My son is 4 years old and has tuberous sclerosis. He has escaped most
of the neurological symptoms of this disorder, but suffers from cystic
kidneys. He has approx. 10% of normal kidney function, but his creatinine
numbers are stable at around .8 or .9. He has an elevated blood pressure
of around 115/80 which his nephrologists do not find high enough to
medicate at this time.
Developementally, he is far ahead of the game, having taught himself
to read at 3 years of age. He is a bright, caring, happy boy.
Around 8 months ago he was hospitalized with a twisted large intestine,
seemingly unrelated to his TSC. This was caused by his colon being too
long. The damaged section of colon was removed and the two ends were
This surgery was not successful as the lower 6 inches of colon (in-
cluding the rectum) developed a severe inflammation which was apparently
caused by reduced circulation to this area due to the surgery itself. We
spent about 6 weeks at Cedars Sinai Medical Center trying to get it to
heal. He could not eat, and was on TPN thru a central line. He lost alot
of blood and required 2 transfusions. It was touch and go for a while
and a trying time for all.
When it became apparent that he was not going to heal, he was given
a temporary colostomy with the thought that the inflammed section would
heal given complete rest for 3 months or so.
After 5 months he continued to pass extremely foul smelling mucus
containing blood clots and a few drops of fresh blood on a regular
(almost daily) basis. The surgeon's feeling then was that the rectum and
lower colon were non-viable tissue caused by compromised circulation and
felt that it should be removed and his colon would be sewn directly to
I asked if there could be complications, including incontinence,
and the surgeon said, "Oh no, we do this all the time". He said that
we needed only wait until his colon had lost it's distention in order
to perform the procedure.
Seven months after leaving the hospital a colonscopy reveals the
inflammation to be the same. Now the surgeon is not optimistic. Doing
nothing at this time should cause no complications so we have adopted
a wait and see approach.
Sorry to take so long to give you the particulars, but to get to my
questions - Are there any therapies, supplements, or drugs that you know
of that might foster increased circulation and/or help his damaged tissue
to heal? (bearing in mind any any dangerous side effects given his lim-
ited kidney function).
We are in no rush. My son has accepted "the bag" as normal and it
has become routine. However, if there is something we can be doing
instead of just waiting, I'd like to know about it.
Thank you for your time.
I would first like to briefly recapitulate the events to see if I have it right. It seems that your son, with a history of tuberous sclerosis had developed a twisting of large intestine (sigmoid volvulus) requiring surgery. During the surgery the strangulated bowel was resected and an attempt to connect healthy bowel was unsuccessful. Due to poor circulation in the area of the surgical connection your son required another operation and a diverting colostomy. He has a portion of large intestine and rectum still in place, but that area continues to bleed and continues to appear inflamed on colonoscopy.
If this diverted segment is inflamed solely on the basis of ischemic changes (poor blood flow) for such a long time it is unlikely that it will return to normal and eventually your son will probably need another operation to resect this area. That does not necessarily mean that he needs to have the operation to hook up the colon to the anus. He could continue having a colostomy and just have the diverted area resected. You all need to be comfortable with the risks, benefits and alternatives of the colo-anal procedure before consenting to it. You need to be sure you understand the possibility of long-term effects in pediatric patients who undergo this procedure.
On the other hand, there is a clinical entity called diversion colitis. This refers to an inflammation that occurs in diverted, resected colonic segments that are excluded from the normal fecal stream. Your son may be passing blood and mucus from the excluded segment not only secondary to ischemic changes, but secondary to diversion colitis as well. Diversion colitis in adults is usually treated with an antibiotic called metronidazole (Flagyl). There have been several reports of adult patients being treated with short chain fatty acid enemas. I do not believe these enemas are commercially available. You may also want to post this in the Maternal Child Health Forum to get a pediatrician's perspective.
This response is being provided for general informational purposes only and should not be considered medical advice or consultation. Always check with your personal physician when you have a question pertaining to your health.
*Keywords: sigmoid volvulus, ischemia, colostomy, colo-anal anastomosis, diversion colitis
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