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Chasblah
Veteran Member


Date Joined Feb 2007
Total Posts : 788
   Posted 9/27/2010 1:06 AM (GMT -6)   
this is making me nervous.

My stoma is so retracted, that it's only a tiny little dot. the rest has gone under the skin. this just happened yesterday. It's normally an inch, and has been that way for a year. but now, it's barely 1/2 in.
I think I covered the bottom up a bit with my last appliance, and when i noticed it yesterday, i put on a new one, using an eakin seal. i cut the hole very big, but it retracted even further, I think it was b/c the seal was irritating it too.
So, i put on another appliance, using paste this time, but it hasn't popped back out yet. it's been about 6 hrs since the last appliance was applied.
It is hurting a bit, only slightly, though. like it's mad. and I'm feeling nauseated, but not that bad. I'm having lots of normal output and the tiny part that you can see looks ok. There is a bit more bleeding.

Should i be worried, because I am. ESPECIALLY now that I have a bun in the oven (i think this is going to be a LONG 9 months)
Chassity
29 yrs. old. married with one beautiful daughter (born 11/20/07)
-diagnosed with severe pancolitis u/c 2002 had total colectomy 12/19/08; emergency surgery due to abscess-had to redo ileostomy and switch to left side 12/25/08; 2/15/09 found blood clot in superior mesenteric vein (prob. from inf. and surgery inflammation)
i only take vitamins now, when I WANT to. :)
(temporary ileostomy)

Hopeso
Regular Member


Date Joined Jun 2004
Total Posts : 231
   Posted 9/27/2010 9:16 AM (GMT -6)   
Hi Chas,
Congrats on the bun in the oven!  I bet that has something to do with the stoma being pulled in a bit, but I don't know for sure.  I am sure you will get advice on this one, but I have never been preggers with a bag.  I do remember being pregnant did something to my navel, so maybe it will effect the stoma, but it should be ok afterwards.  Have you called the doc yet?  Take care,
Leslie in KC North

80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 9/27/2010 6:40 PM (GMT -6)   
How far along are you? I'm betting that has something to do with it.
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). 

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 9/27/2010 7:32 PM (GMT -6)   
That is weird. shocked I would call your colorectal surgeon to let them know. Congrats on being preggers!! :-)
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.

Chasblah
Veteran Member


Date Joined Feb 2007
Total Posts : 788
   Posted 9/27/2010 7:57 PM (GMT -6)   
No. it's not my pregnancy. I'm only 5 weeks. Just barely.

It's looking a bit better. Idonwanna call my surgeon. shakehead
I really like him, but i'm just tired of going to see him. I'm going to wait it out, and hope it gets better. If it doesn't, I will call him.
but, he will make me have an exam and take off my appliance. ugh. it's always messy.

jackarat
Regular Member


Date Joined May 2009
Total Posts : 29
   Posted 9/27/2010 11:16 PM (GMT -6)   
congratulations,
when my stoma done the dissappearing act it was because i was dehydrated
good luck

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 9/28/2010 6:38 PM (GMT -6)   
Have you eaten a lot of fiber recently? If I eat too much of it mine will pull back but it doesn't stay that way...I'd call the doc!
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!

Chasblah
Veteran Member


Date Joined Feb 2007
Total Posts : 788
   Posted 9/29/2010 9:31 AM (GMT -6)   
not fiber. I really think it was b/c the appliance was too small a few days ago. Then, everything just irritated it. And those Eakin seals I was using, it really did not like those. I know, b/c I changed my appliance and cut the hole really big and put paste on it. When it started looking a little better, I put a better appliance on, with a better fit, and put on an Eakin seal. I put the seal right up to the stoma, to hug it, like the paste does. When I did that, it shrunk away from it again, after a few hrs, It was retracted under the skin again! So I cut another appliance with a big hole, again, put on paste, and it started looking better again. So I tried the seals one more time. Same thing.
I won't be using the seals again. I don't get it.
Oh well. I'll just stick with paste.
Chassity
29 yrs. old. married with one beautiful daughter (born 11/20/07)
-diagnosed with severe pancolitis u/c 2002 had total colectomy 12/19/08; emergency surgery due to abscess-had to redo ileostomy and switch to left side 12/25/08; 2/15/09 found blood clot in superior mesenteric vein (prob. from inf. and surgery inflammation)
i only take vitamins now, when I WANT to. :)
(temporary ileostomy)

RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 10/2/2010 9:50 PM (GMT -6)   
You're having a baby?!?  How wonderful!!!!  smilewinkgrin    I am so happy for you guys!!  You'll have to let me know the fun things Elliott says about having a baby!
 
I don't have anything to add about your stoma...I've actually wished mine to retract a little...have you contacted an ostomy nurse?
 
Anyway, we definitely need to try planning something with our kiddos...hopefully I'll talk to you soon!
 
smurf  
: )  Robin
 
29 year old Mommy of an amazing 2 year old and Wife for 3 years!
Dx-May 2007 Moderate/Severe Pancolitis - failed all medications
Proctocolectomy w/ permanent ileostomy on 02/06/09!!!
 
"Your mind is like a parachute, it only works when it is open."  -Unknown

polishdan
Veteran Member


Date Joined Mar 2010
Total Posts : 1595
   Posted 10/3/2010 8:38 PM (GMT -6)   
I don't think it is unusual to have a retracted stoma. Mine is most of the time. I just started using Hollister convex seals #79520. Comes in three sizes. It swells up after a couple days and really seals. It comes off clean, unlike the Eakin seals. Call Hollister for samples 888 740 8999.


Dan
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