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2b ColonFree
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Date Joined Nov 2008
Total Posts : 2603
   Posted 8/1/2010 6:49 AM (GMT -6)   
hello all,
 
i have a question about the shape of the stoma, i have a loop ileostomy (surgery 3 weeks ago). at first the stoma looked round, but the last time i changed my wafer (3 days ago) i noticed that my stoma is elliptic, not round, and that the hole is at the top of the ellipse. does anyone know whether loop ileostomies are supposed to be elliptic and the end ones are more round?
 
it's just that it's kind of anoying, since the hole is at the top, there's always quite a bit amount of stools at the top of my bag that always get stuck there and just stays there :/  maybe if the stoma is round and the hole is in the middle, it won't happen? is there anyone else with a loop ileostomy and it's like that for you too? is that how it's supposed to be?
 
thanks for any responses :-)

Hodaya

06/05/2007 - STARR procedure

colonic inertia w/pelvic floor dysfunction

08/16/2009 - total colectomy w/ileorectal anastomosis

07/08/2010 - loop ileostomy


NewShinyCD
Regular Member


Date Joined Oct 2009
Total Posts : 474
   Posted 8/1/2010 8:21 AM (GMT -6)   
Yea it's normal for loop ileos to be oval or some other odd shape. Mine used to look perfectly round when I had the bridge thing under it. Then when they took that out it started getting more oval shaped. Now it looks like a finger that sticks out o_O
21 y/o male livin' in Georgia. Diagnosed with Left-Sided Colitis in 2002; re-diagnosed with Pancolitis in Nov. 2009.
June 2010 I beat UC by having surgery.
Drugs tried: Just about every 5ASA medicine, enemas, prednisone, turmeric, fish oil, Remicade, psyllium seed powder, Metamucil.
Unable to take 6MP.
Step one of Jpouch surgery - 6/2/2010
Readmitted back to hospital because of blockage (my fault cause I ate Steak n Shake 3 days after being released from surgery) - 6/10/2010
Step two of Jpouch surgery - 9/?/2010

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 8/1/2010 8:51 AM (GMT -6)   
thanks. but you know what..? i just changed my wafer again, cuz it was peeling too much and if i'm not mistaken, i think my stoma has 2 holes to it....!!!!! holy crap... could that be possible??????

mmm... i now also noticed there are 2 small blisters right next to the stoma :( does anyone has any advise what i should do about that? maybe i should call the stoma nurse.

Hodaya

06/05/2007 - STARR procedure

colonic inertia w/pelvic floor dysfunction

08/16/2009 - total colectomy w/ileorectal anastomosis

07/08/2010 - loop ileostomy


NewShinyCD
Regular Member


Date Joined Oct 2009
Total Posts : 474
   Posted 8/1/2010 10:06 AM (GMT -6)   
Oh yea, I forgot to mention that too, but I'd figured you know. Anyway loop ileos have two holes, one is the "normal" exit and the other leads down to the j-pouch.

As for the blisters, see if your ostomy nurse has any eakin seals instead of paste. You don't have to use much of the seal, I only use about a 1/4th. When I cut the hole for the stoma I cut it just big enough for the stoma to fit though, then I take the piece of the eakin seal, roll it up to a snake like think then I put it around the hole. When you put the wafer on you shouldn't be able to see any skin around the stoma.
The stoma powder you put on the irritated skin and dust/blow off the excess. The eakin seal should cover this up. You can use a skin prep over top of the powder, but I prefer not to cause the eakin seal sits on top of the irritated skin.

