The CGD Cafe

[CGDAdmin]

This message was auto-transfered from the old Phorum system.

Date: 2001-10-17 13:50
Author: Mary Hurley
Email: cgda@socal.rr.com
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Hi Lisa,

It is nice that you signed the CGD Message Board. I'm sorry to hear that Bryan is having blood in his stools. Having blood in the stools is fairly common for CGD patients. The frequent bowel movements that Bryan is having is probably not helping the bleeding to stop.

If possible, you might want him to be examined at NIH. Stephen (age 20) currently has some blood in his stools. "NIH" saw two small visible sores, but in order to determine exactly what they were, they sent him to a surgeon there who said they were (pilonidal cyst/sinus). These can be quite deep and can bore down to the bone. They suggested sitz baths and gave him a prescription of Augmentin, but said if they still did not heal, he would need surgery. I believe, in Stephen's case, he had a pelvic CT scan.

Also, for the loose stools, some CGD patients are being helped by taking Remicade. A few have gone to the hospital for "bowel rest". I assume what they mean by that is that they were only given TPN (nutrition by IV)so the area could have time to heal.

Both Erik (age 24) and Stephen had bleeding when they were quite young, but, like most CGD patients, it doesn't stay for a long time. Take care and keep everyone posted. Our prayers are with Bryan. Mary