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killcolitis
Veteran Member


Date Joined Dec 2009
Total Posts : 2396
   Posted 1/8/2010 6:43 AM (GMT -7)   
I've only been on this site for a few months but I unfortunately know the torture of having a child go through this. You and Dillon are in my thoughts, he is in the best of hands and I hope he is at the end of his journey with UC and has many years of health to follow.
Best wishes!

Collicat
Veteran Member


Date Joined May 2009
Total Posts : 827
   Posted 1/11/2010 2:09 PM (GMT -7)   
Thanks Killcolitis!

We are now 3 days post surgery and unfortunately it is not the end of his journey with UC quite yet. The surgeon built, what she called, a "beautiful" internal pouch but he now has a loop ileostomy for a couple more months and then one more minor surgery to connect everything. We hoped this would be laproscopic surgery but he ended up with an incision from navel to pubic bone. He is pretty bummed out right now but, really, the only thing that is important is that the surgeon built such a great pouch. The road truly is pretty rocky at times but we know we will make it to the end.

We thank you and everyone else for your good wishes and thoughts. You are all such a great group of people!

Cathy and Dillon

mamaluke
Regular Member


Date Joined Apr 2009
Total Posts : 55
   Posted 1/13/2010 7:02 AM (GMT -7)   
Collicat - Anthony's surgery was three stages as well and his surgeon insisted from the start to do it this way. He was emphatic about his experiences between two and three stage, stating that down the road, the three stages surgery showed a higher success rate. I know Dillon must be upset - this is so much for them to go through at such an early stage in life.But when you think about it - it does make sense to have the pouch there for a while to heal (and make sure there are no leaks) before he starts to use it. I know it seems like such an ordeal getting through to the next stage, but in the long run I think it will make things better for dillon as he goes forward.

BUT.....I did want to update since my last post. Suddenly Anthony has come alive and is doing quite well - the frequency (with the help of lomotil and immodium) has slowed down some, the loop ileostomy incision has finally closed and he in general is just feeling better. His energy is good and he is basically "adjusting". In the past two weeks, something really seems to have clicked and he is feeling much more hopeful and encouraged. I know the same will happen for Dillon. If you ever want to put dillon in touch with him, just say the word - he is not all that much older than him and I'm sure he can really understand what he is going through.

The loop ileostomy can be a little trickier that the other ostomy - don't hesitate to get a home nurse to stop in if you can. He will probably need different supplies. Be prepared that the bag might not stay on as long as the first one. And watch out for the skin around it. None of this is serious if you are prepared. A lot of times the surgeons don't tell you this simply because they don't know all that much once you get home.

Good luck and try to stay positive. As hard as it is when you are going through it, remind yourself that it will be over soon. and it will!
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