Rachel had her take-down surgery!

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Rachel's Mom
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Date Joined Feb 2011
Total Posts : 92
   Posted 8/26/2011 10:53 AM (GMT -6)   
Rachel (ElddiReMsihT) had her take-down surgery on Wednesday at the Cleveland Clinic and is doing very well. Gut finally woke up today and she is looking forward to getting off the full-liquid diet. Surgeon was able to close up her open abdominal incision that we've been packing for the past four months which is a relief. We will still need to pack it for a while (he left drain areas for wicking) but I think it will heal up quickly now. The only significant pain that Rachel is experiencing is from the incision. We're very happy with how things are going and there are rumors of a possible release from the hospital tomorrow! Looking forward to moving forward into this final recovery!

Another UC wife
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Date Joined Jun 2007
Total Posts : 2111
   Posted 8/26/2011 11:12 AM (GMT -6)   
Great news....every day will be better and better. {{{Hugs}}} to you both!
Wife of 64 yr old male suffered with UC & in May 06 had a severe flare & hospitalized 6 days...various prednisone treatments leading to steroid dependence and osteopenia, 12 asacol, 200 mg Imuran, failed remicade infusions Jan-May 2010 Dependence on pain meds. Made decision 6/10 to have surgery which was on 12/17/10 (total proctocolectomy & ileostomy - unable to have the j-pouch) & now pain free

blueglass
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Date Joined Dec 2010
Total Posts : 3332
   Posted 8/26/2011 11:20 AM (GMT -6)   
Glad to hear things are going well!
48 years old, female.
2004 dx indeterminate colitis. Back and forth between Crohn's and UC dx. Many drugs, minimal success.
2010-11 Crazy skin and eye complications, high fevers, bad flaring. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery

worried mom 1
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Date Joined Mar 2010
Total Posts : 172
   Posted 8/26/2011 3:50 PM (GMT -6)   

 

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


Rachel's Mom
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Date Joined Feb 2011
Total Posts : 92
   Posted 8/26/2011 8:33 PM (GMT -6)   
She's doing very well - way beyond our expectations! She's being discharged tomorrow! We have a long drive ahead of us (5.5 hours) and we're hoping to beat hurricane Irene! Luckily we're only supposed to get rain and 45 mph winds but would like to be home safe and sound. Looking forward to healing and getting her back to college and her life. Thanks for all the good wishes! Will keep you updated. ~Lynn

betsaronie
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Date Joined Oct 2007
Total Posts : 318
   Posted 8/26/2011 8:52 PM (GMT -6)   
that's great to hear! Have a safe drive tomorrow and I hope everything continues to go well!
-diagnosed with UC Dec 2006 at 22
-allergic or intolerant to all 5ASAs, sulfa and 6-mp
-emergency transverse colostomy on 9/13/10 from perforated colon
-J-pouch surgery step 1 of 2 3/21/11
-Takedown 6/13/11
I <3 my J-pouch!

MotherofTeenwithNoUC
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Date Joined Mar 2011
Total Posts : 227
   Posted 8/27/2011 9:46 AM (GMT -6)   
Rachel's Mom,
Which Cleveland Clinic were you at? that's where we will be going (Weston, FL).  Brandon may be having his surgery sooner than expected.  He is bleeding a lot and is now running low grade fever.   WBC count is extremely high compared to last week's labs.  glad to hear that your daughter is doing so well.   we are very hopeful about the surgery now that the decision has been made.   How old is your daughter?
MotherofTeenwithUC
14 yr old male, Diagnosed February 2011. Currently trying to control flare
Started Remicade 6/15/11- 4th infusions scheduled for 9/8/11
Current meds:
Remicade 250mg every 6 weeks
Sulfasalazine - 1000 mg 3 X day
Prednisone 15 mg day
Poly-Iron 1 xday
Pepcid 20 mg, 1 x day
Canasa suppositories 2X day

Rachel's Mom
Regular Member


Date Joined Feb 2011
Total Posts : 92
   Posted 8/27/2011 7:45 PM (GMT -6)   
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)


blueglass
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Date Joined Dec 2010
Total Posts : 3332
   Posted 8/27/2011 7:56 PM (GMT -6)   
Glad your trip home was easy! Stay dry.
48 years old, female.
2004 dx indeterminate colitis. Back and forth between Crohn's and UC dx. Many drugs, minimal success.
2010-11 Crazy skin and eye complications, high fevers, bad flaring. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery

MotherofTeenwithNoUC
Regular Member


Date Joined Mar 2011
Total Posts : 227
   Posted 8/27/2011 9:29 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!

