nonverbal disabled daughter subtotal colectomy-severe pain!

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New Member

Date Joined Oct 2010
Total Posts : 3
   Posted 10/25/2010 9:51 PM (GMT -6)   
My daughter is 22 years old with multiple disabilities.
Down Syndrome, Autism, non-verbal, hypothyroidism, type1 diabetes etc.
She had a subtotal colectomy on Sept 17. Went home after 6 days and
was recovering wonderfully. Weaned her off of the hydrocodone after
two weeks. Follow up visit told the doctor she was going to the bathroom
on her own, and back to her normal schedule. Then three days ago, we
suffered some kind of set back. She can't verbalize but what she does
do in situations where she is in pain is has a bizarre type of behavior,
she isn't eating or sleeping. When I called the surgeon,  he sent us to the
ER to run a urinalysis, lab, xray and CT scan. Everything looked fine so
they sent us home. But she isn't fine, in her music therapy today she was able to
tell the therapist through pictures that she was angry and in pain. This is
from a girl who broke her leg and walked on it so she can tolerate pain. What
I'm talking about is extreme pain and I don't know why.
Contacted the surgeon's office again this morning and they didn't bother to
call back. My other daughter called and the nurse just was rude and said
the ER results were fine. This truly upset my daughter who then called my
disabled daughter's primary doctor who said he could admit her but if it
was related to the surgery no doctor would take her on if the problem
is related to the surgery. After much persistence from my daughter, the
surgeon finally called later this afternoon to have me try a suppository.
I've done two and there is nothing. He said I could call him tomorrow and
he will do a contrast xray of her rectum to see about the connection.
Can anyone tell me what kind of pain or problem could be happening to
my daughter right now since she isn't able to verbalize it to me.
Or any tests I can suggest to the doctor when I speak with him?
Mom to Madi

Veteran Member

Date Joined Aug 2006
Total Posts : 6571
   Posted 10/25/2010 10:27 PM (GMT -6)   
could she have a blockage maybe? i have an ileo, so thats not really something i know alot about.
or maybe it's gas, i know that sounds weird but post surgery, while your body gets used to it, gas can be really really bad, it had me crying.
i hope she feels better!
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!

Veteran Member

Date Joined Feb 2006
Total Posts : 5698
   Posted 10/25/2010 10:31 PM (GMT -6)   
This far out from surgery my guess would also be a blockage. I assume she has an ostomy? Did her output slow? Blockages can cause extreme pain as can gas but it seems a bit far out for gas to be an issue. This must be extremely difficult for you and for the surgeon to interpret. I hope it resolves itself soon.


Veteran Member

Date Joined Mar 2008
Total Posts : 624
   Posted 10/26/2010 6:28 AM (GMT -6)   
Sorry to hear of this how frustrating.
The only pain i knew of after a colectomy was the pain from my bowel unravelling afterwards but that is in the early days. The pain and discomfort i got (recently after my reversal) is from constipation and my join is fine. 
 if she has an ostomy then i have no idea other than what others have said - a blockage of some sort.  best feed her soft and soupy foods until you know.  hope all improves soon.
Karen 48 years old
1997: Diagnosed IBS
2003: Pelvic Floor repair
2006: STARR surgery for mucosal prolapse/Obstruction/diagnosed slow transit constipation
2007: Sigmoid resection-partial volvulus resulting in worsening of colonic inertia (cleared obstruction though)
March 2009: Loop Ileostomy
23 Sept 2010: Ileostomy reversal

Regular Member

Date Joined May 2010
Total Posts : 26
   Posted 10/26/2010 11:53 AM (GMT -6)   
I had a complete colectomy back in March. The incisions were tolerable post surgury. The only pain that had me keeling over was this muscle cramp in my abdomen (just lateral to my stoma running from bottom of ribs down to lower bladder area.) It would come about if I tried to be too active or twisted the wrong way. After about two months after surgury it stopped happening. Just part of my healing process i guess. That is the only insight I have to offer. When I had the cramps I physically couldn't straighten up. Sleeping comfortably was difficult at times. But my appetite was never compromised.
Hope she gets some answers and relief soon!

Bad flare in 2007 tried several meds w/ no relief

Colectomy w/ permanent iliostomy in March 2010

Equestrian Mom
Veteran Member

Date Joined Mar 2008
Total Posts : 3115
   Posted 10/26/2010 2:53 PM (GMT -6)   
Could be adhesions or a blockage?

Not eating/nausea is usually a sign of digestive upset...don't settle until they run every test possible!

Welcome to the forum yeah
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!

Veteran Member

Date Joined Aug 2006
Total Posts : 6571
   Posted 10/26/2010 10:54 PM (GMT -6)   
did they test for UTI's or kidney stones? not related but they can cause really bad pain
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!

New Member

Date Joined Oct 2010
Total Posts : 3
   Posted 10/30/2010 1:44 PM (GMT -6)   
Thanks to all of your replies. It seems everything looks
fine on the connection for the surgery. My daughter does
not have a bag. They reconnected her stomach to a very
small portion of the intestines to the rectum. There was
no showing of blockage and all is well.
When I followed up with her primary care doctor, I asked
him what does the intestines do and could this be causing
her behavioral changes since everything else looks fine.
He explained what function the intestines have on the body
about the sodium and electrolytes. He ran a blood test on
Friday to test her sodium, electrolytes and tsh.
When I went online to read about low levels of sodium-this
looks just like the symptoms my daughter is having.
*mental confusion, frequent urination, cramping, no appetite.....
Has anyone experienced something like this?
I'm having to wait till Monday morning now to get the results of
the test. Meanwhile, we are trying to increase her sodium with
gatorade. I'm praying this will be the answer.
Would you believe the doctor suggested we have her committed?????
So exasperating!
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