How much does your ileostomy stoma stick out & does it affect your wear of convexity or flat wafer?

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esoR
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Date Joined Jan 2007
Total Posts : 4147
   Posted 2/24/2012 6:42 PM (GMT -6)   
This is just a curiosity question, but has to do with whether we need flat or convex appliances.


I am interested in hearing, how far your ileostomy stoma protrudes from your belly and if that determines if you can wear flat or need the convex wafers.

Mine protrudes a 1/2 inch and did from the start, but some weight gain has made me have to use convex wafers (the terrain changed around the stoma :-)

Rosemary

uc_free
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Date Joined May 2007
Total Posts : 645
   Posted 2/24/2012 8:21 PM (GMT -6)   
Mine protrudes about 2.5 inches. It is VERY long. I am probably going to get mine shortened. I have no leakage problems, but it keeps suffering trauma from rubbing against the part where the bag and wafer connect. Plus, it doesn't stick out; it hangs.
Diagnosed with pancolitis in 1998
Tried everything but Remicade over a 14 year period and Imuran was really the only drug that worked before it stopped in 2010
Flared for a year and a half before spiraling out of control
Proctocolectomy with permanent ileostomy 11/29/11
Finally on the road to recovery

esoR
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Date Joined Jan 2007
Total Posts : 4147
   Posted 2/24/2012 10:00 PM (GMT -6)   
WOW! 2.5 inches. Yep I can see why this would suffer trauma from rubbing against the part where the bag and wafer connect. I was asking a neighbor of mine why my doc did not make mine longer as I was only at 99 lbs at the time and I would gain weight, that was the point of the surgery. She said maybe it was because he didn't want it to get bumped.

I think 80'schick has a half inch stoma too. I will wait and see if she responds.

Thanks for info. I can well imagine you get no skin burns with it out that far.

Rosemary

ENIGMAWRAP
Regular Member


Date Joined Nov 2010
Total Posts : 346
   Posted 2/25/2012 3:40 AM (GMT -6)   
esoR:

I don't know if my stoma sticks out 2.5"! But, it is definitely at least 1/2" and maybe 1" long.

Now that i've had it for almost a year, I kinda wish it was shorter by about 1/8"... it sticks out to the point where it does affect my clothing..its not that I ever really liked tight jeans...but, with this now, I probably won't ever wear tight jeans again...

I read about folks on here whose stoma is right near the skin..and, have read the posts about leaks and stuff..but, they seem to have gotten those under control...I really haven't had a leak problem with my stoma sticking out at least 1/2", but it does affect the clothing I wear..and, I'm reminded I have a stoma when "running" into something and tagging it...

Anyway, to answer your question..I wear flat wafers.no need for convex...

Another UC wife
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Date Joined Jun 2007
Total Posts : 2111
   Posted 2/25/2012 7:37 AM (GMT -6)   
My husband's is kind of flat..when you put the wafer over it, it does protrude a bit but he does use a wafer with light convexity.  It must protrude enough for him as he is not having any kind of leaking problems or having the output erode the wafer.  He changes every Wed and Sunday.  He can go for a week if need be but prefers to keep this schedule as his skin is doing so well with this time frame.
 
I was initially concerned after reading the forum as I thought it didn't protrude enough.  The surgeon did have a difficult time forming his stoma which was indicated in the detailed operative notes which we also asked him about after the surgery.  But, so far so good it seems.

mom2panda
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Date Joined Oct 2009
Total Posts : 713
   Posted 2/25/2012 12:14 PM (GMT -6)   
about an inch. It's perfect. No leaks other than one due to operator error :D.
F/42 • ON, CAN • UC Dx Sep/09- 50cm (far as flex went)
Sub-total Colectomy with end-ileo & rectum remaining, Nov. 16/11
J-pouch - undecided

FAILED: 5-ASA • Imuran • Remicade • SCD, VSL, other diets • budesonide enemas/suppos, cortifoam • F-transplant • Pred dependent

uc_free
Veteran Member


Date Joined May 2007
Total Posts : 645
   Posted 2/25/2012 12:23 PM (GMT -6)   
Tell me about it. Even the nurses at the hospital were giving me looks when they saw it. The surgeon said yesterday, "I don't know why the heck he [the original surgeon] made it so long." LOL! I pounced on his comment and said, "I have been wondering the same thing since I had it done."

