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Kinda freaked out....

Ok call me nieve but I didn't realise how easy it was for someone to google me and call me on my own personal home number. Now most of you know we shared our story with the Discovery Health channel about our son. Each time it re-airs I always get people finding me via facebook or myspace which is fine with me. But tonight I got a phone call that just creaped me out. This guy called me who says he to has the same condition as my son and he was glad I was able to share it. Ok that is great and all but how did you find my phone #? He said he googled me and there it was on some website. I googled myself endless times and while I do have quite the online history I could not find a phone # for me. Then I added extra key words and bam there it was my phone # on this website (yes I will be contacting them to remove it). It is an inocent website for something I signed up to recieve but now that this guy found my # it just kinda gave me the heebie geebies.

Anyways the guy wants to share his story and some other information about nutrition with me.....well I should have said I'm not interested but I gave him my email to send it to me. Not sure if he is trying to sell me something or what.

But anyways I just have to say I am happy to help others with HD but when I start getting phone calls I am just creeped out!


  1. okay, I too just sat down and watched the episode. i googled the episde and found your website. just to let you know, I too have hirshbrungs disease. but mine was not just 25% percent of my colon like your sons. Mine was total colon. In 1989, I had my entire colon removed at the age of 16 months. I am now 20. Though i do sometimes have a hard time with foods, and i get dehydrated very easily. The road gets so much easier. Its very very bumpy, I would know. Tell your son that it will be hard to wear a bathing suit around other people because they just don't understand, but he is alive, and that's cool enough in your book. I've learned so much just from not caring anymore about my looks. I'm still very self conscious but mostly about stupid things and not my scars anymore.

    As soon as the show started and i heard he wasn't going to the bathroom, I said it's hirshbrungs. And i said next he'll start throwing up. My roommate was astounded. I called my mom and told her to watch it. My mother went through the same process you did with doctor after doctor telling her i was fine. She just wouldn't accept it. So she took me to more. Then finally a gastrointerologist. Which as in the show it said you went to tons of doctors, i said, she has to go to a gastro interologist. Then they followed about 2 minutes later with that statement. They began tests with multiple biopsies until finally my mother said no more. They agreed to just one more with them removing my appendix to prove the small intestine was healthy at least and doing a biopsy right below. The appendix proved alive and well and the biopsy proved negative. They booked my surgery to remove the whole thing. I had the Boley Procedure, or Ilio-anal pull through. They fully remove the entire colon and attach the small intestine to a small pouch made of colon to get any type of absorption possible. I don't believe they do this procedure anymore due to the riskiness of it. I was the first baby, first in VA, and i believe 4th in the US. I had a food tube, a protein tube to my heart, not the most easy to obtain blood type, and I'm also allergic to Penicillin and Cephelasporins. After my surgery, they gave me PCN to fix the infections soon to follow and removed the protein tube to my heart due to the infection. I was admitted to intensive care and my temperature continued to spike. My mother demanded i be taken off the meds multiple times and they concluded i would die if they took me off.

    My mother didn't take no for an answer once again. I was taken of the PCN and was out of intensive care in 24 hours. I've almost died/or my breathing has stopped multiple times. Thanks to my mothers perseverance, I am still alive. I have never been back into the hospital with stomach related problems since then, except one accident of eating about 25 shrimp, which obviously messes up my system. Other than that, no problems. I live now at 20, without a colostomy bag, without a food tube, without tubes to my heart, and without medication. I constantly drink water and eat small snacks throughout the day; but I'm okay. and I'm alive.

    I hope this story helps you to see that there is a light at the end of the tunnel, and you will make it through this, and he will be okay.

    good luck.