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Ulcerative Colitis (1998)
Aaron was diagnosed with Ulcerative Colitis in 1992, at the age of 6.
There is plenty of information out there about what Ulcerative Colitis is. This, however, is about what Ulcerative Colitis does... to the lives of those affected by it. Living with UC has been both physically and emotionally challenging for all of us, but especially for Aaron. He has had to live with a total lack of privacy, devastation and embarassment amongst his peers, an endless steady stream of medications, and intrusive exploratory tests one after the other. He just wants to be a normal kid again, with normal concerns.
But Aaron will never be a normal kid because it will never go away.
UPDATE - The Cure (1999)
On Sept. 16, 1998 Aaron was hospitalized for severe pain and heavy rectal bleeding, where his team of doctors tried everything they could to get his flare under control with medications. His disease failed to respond adequately to the medications. Additionally, he had severe edema (water retention) from the steroids and the doctor's were having to fight to keep his potassium, sodium, and albumin levels up. He received four blood transfusions. Finally, they discovered that he had developed Toxic Mega-Colon, a potentially fatal complication of Severe Ulcerative Colitis.
On Oct. 6, 1998 he was transported to UCLA Med Center.
On Oct. 8, 1998 Dr. Fonkalsrud (Professor and Chief Pediatric Surgeon) performed the Ileal Pouch-Anal Anastomosis also known as ileal-anal pullthrough surgery. Dr. Fonkalsrud spent six hours in the O.R. removing Aaron's colon and making an internal pouch from the end of the small intestine. Although this surgery is the cure for Ulcerative Colitis, it was not to be the end of Aaron's crisis yet. Within 24 hours after the surgery, Aaron developed severe post-op infections that were the direct result of his steroid crippled immune system.
On Oct. 10, 1998 Infectious Disease was called in to find the source of the infections that were wreaking havoc on his body. ID was able to determine that Aaron was being attacked by yeast and fungus infections that found their way into his body through the central line. They ordered the removal of his central line and put him powerful antibiotics over the course of the next five days. Within two days Aaron's fevers were no longer spiking, and by the end of the five days there were no traces of the infection left to be found.
On Oct. 18, 1998 Aaron was finally allowed to return home.
Many people were touched by Aaron's struggle and pulling for him each in their own way... from the doctors & nurses who cared for him to the people around the world who prayed for him. We are extremely grateful to each and every one. A simple thanks does not seem sufficient, especially for those of you who went that extra mile or ten. It is my hope that someday, in your time of need, someone will be there to repay the kindness that you gave so freely to us in ours. Thank you and may God bless you all.
UPDATE - Pouch Concerns (2000)
Aaron has been re-hospitalized three times since his ileostomy takedown. One hospitalization was for adhesions that had resulted in Small Bowel Obstruction, which required surgery to correct. Adhesions are a potential risk after any surgery. He could develop them on and off for the rest of his life, or he could never get them again. The other two hospitalizations were the result of severe bouts of Pouchitis. There are warning signs and ways to prevent possible complications such as pouchitis, as well warning signs of other complications. If your child has had a total colectomy, or you are considering this surgery for your child, you may want to read Long Term Concerns with the Pelvic Pouch by Tracy L. Hull, M.D.
UPDATE - Health & Normalcy (2003)
It's been five years now since I wrote... "But Aaron will never be a normal kid because it will never go away."
Today, I look back at those words and I remember the hopelessness, helplessness, and powerlessness that borne them. I remember the sleepless nights that I spent sitting in his hospital room watching Aaron sleep and praying that God would let me trade places with him. I remember the despair that threatened to swallow my entire being when, only a few days after the surgery that was supposed to save his life, his life was in more danger than ever from infections that had taken over his body. But, I also remember the spark of hope that once again appeared when he finally began to bounce back. And, I remember the tremendous relief that I experience when I realized he had made it to the other side and things were going to be okay.
These memories are bittersweet. I believe we can't truly appreciate the good times if we're never forced to endure the bad. I will never forget the lessons that we all learned or the ways that the hard times grew us all.
Today, Aaron is a normal kid. His kind of normal, anyway. ;) He's a healthy and well-adjusted teenager. He doesn't like to think about what he's been through... only about where he's going and how he's going to get there.
He hasn't had a severe bout of pouchitis for more than two years. He hardly ever has even mild problems associated with his pouch and/or the absence of his colon. I can't even remember the last time he go the flu or a cold!
Today, Aaron is a well above-average high school junior. He's in a medical magnet program, advanced placement classes, honors classes, link crew, and leadership. He's been in the Who's Who of American High School Students two years in a row, and colleges from all over the country are inviting him to consider them for his future education. He's set his sights on MIT and, although he will "consider" a comparable technical college other than MIT, he only gives the other colleges a passing glance and a teenager type grunt of near-recognition. In his spare time, he builds and repairs computers, fixes video game systems, and is webmaster of his own domain. He seems to know only two modes, truly dying or truly living. He got his life back five years ago, and he seems to show his appreciation of that gift by grabbing that life by the horns.
It's been five years since I got my son back, life gets better every single day, and I cherish every single moment.
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