He said he'll fix it as soon as the pyo clears up. It is very simple, same day surgery.
Diagnosed with pancolitis in 1998
Tried everything but Remicade over a 14 year period and Imuran was really the only drug that worked before it stopped in 2010
Flared for a year and a half before spiraling out of control
Proctocolectomy with permanent ileostomy 11/29/11
Finally on the road to recovery

allbluezoo
Regular Member


Date Joined Feb 2012
Total Posts : 446
   Posted 2/25/2012 1:09 PM (GMT -6)   
I have no clue but I will measure the next time I am "naked". I do know that she (Stella the stoma) contracts when output is on its way but only on the bottom, the top part of the stoma remains the same. This causes my problems b/c if I am off the slightest bit on placement of my pouch or on how I cut the barrier then output gets on my skin just below the stoma and of course can get completely under the wafer and cause me to have a blowout.

I have read about the eakin seals and it seems to work wonders for those who talk about it. I have a handful of samples of the regular and the slim and I want to try them out but I am hesitant to do so right now as I have the abcess to deal with which is just below my stoma making it difficult to fit the eakin seal correctly. I really want to get it on though b/c so many people said that it was an accelerant in healing their "burns". However, right now I am have to change pouches every other day in order to get to the abcess and repack it and I read how STICKY the eakin seal is and I am afraid it would do more harm than good right now.

I have been using the Hollister barrier ring in the meantime and I am happy with the results - my accidents are always my fault; super thick output that pancakes and pops it off. Also, the fact that I just don't have the territory to afix a pouch completely really sucks too.

Can we post pictures in here somehow? My nurse took pictures of my abdominal wound 1 week apart to show the progress. Also I have a pic of my abdomen the day after surgery and I was going to take a new pic of what it looks like now. I figure this is the only place where anyone would be interested in seeing that kind of stuff and also I find that pictures help me understand more of what somene is saying (or typing, LOL!).

B'Dereh
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Date Joined Jun 2011
Total Posts : 1912
   Posted 2/25/2012 2:19 PM (GMT -6)   
I've had my loop stoma since Dec. 16th. Very often when I change, it is huge, vertically oval, and nearly two inches long. It sticks out about 2/3 of an inch. But there are other times, mainly this week when I've been home with bronchitus and eating very little, when it was tiny, round, not an entire inch in diameter and barely sticking out. I know this is because of the peristaltic, but it is odd because while I know I can't cut the wafer much larger than the stoma, I know that the stoma will get that large over the course of the day. It seems to work fine if I just cut them all the same for when the stoma gets huge, put an eaken around the cut edges and push it down into a cuff so itt akes up some of the extra space. I haven't had any leakages and the eaken is pretty good at keeping output off the skin.
UC Dx and then 7 years of no symtoms. But when they started, they didn't let up, ASA stopped working, pred stopped working, and azathioprin did nothing. The threat of much more radical drugs, plus the fact that a stricture was about to shut down my colon, led to my decision for a total colectomy in April 2011, 2nd step December 2011 and take-down probably in March 2012.

polishdan
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Date Joined Mar 2010
Total Posts : 1458
   Posted 2/25/2012 2:39 PM (GMT -6)   
colitis_sux
After my colectomy my stoma was prolapsed out about 2 1/2". I could not keep the bottom of my stoma healed. It was always raw and hurt like he##. My surgeon said "I can fix it". Well he did and it was good until everything healed. Then it was retracted and I could not get a flat wafer to stick. Then he said "I can fix it". So he did and it was good until everything healed. Retracted again. I now use a convatec durahesive convex wafer and Friars. No leaks even after 8 days.
 
I hope you have better results than I did.
 
Dan

esoR
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Date Joined Jan 2007
Total Posts : 4147
   Posted 2/25/2012 2:47 PM (GMT -6)   
I had heard that redoing stomas was not all that easy.

