
-emergency transverse colostomy on 9/13/10 from perforated colon
-Now IBD is indeterminate tests will be done after healing if still UC J-pouch surgery, if Chron's take down of colostomy

Wakabo
Regular Member


Date Joined Sep 2008
Total Posts : 41
   Posted 10/15/2010 5:02 PM (GMT -6)   
Mine is slightly below my belly button and I frequently wish it was a little lower, for sure below the belt!!
JenG
 
Crohns since 1994, inflammatory arthritis, chronic ulcerative proctitis, endometriosis, hypothyroidism, depression
Two doses of Tysabri IV beginning of 2009, no longer on too many side effects, hospitalized for neuro problems, med helped though
Allergic to Remicade which helped me so much for about 5 years before developing allergy also allergic to Humira and Imuran
Taking Asacol and Aciphex, prempro, synthroid, xanax, Vicodin, elavil and cymbalta 
Scheduled for ileostomy Oct 2009

Allison77
Regular Member


Date Joined Feb 2005
Total Posts : 421
   Posted 10/16/2010 8:35 PM (GMT -6)   
Mine is about 2 inches lower then my belly button and about 1 1/2 inch to the left. I went and got an "X" marks the spot about 2 weeks before my surgery. I brought in a bunch of different types of pants and the nurse had me standing, bending, sitting, stretching....everything! I don't have any placement problems with Oscar.

-Allie
RX Crohn's 1999, over 30 surgeries, 3 strokes, permanent colostomy and rectum removal.
 
"The most unfortunate thing that happens to a person who fears failure is that he limits himself by becoming afraid to try anything new."

fish1
Regular Member


Date Joined Jan 2010
Total Posts : 106
   Posted 10/17/2010 6:16 PM (GMT -6)   
I guess this is something to keep in discussion when we have people asking for surgery advice on the forum. I would not have known either if I had not had a temp done a few years ago. I knew I wanted to be sure sure it was low enough, for the rest of my life! cool

WeirdBeard
Regular Member


Date Joined Aug 2008
Total Posts : 123
   Posted 10/17/2010 7:31 PM (GMT -6)   
Thanks Ron. I think I might be able to manage the one made from a pipe cap. I don't trust my self with a torch and plexiglass. I'm not that much of a handyman. :)

Thanks for the ideas.
51 - male - in North Carolina near Asheville
UC is GONE!! Permanent ilieostomy on July 8th, 2010.
Stoma is named "Sparky".

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 10/17/2010 9:24 PM (GMT -6)   
its like real estate, location location location!!!
it's so important to wear your normal clothes when you get marked!
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!

katiesmommy1
Regular Member


Date Joined Aug 2009
Total Posts : 94
   Posted 10/24/2010 6:37 PM (GMT -6)   
My daughter was 3 years old when she needed her colectomy. It's only been a year and at the time I was not aware that placement of her ostomy was so important. If her ileostomy is permanent do you think she could have it relocated in the future?
I mean right now it's right next to her bellybutton. Much higher than her belt line. I am concerned when she's a teenager if she's going to have trouble finding clothing that she will feel comfortable in.
Just wondering if it would be an option for her. I am always stressing over her future..I know I shouldn't, I just can't help myself. ;)

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 10/24/2010 9:40 PM (GMT -6)   
i would think they could change it sometime esp since people grow differently, some people end up with longer trunks, some gain height in their legs. You know what i mean? it would be hard to make a perfect placement on a small child
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!

bearbear3
Regular Member


Date Joined Nov 2010
Total Posts : 61
   Posted 11/16/2010 11:30 AM (GMT -6)   
My ileostomy is directly to the right of my belly button. So far it's caused a lot of leakage issues because I had the more rigid Convatec wafers initially. I just started using their one piece Active Life systems and it seems to be working a bit better. It's more flexible and since my stoma is right where I bend and move that's come in handy! I didn't have a choice where mine went as I ended up having emergency surgery after a routine colonoscopy gone bad. If I ever have to have a perm one I will definitely have it moved! I love the idea of elastic pants. I have ONLY been wearing hippie skirts since surgery (about two months). Any other clothing doesn't seem to work well with where my stoma is located.

WeirdBeard
Regular Member


Date Joined Aug 2008
Total Posts : 123
   Posted 11/16/2010 1:52 PM (GMT -6)   
So far overalls work the best of any clothing that I have tried. Maybe a kilt would work if I used the right pouch cover lol.
51 - male - in North Carolina near Asheville
UC is GONE!! Permanent ilieostomy on July 8th, 2010.
Stoma is named "Sparky".

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 11/16/2010 6:36 PM (GMT -6)   
if you start wearing kilts, you need to post pics!
and they have the highland games up that way somewhere don't they? you could just say you were practicing!
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!
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