My ostomy nurse would always measure slightly bigger than the stoma, which caused the stool to eat away at the paste and then my skin. I dunno why she said not to cut the hole just big enough to fit. I'm thinking it was because at first the loop ileo is still swollen and cutting it just for the stoma to fit could cause a blockage if the stoma swelled up bigger.
21 y/o male livin' in Georgia. Diagnosed with Left-Sided Colitis in 2002; re-diagnosed with Pancolitis in Nov. 2009.
June 2010 I beat UC by having surgery.
Drugs tried: Just about every 5ASA medicine, enemas, prednisone, turmeric, fish oil, Remicade, psyllium seed powder, Metamucil.
Unable to take 6MP.
Step one of Jpouch surgery - 6/2/2010
Readmitted back to hospital because of blockage (my fault cause I ate Steak n Shake 3 days after being released from surgery) - 6/10/2010
Step two of Jpouch surgery - 9/?/2010

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 8/1/2010 12:36 PM (GMT -6)   
thanks, yeah, that's exactly what happens to me too, the stool eats away the paste and then my skin, it's frustrating :( so with the eakin seal this will not happen? it protects the skin better?

Hodaya

06/05/2007 - STARR procedure

colonic inertia w/pelvic floor dysfunction

08/16/2009 - total colectomy w/ileorectal anastomosis

07/08/2010 - loop ileostomy


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 8/1/2010 1:15 PM (GMT -6)   
Hodaya,

Mine has two holes, too. I don't know why, but it does. You should let your stoma nurse know about the blisters, because she can bring you some powder that will clear those up. Also, ask her if she has some Adapt lubricating deodorizer. That will keep everything from collecting up at the top. Eakin Seals do protect the skin by keeping the output from getting on the skin. I know it's a lot to learn, but you're doing great! :-)

Cecilia
Dx'd Crohn's in '99 at age 28. Proctocolectomy and permanent ileostomy in '06.
Disease-free and medicine-free since surgery and very thankful to be healthy again.

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 8/1/2010 1:42 PM (GMT -6)   
oh thanks my dear Cecilia :) yeah i'm trying my best to learn and know all about it. i just spoke to my internist couple hrs ago, i'm seeing him tomorrow at 10:00 am so i'll ask to order the eakin seal and the deodorizer. thank you both so much for all your info and advice!

just curuise, i noticed few days ago someone on this board mentioned how all the stoma equipment is expensive, does that mean you guys in the states have to pay for the stoma equipment outta pocket???? over here we don't pay a dime for it, the social med care covers all the expenses. it's horrible if you guys have to pay for it, if i had to pay for it my self, i wouldn't have had any money left to live..... so how does it work for you all?

Hodaya

06/05/2007 - STARR procedure

colonic inertia w/pelvic floor dysfunction

08/16/2009 - total colectomy w/ileorectal anastomosis

07/08/2010 - loop ileostomy


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 8/1/2010 2:10 PM (GMT -6)   
Hodaya~when your stoma settles down, the hole should not be next to your skin at the top...there should be at least a 1/2 inch (I think that's 1.25cm?) so the waste leaves the stoma and can go into the pouch. If you have issues with you stoma...DO NOT just live in pain or discomfort...your surgeon can do a revision to make it work properly! Sometimes stomas have minds of their own and need to be adjusted shocked

In the USA most insurance companies cover ostomy supplies...if the patient doesn't have coverage, or the insurance doesn't cover the supplies, they can request free supplies from many organizations that help. If they don't qualify, they do have to purchase supplies, and there are many companies that have low cost for the same stuff the insurance company gets charged a lot forskull

Cecilia~do you have an End Loop Ileo, too? That's what I have and sometimes it drives me nuts but it is supposed to be 'more stable' than a regular end...jury is still out on that one!
Crohn’s dx 1989
some terrible years before my
Proctocolectomy in 2008

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 8/2/2010 4:10 AM (GMT -6)   
thanks OHIO. i hope it works like you say. now you got me confused... i know there's an end ileo, loop ileo, but... what in the world is an end loop ileo..???? confused LOL so confusing

Hodaya

06/05/2007 - STARR procedure

colonic inertia w/pelvic floor dysfunction

08/16/2009 - total colectomy w/ileorectal anastomosis

07/08/2010 - loop ileostomy


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 8/2/2010 5:08 AM (GMT -6)   
I KNOW!! just when you think you know this stuff, something else comes up, but boy do we learn a lot here!