Interesting how many variances there are in stomas. That really long one would be a curse. The flat ones would be a curse but you guys are great and dealing with whatever. B'D that one would have my brain twirling around in my head :-) LOL

I would like that one-inch long one with no issues. If we got to pick a stoma that would be the one I would pick :-)

Dan, MY BURN IS BACK AUUUUUGH! I had it all cleared with the hollister convexity and stomahesive paste.

Dan, I have that FRIARS tincture compound sitting right on my shelf staring me right in the face and I don't dare use it!!!!!!!!!!

SO YOU SAID.....when the Friar's first goes on it really stings. BUT THEN.........the sting stops??? AND by the next change the burn is healed?????

Is this what you said Dan, Rosemary

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 2/25/2012 2:51 PM (GMT -6)   
colitis sux,

I feel for you with that long stoma. I can see why the nurses were looking. Let me know how your doc is going to shorten it in a simple surgery. I would never dare have a stoma revision to make mine stick out more spout like I will just have to lose the weight. But I am curious as to how these are done. Rosemary

esoR
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Date Joined Jan 2007
Total Posts : 4147
   Posted 2/25/2012 2:55 PM (GMT -6)   
Allblue, The eakins were perfect with me for the longest time. BUT then they started NOT sticking.

As you have that absess I can see your concerns. A friend of mine said on her the eakin stuck TOO MUCH and made her skin all red. So much of this depends on skin type. The Hollister Adapt barrier rings do this on me, they stuck like tar to a test patch on my skin on the opposite side from the stoma. If I had ever stuck one of those around my stoma it would still be there and that was a month ago I did the test patch. Allblue, you could put an eakin on the other side of your stomach and see how it agrees (or not) with you.

As a group it would be something if we could come up with the "perfect ostomy product" but likely what would be perfect for one would not be for another. And on it goes.

The wind is howling here like crazy. I have to get out and get some exercise. BUT I GOTTA BUNDLE. See ya all later. Rosemary

esoR
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Date Joined Jan 2007
Total Posts : 4147
   Posted 2/25/2012 2:57 PM (GMT -6)   
Dan, I love how your doc kept saying "I can fix it" "I can fix it" "I can fix it". If all this was not so serious it would be comical. Rosemary

Cleos
Regular Member


Date Joined Jan 2011
Total Posts : 38
   Posted 2/25/2012 5:45 PM (GMT -6)   
My Stoma stick out about 1 inch, had it since September last year, sometimes though it can retract to skin level.
 
Came home with the dreadful Hollister bags, got rid of them real quick, then changed to a one piece Coloplast, flat base. Seemed ok for awhile, but had to add eakin seals, that became a nightmare, getting all of the glue off when changing. Then I had problems with major leakages at night, so decided to give Dansac a go.
 
So now I wear one piece Dansac, with a convexity, no seals needed. I can even add cream or that white powder to my stoma if it looks a bit sore, without wiping it off. The glue on the Dansac one piece is great, it will stick to cream or powder, and is easier to come off, when changing.
 
Cleo

uc_free
Veteran Member


Date Joined May 2007
Total Posts : 645
   Posted 2/25/2012 6:47 PM (GMT -6)   
LOL - Funny story about my stoma.

So, I was advised to go to the ER and there was met by an infectious disease specialist to look at my pyoderma. We didn't know it was pyoderma at the time; thought it was a bad infection. Anyway, the infectious guy was so interested in the pyo that he asked if he could take a picture of it for his future records. He and the ER doc had already gotten past the long stoma, so it was all about the pyo at that point.

Later on, from my room, I hear him talking to another ER staff person, and he showed him the picture of the pyoderma gangrenosum. He didn't know what it was, so he didn't say what it was. Next, I hear the following conversation:

"What the is that????" - - other person

"That's the infection I was just talking about." - - Infectious Doc

"No, I mean that other thing next to it."

"Oh . . . That's the patient's stoma."

I had to laugh. I don't even want to know what he thought it was out of the context of the rest of my body, LMBO!!!

Sometimes if you don't laugh you'll cry.

Apparently, the new CR surgeon did say it is easy to fix. He is the chief of surgery at Mt. Sinai, which is the best hospital for this sort of thing on the east coast, so I do want to believe him. As for my hernia, he said that's a lot more complicated, and since I know that's true, I want to believe him about the stoma.

