should u leave a gap???

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

tryingtokeepmyheadup
Regular Member


Date Joined Nov 2010
Total Posts : 215
   Posted 6/27/2011 8:37 AM (GMT -6)   
OK  I'm confused confused    I have an end ileo
I've read you should leave an 1/8 inch gap around the stoma and I've read you should make it as snug as possible.  Which is it?  When I leave a gap, it seems a little stool gets in there under the wafer and irritates my skin.  When I make it snug, it seems I leak more!  As if when the wafer turtlenecks and expands, it may be pushing up and removing the seal.  I have 1/8 inch of dead skin below my stoma and the last time it was cut snug, when I pulled off the bag it pulled the dead skin off too and was bleeding a lot!  I'm really afraid of an open hole below the stoma!  I have more dead skin still on the right / underside and I'm afraid of ripping that off too.  I guess it needs to come off eventually??
I know the stoma can swell which is the reason to leave a gap but it seems that's just asking for irritation?!  Can I do this without seals / paste or do I need to purchase that extra stuff to protect my skin?
thanks for any advice, I'm new to this!
DX 2/10 UP. DX 10/10 UC. Now testing for Crohns. I tried: Asacol, codeine, tramadol, Xanax, Imodium, Canasa, Bentyl, Imuran, Prednisone, Flagyl, Cipro, Morphine, Vicodin, Prozac, Remicade ~ nothing worked. 1st surgery 6/8/11! 2 more to go!

tryingtokeepmyheadup
Regular Member


Date Joined Nov 2010
Total Posts : 215
   Posted 6/27/2011 8:39 AM (GMT -6)   
oh, and a side note, is it bad to tug on the top of the bag to get the stool to slide down away from my stoma?
DX 2/10 UP. DX 10/10 UC. Now testing for Crohns. I tried: Asacol, codeine, tramadol, Xanax, Imodium, Canasa, Bentyl, Imuran, Prednisone, Flagyl, Cipro, Morphine, Vicodin, Prozac, Remicade ~ nothing worked. 1st surgery 6/8/11! 2 more to go!

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 6/27/2011 8:55 AM (GMT -6)   
I don't leave a gap on purpose because that doesn't make sense to me. But there usually is but the paste fills it in. I'm not sure what you mean about the dead skin, is I like when your skin peels and there is good skin underneath?
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!

tryingtokeepmyheadup
Regular Member


Date Joined Nov 2010
Total Posts : 215
   Posted 6/27/2011 9:35 AM (GMT -6)   
it's like where they stitched my skin to the stoma, the skin died and when the skin was ripped off, it was just a gap and blood.
DX 2/10 UP. DX 10/10 UC. Now testing for Crohns. I tried: Asacol, codeine, tramadol, Xanax, Imodium, Canasa, Bentyl, Imuran, Prednisone, Flagyl, Cipro, Morphine, Vicodin, Prozac, Remicade ~ nothing worked. 1st surgery 6/8/11! 2 more to go!

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 6/27/2011 10:17 AM (GMT -6)   
Have you had a nurse look at your skin?

I think the point of leaving the 1/8 inch gap is that the stoma changes size when it moves things through.... I can see this when I am in the shower w/out a bag on. My nurse said I was cutting mine too close when I was having leaking problems, and cutting it a little bigger helped. She also told me my stoma was oval -- I had never tried measuring from different angles and I
couldn't see it in the mirror. It's been better since (also w/the convex wafer)

I would imagine that different people are different in terms of how much their stomas expand etc.

I always wear an Eakin seal to protect that ring of skin near the stoma. I haven't had the kind of skin problems you're describing, though -- just has been very red when I didn't wear the eakin, but it cleared up after wearing 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

Blueheron
Veteran Member


Date Joined Feb 2010
Total Posts : 720
   Posted 6/27/2011 12:45 PM (GMT -6)   
I think the reason there are so many differing opinions on the size of the gap is that everyone's stoma sizes and stoma behaviors are vastly different. I need to leave a gap as my stoma expands and contracts A LOT. Sometimes when I was cutting a new pattern, it would be perfect only to be 1/8 inch too tight by the time I was ready to put my wafer on just because my stoma had expanded (and was ready to output... ugh!) in a matter of minutes. The times I have cut mine too small, I know because my stoma turned a dark reddish purple color in some spots. Now I just cut it with 1/8 gap and use the Eakin to fill in the space with a material that protects the skin but is more forgiving movement-wise.

My stoma is an oval with a few irregular spots... almost like and oval-ish blob:) It took me a while to make the perfect pattern (my stoma shrunk over a period of three months after surgery) for cutting my wafers. Now I have a pattern that accounts for the irregular shape of my stoma very well. I just put it on the back of my new wafer, trace it, and then cut. I then test it over my stoma and make minor adjustments in case I didn't cut it exactly right the first time.

The Adapt rings, though they worked much better than the Coloplast strips, didn't work as well for me as the Eakins. With the Adapts, my stoma would punch them back as it expanded and contracted and then I could see the skin again. The Eakins get sort of gooey and really stick to the skin next to my stoma well. They are a little harder to remove, but that is the same thing that makes them work so well for me.

As far as the wound next to your stoma, you might want to get it checked out again if it isn't clearing up. As I mentioned in the other post, is it a case of your stoma separating from your skin a bit (mucocutaneous separation)? For me it looked like I could see the edge of my skin where it was cut, and then there was a 1/8 inch wide gap that was about 1/8 inch deep and then my stoma. It also looked like the stitches had ripped through my skin along the edge that was affected. It is a fairly common complication, many times caused by poor healing due to prednisone. A trip to your stoma nurse could help get this sorted out. They have some cotton-like dressings made out of an algae material that can be put in the gap to aid in healing. This could be something that would take a lot longer to heal on its own without this special dressing. I know it is a pain to go back in, but it would probably be worth it. Maybe they can show you how to use the rings and strips too:)
-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

tryingtokeepmyheadup
Regular Member


Date Joined Nov 2010
Total Posts : 215
   Posted 6/27/2011 12:50 PM (GMT -6)   
thanks all! Im going to suck it up and go see my WOC nurse tomorrow.
DX 2/10 UP. DX 10/10 UC. Now testing for Crohns. I tried: Asacol, codeine, tramadol, Xanax, Imodium, Canasa, Bentyl, Imuran, Prednisone, Flagyl, Cipro, Morphine, Vicodin, Prozac, Remicade ~ nothing worked. 1st surgery 6/8/11! 2 more to go!
New Topic Post Reply Printable Version
Forum Information
Currently it is Thursday, April 19, 2018 7:29 PM (GMT -6)
There are a total of 2,953,398 posts in 324,001 threads.
View Active Threads


Who's Online
This forum has 162074 registered members. Please welcome our newest member, 831jen.
420 Guest(s), 10 Registered Member(s) are currently online.  Details
Froggy88, 3 putt, Angel07, Pratoman, FLBeachgal, Busted1, F8, Quilter2015, xy123, halbert