Rachel had her take-down surgery!

Great news....every day will be better and better. {{{Hugs}}} to you both!

So happy for her.  Hope she heals fast.  It can only get better from here.  I have been thinking of her

that's great to hear! Have a safe drive tomorrow and I hope everything continues to go well!

Hi MotherofTeenwithUC. Rachel had three step surgery at the Cleveland Clinic in Cleveland with Dr. Jon Vogel. Her first surgery to remove her colon was in January, second surgery to create Jpouch was in April with a return hospitalization a week and a half later - she had a tough time recovering from that surgery and it took several months to get her appetite back. Her abdominal incision came almost completely open due to malnutrition. We finally got things back on track and she had take down this week. She is 19 years old - was 14 when she was diagnosed with UC and really struggled with it. She was ultimately doing double doses of Remicade as it was losing its effectiveness. She went off to college last fall and immediately flared. We had to pull her out after 7 weeks and spent some time getting her built up before her surgeries. She hopes to return to college in January. She just had takedown on Wednesday but is doing very well. We just got home tonight and I look forward to cooking for her as hospital food just doesn't do it! If you have any specific questions regarding the surgeries or recovery I'd be happy to share what we've learned. Best wishes to you and your son - it's such a miserable disease and it's wonderful to have this option. And thanks everyone else for your good wishes - we had a very easy trip home!

~Lynn

Post Edited (Rachel's Mom) : 8/27/2011 6:48:53 PM (GMT-6)

Lynn, thanks so much for the reply. So glad your daughter is feeling better.  I will contact you via your email address.  Thanks!

Thanks for the support everybody! I honestly can hardly believe how good I feel. It is seriously amazing to me that I just had my guts rearranged and I feel as good as I do. I had my reversal four days ago and already I feel so much better than I used to when I was flaring.

Wednesday night I had no action; my guts hadn't "woken up" yet. Thursday night I passed gas but no other action. Friday I started going, and Friday night I was up four times with a bit of cramping, gas, and diarrhea. But last night, and maybe it's because I'm not eating too steadily yet and there isn't an enormous amount going through me, but last night I went to the bathroom before bed at 10:30, and slept uninterrupted through the night until 6:30. 8 hours! On my second night of "going!" I'm enthralled and amazed and so, so, so happy. It's still hard to know what to expect, but I take this as a great sign.

MotherofTeenwithUC, I can sympathize with your son a great deal. I was 14 when I was diagnosed. Severe UC is so difficult, and especially for someone so young who more likely than not doesn't get a whole lot of empathy from friends who are all young and healthy and can't understand what it's like. If he's on Remicade and still feeling bad, then it's time, I think. I think he will be very glad to have had the surgery. I know I am; I would never ever go back. Even if I had j-pouch failure and had to go back to the permanent ostomy, which is what is largely considered the "worst case scenario," I'd be fine. The ostomy, for me, is also soooo much better than having UC. The process is pretty long and hard, I'll say that, but the end result is so worth it. Try not to be too scared; if his experience is anything like mine, he will NOT regret it!! If either of you want to email me at all, feel free to do so: rachel (dot) wigell (at) gmail (dot) com.

-Rachel

Rachel, I am so glad to hear you are doing well and thank you, from the bottom of my heart, for your post.  I will email you directly at your gmail email.  You are a great inspiration and provide great hope.   This is been a very difficult time for us and I only hope that my son has as great an outlook on things as you do...and I know he will. 

Thank you,

Pam

Pam, thank you kindly for your incredibly sweet words. All the best to you and your son, and feel free to email me any time you want to hear from somebody who's been through this!

Thank you so much, pancakes! This feels like the start of a new life, it really does. No, it wasn't easy having UC in high school, and I do wish I had had this done sooner, but it is what it is. That compliment means a lot coming from you, who I think has had a much better attitude about this whole thing than I have had (judging from your blog)! You're pretty darn amazing yourself. :)