Either way I am fine. I don't particularly like the length, but I'd prefer that to leaks and a million skin problems any day. Also, it never prolapsed. This is the way my original CR designed it, believe it or not.
Diagnosed with pancolitis in 1998
Tried everything but Remicade over a 14 year period and Imuran was really the only drug that worked before it stopped in 2010
Flared for a year and a half before spiraling out of control
Proctocolectomy with permanent ileostomy 11/29/11
Finally on the road to recovery

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 2/25/2012 7:00 PM (GMT -6)   
colitis_sux

FUNNY ER STORY! OMG! What the heck did the other person think your stoma was???????? What a RIOT!

So, Mt. Sinai in NYC? Sounds like they know their stuff. Rosemary

uc_free
Veteran Member


Date Joined May 2007
Total Posts : 645
   Posted 2/25/2012 7:08 PM (GMT -6)   
LOL! I can only imagine what he thought it was - it has given me laughs ever since.

Yes, Mt. Sinai in NYC. My surgeon even did his residency at the Cleveland Clinic so he has experience there as well.
Diagnosed with pancolitis in 1998
Tried everything but Remicade over a 14 year period and Imuran was really the only drug that worked before it stopped in 2010
Flared for a year and a half before spiraling out of control
Proctocolectomy with permanent ileostomy 11/29/11
Finally on the road to recovery

Blueheron
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Date Joined Feb 2010
Total Posts : 704
   Posted 2/25/2012 7:09 PM (GMT -6)   
My stoma is about 1 1/2 inches tall. Sometimes it gets a little bit longer during peristalsis, but it never gets any shorter. Colitis_sux- mine flops downward too and never stands straight up... which is good in some ways because it is not that visible under my clothing. It also overlaps where the pouch and wafer attach. I never get any trauma to my stoma from that though. I actually like having a longer stoma as it points down and directs stool towards the bottom of my pouch. I have not had any leaks in the 15 months since surgery (except for one right after surgery due to wound drainage getting under my wafer). I also don't have serious skin issues. I asked my surgeon for a longish stoma as I had heard flush ones could be hard to manage and he said that was the way he liked to create them too. I am really happy with how mine turned out.
-39 years old
-Officially diagnosed with UC in 2006, symptoms since 1999
-Took Asacol, Rowasa, Canasa and various rounds of Prednisone, tried 1 dose of Remicade but had excruciating joint pain and discontinued
-Had mild/moderate UC continuously until severe flare in autumn 2010 which led to permanent ileostomy surgery 11/8/201
-Visit my blog at http://ostomyoutdoors.wordpress.com/

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 2/25/2012 7:18 PM (GMT -6)   
Blue, Wow I did not even know to ask my surgeon to make it such and such a length; I was in too rough shape at the time to even think of that. Good for you for asking. That is how they are supposed to be pretty much spout like and aiming the stool into the bottom of the bag.

has your weight changed since you got your ileo?

Rosemary

Blueheron
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Date Joined Feb 2010
Total Posts : 704
   Posted 2/25/2012 8:41 PM (GMT -6)   
Rosemary,

Yeah... I tend to be a planner so I did a lot of research on it. I knew I wanted a permanent ostomy and wanted to stack all the odds in my favor as far as getting a good stoma. I was lucky in that I had a month in between when I finally left the hospital and had my surgery to get a lot of information. The GI nurse practitioner I had worked with for several years when I was sick with UC happened to know a lot about ostomies. She told me to make sure not to get a flush stoma and to ask my surgeon for one that was at least an inch long. When researching on the internet I also saw lots of recommendations for stomas in the 2-3 cm range. It was funny because when I found this out, I had already had my surgical consult a couple of weeks before. Therefore, I brought up the stoma length topic with my surgeon right in pre-op, minutes before my surgery. I remember being a little nervous asking such an expert to please not make my stoma too short:) I was so happy when I woke up and saw my stoma was the length I wanted! I know those who end up getting their stomas in emergency situations do not always have the advantage of providing such input into length and location.