An End Loop Ileo is not connected to your colon (mine was removed) but it has 2 holes, top one empties waste and the lower one does nothing, and there is a little 'tail' that is sewn shut below the stoma but it doesn't go anywhere.
Crohn’s dx 1989
some terrible years before my
Proctocolectomy in 2008

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 8/2/2010 7:42 AM (GMT -6)   
wow that sounds exactly like mine..... maybe that's what I have too, and i don't even know it...???? cause i do see there are 2 holes, the top one is where the stools is coming out and the lower one does nothing AND there's seems to be a tail like you're describing. MY GOSH this is confusing, i'm not even sure any more what is it that i have...

Hodaya

06/05/2007 - STARR procedure

colonic inertia w/pelvic floor dysfunction

08/16/2009 - total colectomy w/ileorectal anastomosis

07/08/2010 - loop ileostomy


2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 8/2/2010 9:50 AM (GMT -6)   
i'm SO furious with my dr for not explaining things to me!!!! in israel drs don't explain anything to you, SO FURIOUSING!!!! my sis lives in the states and she sais your drs explain every detail to you, but you pay much more than we do, so that explains the better treatment you guys have from drs than we have. i'm just so sick of my drs!!

Hodaya

06/05/2007 - STARR procedure

colonic inertia w/pelvic floor dysfunction

08/16/2009 - total colectomy w/ileorectal anastomosis

07/08/2010 - loop ileostomy


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 8/2/2010 4:01 PM (GMT -6)   
Don't feel bad, Hodaya, my doctors didn't explain anything to me either, because I have no idea what kind of ileostomy I have! It must be an end loop ileo... so, thanks, Anne! I've learned so much more from you all here than from my doctors! smilewinkgrin
Dx'd Crohn's in '99 at age 28. Proctocolectomy and permanent ileostomy in '06.
Disease-free and medicine-free since surgery and very thankful to be healthy again.

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 8/2/2010 7:37 PM (GMT -6)   
Hodaya~don't get mad, YET!! Yours is temporary, right? My guess is it is a Temporary Loop Ileo...they have two holes, too, and you could be reconnected, right? If you can I'm gonna guess it's a regular loop ileo:)
Crohn’s dx 1989
some terrible years before my
Proctocolectomy in 2008

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 8/3/2010 12:03 AM (GMT -6)   
thanks you guys. oh well... i'm ok, i think.... just so sick of drs being so rude and arrogant, i mean even the plumber when he comes to fix the plumbing he explains EVERYTHING to you, every detail..... but drs, they work on our BODIES, which is much more important, isn't it? and they just don't make the minimal effort to explain what's going on with OUR BODIES, too unacceptable! just can't help my self not being FURIOUS at them!!!! but hey, it's ok, i'm cool.... i sent my surgoen this question in his forum, asking properly and gracefully to just explain to me why my stoma has 2 holes and what kind of a stoma is it exactly that i have.

you're so right Cecilia, like you, all my knowlege, everything i know is thanks to this site and the wonderful ppl on it, i don't know what i would have done w/o this site and i thank G-D for finding it and you all :) :)

OHIO, yes it's a temp one in case i didn't like it, i can be reconnected easily, so i guess you're right, most likely it's a regular loop ileo. but you know, i don't ever want to be reversed, i feel SO MUCH BETTER with the bag, i can't even express in words how better i feel with it, so for me it's definitely perm. but how should i do it? should i just leave it this way? or should i at some point change it to an end ileo (or is the end loop better..???) does the end ileo/end loop ileo works better? will i be more comfortable with those than with the regular loop? i mean now there still can be stools reaching the rectum and i have real trouble expelling stools from my rectum.... maybe it's best for me to have the rectum disconnected completely, so i won't have to worry about stools being stuck in there...????

