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J's Mom
Regular Member


Date Joined Oct 2008
Total Posts : 109
   Posted 2/16/2010 10:36 PM (GMT -6)   
 My handicapped son has had his ileostomy for about 18 months now. I know (and have seen) his stoma change sizes. Normally it protrudes about 1/2" or so. On occasion I have seen it retract almost to skin level. However, tonight it was REALLY big. I mean about 3x the normal size. Really freaked me out. He had been playing and being really active. Once he settled down it went back to normal size. Is this normal??????
He acts fine and output seems normal. But he can't tell me if something hurts and has a really high pain tolerance. He suffered through severe UC for over a year and then had an obstruction 6 mos after his colectomy and doctors were amazed at how well he tolerated the pain he must have been having.
Please help calm this nervous mom.

RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 2/16/2010 11:39 PM (GMT -6)   

Wow...your poor baby...and poor Mommy!  I really don't know what to tell you about the stoma size changing.  Mine is actually over an inch from my tummy and it's gets uglier by the day...bumps, ripples...gag.  wink   I'm glad he seems to be doing better now, since he was playing and being active!

It is with my experience that if there is pain my tummy sometimes seems a little bloated, and there is a change with the output. 

I think it's wonderful that you're here asking questions so you can be the best Mommy to your son...if there was a heart icon I'd use that smilewinkgrin

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


Shaz032
Forum Moderator


Date Joined Feb 2003
Total Posts : 1246
   Posted 2/17/2010 5:00 AM (GMT -6)   
Was it big circumference wise or longer lengthwise?

If longer, it sounds as though his stoma prolapsed a little. Imagine a sock rolled back on itself once (it's basically how a stoma is con. Now, if you pull the inside middle out of the folded end, the sock becomes longer. This is what happens in a stoma prolapse. It's not dangerous and doesn't hurt, but can be annoying esp if it interferes with bag adhesion. Usually it will go back into place on it's own, if not, sprinkle some brown sugar on it (sounds weird I know, but it works) and it should go back to it's normal size.

Normally, nothing is done in the case of a prolapse unless it is interfering with adhesion in which case, a simple surgery securing the stoma properly to the tummy wall is usually all that's needed.

If it's bigger circumference wise, that could be due to something as simple as coughing. Just cut the hole in his wafer a little bigger to accommodate it and it should go down within 2 - 3 days. If it doesn't, then see his stoma nurse.
Ileostomy for 33 years due to UC

Moderator of the Ostomy and Psoriasis Forums

_______________________________________________

I'm not a complete idiot - some parts of me are missing!


J's Mom
Regular Member


Date Joined Oct 2008
Total Posts : 109
   Posted 2/17/2010 7:39 AM (GMT -6)   
Thanks for the reponses. It was bigger in circumference. It did immediately go back down once he quit being so active. Guess I will try to chill and just keep an eye on it. It probably has happened before, but I have not seen it.
It is difficult when he can't tell me what he feels. I am always afraid I will miss something. Guess I have done pretty good since he was suppose to not survive at birth and he is 21 years old:)

RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 2/17/2010 9:18 AM (GMT -6)   

That's even more amazing!  I have a cousin that survived those same odds and she is such an inspiration to our family!  I love it when children grow up and show the medical field just what a detemined little soul can do!

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


vette guy
Veteran Member


Date Joined Nov 2006
Total Posts : 650
   Posted 2/17/2010 12:35 PM (GMT -6)   
My stoma changes appearance on a regular basis.  Though,  I'd still mention it to your son's doctor, I wouldn't miss any sleep over it! 

Trigirl
Veteran Member


Date Joined Jan 2006
Total Posts : 768
   Posted 2/17/2010 12:41 PM (GMT -6)   
Mine is always making guess what it is doing. It never hurts to have it checked. Bless you both as you work out the new challenges.
This heights by great men reached and kept, were not obtained by sudden flight, but they while their companions slept, were toiling upward in the night.
H.W. Longfellow
Thyroid cancer removed 1988
Stomach problems finally figured out 2001 Crohn's/Colitus
Tried every drug without much success
Colon/rectal cancer removed Aug 2009
Trying

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