I have only gained a pound or two since surgery and I think it has mainly been muscle since I was pretty thin and a bit malnourished going in. My belly looks the same as when I had my operation.
-39 years old
-Officially diagnosed with UC in 2006, symptoms since 1999
-Took Asacol, Rowasa, Canasa and various rounds of Prednisone, tried 1 dose of Remicade but had excruciating joint pain and discontinued
-Had mild/moderate UC continuously until severe flare in autumn 2010 which led to permanent ileostomy surgery 11/8/201
-Visit my blog at http://ostomyoutdoors.wordpress.com/

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 2/25/2012 9:09 PM (GMT -6)   
Blueheron,

You were really lucky that you had worked with a nurse that told you all about ostomies. Sounds like you were in the right place at the right time. The fact that you have only gained a couple pounds makes it all the better. Good for you. I hope if I can continue to knock off more of the weight I've gained that I can have my stoma stick out enough so that poop will go right into the bag as it did when it was new. I was down to 99 lbs and lost the use of my rectum and colon and for 13 months the use of my small bowel all due to severe adhesions from a GYN surgery (that later I found out was not needed). As I was unable to eat for that long while looking for help, I lost 1/4 of my body weight. When I finally did find help, 11 surgeons & 7 hospitals later, our main focus was the release of my small intestine from the dense adhesions, Seprafilm adhesion barrier and the creation of my stoma. The stoma part was at that time the least of it. Took the doc 4 hours to lyse the adhesions. So I never thought to say "bring that stoma out about an inch" sure wish I had but I think I was so hungry all I wanted to do was be able to eat again. So mine was emergency in another sense of the word. Thanks for sharing your story. Good thing you asked about him making the stoma longer. Rosemary

uc_free
Veteran Member


Date Joined May 2007
Total Posts : 645
   Posted 2/26/2012 4:00 PM (GMT -6)   
Now I am wondering if I should get mine shortened?? I'd rather not have leakage, and so far that aspect of things is going swimmingly.
Diagnosed with pancolitis in 1998
Tried everything but Remicade over a 14 year period and Imuran was really the only drug that worked before it stopped in 2010
Flared for a year and a half before spiraling out of control
Proctocolectomy with permanent ileostomy 11/29/11
Finally on the road to recovery

Blueheron
Veteran Member


Date Joined Feb 2010
Total Posts : 704
   Posted 2/26/2012 4:40 PM (GMT -6)   
Colitis_sux- I would talk to your surgeon. Especially since your stoma suffers trauma from the length. See what he/she thinks the pros and cons are. My 1.5 inch stoma is 1 inch shorter than yours, so trauma is not something I have had to deal with. I would definitely think about changing it carefully though. You would hate to get it changed and then deal with other problems that are worse. I remember when my stoma nurse saw mine after surgery she said it was slightly longer than average but that was much better than having one that was too short and causing blow-outs all the time. One other thought... have you tried the adhesive coupling pouches. I tried them and wasn't a huge fan, but there would be nothing for your stoma to rub against as they are nice and flat where the two pieces join.
-39 years old
-Officially diagnosed with UC in 2006, symptoms since 1999
-Took Asacol, Rowasa, Canasa and various rounds of Prednisone, tried 1 dose of Remicade but had excruciating joint pain and discontinued
-Had mild/moderate UC continuously until severe flare in autumn 2010 which led to permanent ileostomy surgery 11/8/201
-Visit my blog at http://ostomyoutdoors.wordpress.com/

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 2/26/2012 8:20 PM (GMT -6)   
colitis,
yeah I would talk to my surgeon if I were you and see what they think. As BLue says above hers is a whole inch shorter than yours. Today I saw some extension type ring that goes between the bag and the wafer that maybe you could try. I forget what they called it, but it could be what blue refers to above. That way the bag will not be irritating and touching your stoma while you decide. Go ahead and kick the idea around with your surgeon. We here are all just bouncing ideas back and forth to problem solve. BUT as you can see stomas that are too short sure do bring a host of issues, but those too can be dealt with. I think it all boils down to the lesser of the evils. If not one thing, then it's another......and the beat goes on. Rosemary
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