there is a wonderful colorectal surgoen i know, that i can see only as a privat dr and have to pay lots to see him, but he REALLY EXPLAINS things to you (yeah, there are few, very few, diamonds like him here and there..), he's SO nice and empathetic and i wish he was my dr, but i can't afford him, but i can afford a consultation with him once in a while, so maybe i'll ask his opinion too about this.

thanks again guys, and sorry for all the rambling lol

Hodaya

06/05/2007 - STARR procedure

colonic inertia w/pelvic floor dysfunction

08/16/2009 - total colectomy w/ileorectal anastomosis

07/08/2010 - loop ileostomy


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 8/5/2010 5:13 AM (GMT -6)   
Hodaya,

My ileostomy started out as a temporary one, too, just in case I didn't like it. Well, it turned out that I loved it, so, 8 months later, I started bleeding from the rectum (since the Crohn's disease was still active). That's when I had my colon and rectum removed and kept the ileo the same. For me, keeping the colon and rectum in was causing problems, since they were diseased with Crohn's, so it was best to have them removed.

From what I understand, if you're feeling good and are not having any problems, you can keep your colon and rectum in and keep that same ileostomy. You would only have surgery to remove your colon and rectum if they were causing problems and making you sick. Hope that helps explain things a bit.

:-) Cecilia
Dx'd Crohn's in '99 at age 28. Proctocolectomy and permanent ileostomy in '06.
Disease-free and medicine-free since surgery and very thankful to be healthy again.

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 8/5/2010 7:50 AM (GMT -6)   
Cecilia,
i know, with crohn or colitis they have to remove both the colon and rectum. in my case there's no need to. i didn't mean to remove it, i meant to just disconect it, cuz as far as i understand it, the rectum is still connected and stools can still reach it. my problem is that my rectum can't expel the stools, it will just get stuck in there, unless i go to a nurse/dr to help me with their enama. so i was just thinking that maybe i'll just be more comfortable if the rectum is disconnected and the stools won't be able to enter it. my dr (and other drs i asked) say that i can have an end ileostomy, meaning the stoma will be made from the end of the small intestine and not from a loop, but also the rectum stays just where it is, only it will be totally disconnected.

i'm saying this, cuz i feel lots of pressure in my lower abd and it looks big and swollen too. i know it's mucus and maybe stools too, and i also know that there's no way i can get rid of it on my own. do you get the same pressure in your lower abd?

anyway, it's not like i'm gonna have surgery any time soon... if ever. i'll have to ask if it will really be worth it, then see what i do.

thanks for your reply :)

Hodaya

06/05/2007 - STARR procedure

colonic inertia w/pelvic floor dysfunction

08/16/2009 - total colectomy w/ileorectal anastomosis

07/08/2010 - loop ileostomy


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 8/5/2010 5:12 PM (GMT -6)   
Oh, now I understand! That makes sense that you would eventually want it disconnected. When I had a colon, I never felt bloated, because I had the opposite problem (chronic diarrhea).

I'm so glad you're happy with your ostomy. It sure beats spending hours in the bathroom! :-)

Hugs,
Cecilia
Dx'd Crohn's in '99 at age 28. Proctocolectomy and permanent ileostomy in '06.
Disease-free and medicine-free since surgery and very thankful to be healthy again.

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 8/6/2010 2:13 AM (GMT -6)   
thanks dear Cecilia :) yes i'm so very happy with my stomy, i love her! she's the most beautiful thing in the world to me!

the pressure in my lower abdomen is very uncomfotable :( and it's only intesifying as time goes by. i'll have to ask the stoma nurse if he can help me with that. mean time i need to make an appt to the nice surgeon who costs a lot, to ask his opinion about having it changed to a perm one, and wether it's worth it having more surgery. i SOOO dread having more surgery. but if it's only a small and simple procedure, then maybe it's worth it. will see.

(((hugs))) right back at you!

Hodaya

06/05/2007 - STARR procedure

colonic inertia w/pelvic floor dysfunction

08/16/2009 - total colectomy w/ileorectal anastomosis

07/08/2010 - loop ileostomy

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