Transverse Colon Volvulus and continuing problems

[brenda999]

In July 2005, at age 6 my son was doubled over in pain with his stomach and it was quite distended. After an exray, they found that a part of his colon was twisted and enlarged to the size of a grapefruit. They concluded at the E.R. that he had a volvulous. Upon surgery, they found it was transverse colon volvulus, which is very rare. The surgeon sd the volvulus was full of only air. part of the colon had to be removed because it was "dead".  He had to undergo a 2nd surgery 2 days later to remove scartissue that was from the first surgery. He was in the hospital for 13 days with no food, only I.V. fluids. It appeared that his intestines had been twisting and untwisting. My son had always had a large bellyfor his little body. I asked many doctors along the way if it was normal.They would press on it and say its fine.I also noticed that he never passed gas. Only when he had a B.M. Anyway, the current problem is that he is filling up with air again.  He complained with a stomach ache and I had him ex-rayed and they said he was full of air.  He still is not passing gas normally.  Does anyone know what causes this?  Or what may help him.  I just need some answers.I am going to take him to gastro specialist because he has not seen one.  When he was released from hospital they acted as if he would have no further problems.  Thanks for any comments or advice..

[ozark]

does your child have any other medical history? is he on any medication? does he have any food allergies like lactose intolerance, gluten?  what's his bowel history like?

[brenda999]

Still no new diagnosis.  The biopsy for Hirschsprung's was negative.  No one seems to know what is causing his problems.  The pediatric G.I. said he may need to see a Dr. in Columbus Ohio that specializes in motility disorders.  He is in pain on and off but his stomach stays distended and looks like it would be painful.Any comments would be appreciated!!

[ozark]

brenda
i hope all is well.  let us know how you make out with the biopsy.  i'm interested in what they find out and hope you get some answers to this puzzle to help your son.
take care

[brenda999]

I took him to his pediatric surgeon yesterday, and he does not think it is hirsprung's.  he says now his sigmoid colon is elongated to the size the transverse colon was when he last operated on him.  He is still scheduled for a biopsy on 3/9/06 to test for hirsprung's.  I also have appt with pediatric g.i. dr. on 2/27. We don't know why his colon is enlarging. He doesnt think its hirsprung's because he is not holding fecal matter, it's just air. Also his colon is not enlarged in the places it would be from hirschsprung's.  The surgeon says that the transverse and sigmoid are the only parts of the intestenines that are not "tied down" so he wants to remove sigmoid, then he feels that it will possibly correct itself.  But we still need to know why his intestines arent working properly.  Why he is not passing the air like he should.  Maybe the G.I. dr. will be able to shed some light on it.  The surgeon tried to pull up other cases like my sos's and only found 1 in Japan where both the transverse and sigmoid colon had a volvulus.  (sigmoid is not in volvulus yet, but could be very easily).  I saw pictures of the last operation, and you would not believe the size of the colon he removed!!! It looked like something from a horror movie.  He has pictures of the whole intestines , both normal and the abnormal, and it was 10 times the size of normal.  At time of last operation, the sigmoid was normal, now within 5 months it has stretched to about 8 times normal. I will see what g.i. doctor has to offer.  thanks for your response!!

[brenda999]

Anyone out there have any idea about the prognosis of someone diagnosed at age 6 with Hirschsprung's Disease?  My son is small for his age, only 45 pounds and almost 7 yrs old.  They NOW decide that he has had this his entire life.  I have read that it stunts growth, but I am wondering if growth will improve after the pull-through surgery???  Will he be a normal size?  What about recurring problems?  Any input would be appreciated.  Thanks..

[ozark]

hi
do they definitely know he has hirschprungs? have they done biopsies of his intestines? has he been seen by a pediatric surgeon?

[ozark]

hi
i'm glad they are investigating for hirschprungs..i'm a pediatric nurse and have seen this often.  Uusually it shows up at birth when babies don't have bowel movements..if  your son had bms along the way off and on, maybe constipated etc..it probably wouldnt ring a bell..he could probably have segmental hirschprungs where the innervation of the colon is missing sporadically thruout the colon...usually it's a problem in the descending colon therefore babies don't have bms because the peristalsis is gone in the lower area and they present early.  good luck with your son and i hope they are able to find out what's wrong soon...this is something you want diagnosed quickly to prevent further obstruction. take care

[brenda999]

Thank you for responding. Actually, you are on the right track I believe.  I took my son back to the surgeon that preformed the surgery to remove the volvulus yesterday.  They did a barium enema and they found that his colon is elongated again. He wants to test him for Hirschsprung's Disease. The symptoms seem to fit. You would think they would have found it before now since he has had it from birth, but who knows.  Maybe this will be the answer and can be corrected with only one more surgery.  Thanks for your input..  Are you familiar with this disease?  If so please tell me your experience.

[ozark]

does he have normal bowel movements? have they done any biopsies of his intestines to see if he has hirschprungs disease? its very hard on parents to see their little ones having to go through something like this,,,,,,,,,goood luck

[Kevin Pho, MD]

It is difficult to say without evaluation.

If he is not passing gas normally, this can a sign of an obstruction - whether it is from a recurrent volvulus or an adhesion.  Other signs of this would be nausea, as well as difficulty in passing stool.

I would consider obtaining further imaging studies, including a CT scan.  

A referral to a pediatric GI specialist or surgeon can be considered for further evaluation.

Followup with your personal physician is essential.

This answer is not intended as and does not substitute for medical advice - the information presented is for patient education only. Please see your personal physician for further evaluation of your individual case.

Kevin, M.D.
kevinmd_b