Time is Standing Still…

son with bad colitisIntroduction:

I am a wife and mom of three special needs kids, ages 19, 15 and 10. All 3 of my boys suffer from IBD. My oldest, Chris, has it the worst. He has UC. My middle son, Ryan, has IBS. My youngest son, Matty, is autistic and has a hiatal hernia, IBS, and is currently being tested for Crohns and Celiac’s Disease.

The Story:

I am writing to you today from the comfort of a waiting room at the hospital. My oldest son, Chris, is in the middle of surgery, having his large intestine and a portion of his small intestine removed and a “J” pouch placed along with a temporary eliostomy bag. He has been in surgery since 7:30am. It is now 11:35am. I am sitting among many other people who have loved ones in surgery for one reason or another. The come in, wait and then leave. I, however, have been here since 6am as my son had the first scheduled surgery of the day. His surgeon booked the OR for 8 hours, although they believe it should take 5 or 6 hours. When we got here and were in pre-op, I gave my son and hug and a kiss and then watched as the escorted him out of the room and through the doors to the operating room. I can only pray that this will not be the last time I have the opportunity to do that.

Chris was diagnosed in 2010 with Ulcerative Colitis after years of IBS symptoms. He was given antacids and changed his diet and still no relief. We finally were referred to a pediatric gastrointerologist in October of ’10. After getting both scopes done, his doctor concluded that, yes, it is UC, and one of the worst cases he had ever seen in all his years in medicine. Chris was placed in just about every medication on the market, including 2 infusions of Remacade…all of which failed. After several rectal bleeds and hospitalizations, his doctor re-scoped him. The results were worse than before. Chris had no choice…either have your colon removed or die.

So today is the day. We found a surgeon that his gastro doc suggested at a local hospital and he completely agreed with our doctor that the colon needed out ASAP. Not only that, but the illness had started traveling up into the small intestine (which I believe is Crohns). This is the first of 3 surgeries my son will need. But as I see it, today is the first day of my son’s second chance at life.

I will continue to sit here and wait for my hospital pager to start beeping to let me know when he gets out and heads into recovery, which is an added 90 minutes. I have the medical/surgical board next to me and I keep waiting for it to change. My prayers will continue until I can once again wrap my arms around my son and hug and kiss him and tell him just how much I love him. After all, he will always be my baby.

To check out my tribute to my son, visit http://www.youtube.com/watch?v=P2JGQo88ufA&feature=g-upl


 

written by Missy Lundeen

submitted in the “Someone in my family has UC” section




6 Responses to Time is Standing Still…

  1. shelly September 14, 2012 at 9:17 am #

    Missy, I’m a mom with a child with UC too. I am about to embark on the same journey with my little one. I just wanted to know I’m sending your the most healing thoughts. It will be difficult but in the end he will be well. I know how hard it is but I also know that in a few month you will be updating us telling us how great he’s doing in his life cured of this terrible disease. Please keep us posted.

  2. Allison-3
    Allison September 14, 2012 at 10:54 am #

    Missy-
    My heart goes out to you and your family. You only get what you can handle and you have a LOT on your plate… you must be an incredibly strong woman. I am sending healing thoughts and prayers.
    Allison

  3. Jess
    jessica September 14, 2012 at 5:59 pm #

    I cannot imagine my babies having to go through the pain associated with UC. It is such a horrible disease that I struggle with daily. It breaks my heart to hear your baby would ever have to go through that. Today is a new day for him. Praying for a speedy recovery and a new life full of joy and laughter without the constant struggle of UC. Thinking of you while you wait on your sweet boy. Please keep us posted on his progress.

  4. uma September 14, 2012 at 6:15 pm #

    My thoughts and prayers are with you. I am sure everything will go smoothly and he would be a strong young man soon.

  5. Bev September 15, 2012 at 1:01 pm #

    What a strong woman you are…and you probably don’t really even know it!

    My heart is with you. I am a mother, and I am the one with UC. Thank goodness it isn’t MY son. I am truly the lucky one, here.

    Take care of yourself, too. I’ll bet you do alot of taking care of everyone else first.

    Cheers,
    Bev:)

  6. Missy September 15, 2012 at 8:00 pm #

    Thank you all for you kind words of encouragement and prayers. I can tell you that this has been one hell of a trip. Chris came out of surgery Monday around 1pm. The surgery went very well. His surgeon did bring me into a consultation room to talk to me about the surgery and the fact that if Chris had waited any longer to have this surgery, he would only have had days till he got deathly ill. Or die. His entire colon had several holes that were leaking into his body cavity, which was the reason why he was bleeding so badly.

    The last few days have had its ups and downs. Lots of meds to take, lots of IV fluids, lots of needles. He is now cleaning his own bag and knows how change them. And today for the first time, he was allowed to walk outside to the healing garden for some much needed summer air.

    And guess what? Now I get to schedule surgery for my 10 year old who has Crohns.

    So I am off to bed…have to be at the hospital for 8am.

    Again, thank you all for your prayers.

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