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 8/28/2011 3:39 AM (GMT -6)   
oh that's such great news!!!! so happy for her and you! i wish her a smooth and speedy recovery and for everything to work out great!!
Hodaya
06/05/2007 - STARR procedure
colonic inertia w/pelvic floor dysfunction
08/16/2009 - total colectomy w/ileorectal anastomosis
07/08/2010 - loop ileostomy

elddiReMsihT
Regular Member


Date Joined Nov 2010
Total Posts : 111
   Posted 8/28/2011 11:31 AM (GMT -6)   
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

blueglass
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Date Joined Dec 2010
Total Posts : 3332
   Posted 8/28/2011 2:40 PM (GMT -6)   
Rachel, it's great that you're doing so well! You've been through so much, nice to hear good news. I hope you have many years of good health and can put your focus and attention on school and fun and other non-UC things.
48 years old, female.
2004 dx indeterminate colitis. Back and forth between Crohn's and UC dx. Many drugs, minimal success.
2010-11 Crazy skin and eye complications, high fevers, bad flaring. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery

MotherofTeenwithNoUC
Regular Member


Date Joined Mar 2011
Total Posts : 227
   Posted 8/28/2011 4:01 PM (GMT -6)   
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
MotherofTeenwithUC
14 yr old male, Diagnosed February 2011. Currently trying to control flare
Started Remicade 6/15/11- 4th infusions scheduled for 9/8/11
Current meds:
Remicade 250mg every 6 weeks
Sulfasalazine - 1000 mg 3 X day
Prednisone 15 mg day
Poly-Iron 1 xday
Pepcid 20 mg, 1 x day
Canasa suppositories 2X day

MotherofTeenwithNoUC
Regular Member


Date Joined Mar 2011
Total Posts : 227
   Posted 8/28/2011 4:07 PM (GMT -6)   
@Rachel's Mom,
You should be very proud of your daughter and just from reading your posts, I know that you are.   She is an inspiration to others.   I hope that my son will one day be able to inspire and help others get through such a difficult time in their lives.   Doctors will tell you what they will do and what to expect, but only someone that has experienced it can truly offer insight and prepare you for what to expect.  Thank you for sharing....
 
The best to you both.
 
Pam
MotherofTeenwithUC
14 yr old male, Diagnosed February 2011. Currently trying to control flare
Started Remicade 6/15/11- 4th infusions scheduled for 9/8/11
Current meds:
Remicade 250mg every 6 weeks
Sulfasalazine - 1000 mg 3 X day
Prednisone 15 mg day
Poly-Iron 1 xday
Pepcid 20 mg, 1 x day
Canasa suppositories 2X day

elddiReMsihT
Regular Member


Date Joined Nov 2010
Total Posts : 111
   Posted 8/29/2011 6:17 PM (GMT -6)   
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!

run4pancakes
Veteran Member


Date Joined Oct 2008
Total Posts : 938
   Posted 8/29/2011 9:51 PM (GMT -6)   
I am so happy that things have gone so well for you with take down. I truly hope this is the end of the road for you and you are able to go back to school and live the normal life you deserve to be living. I know how hard it's been for me in my 30's, I can't imagine dealing with all of this through high school. You are an amazing young woman! :-)
UC dx 2/08

Done with the drugs. Step 1 (of 3) J-pouch surgery 3/22/11, Steps 2 & 3 TBD
http://life-takes-guts.blogspot.com/

elddiReMsihT
Regular Member


Date Joined Nov 2010
Total Posts : 111
   Posted 8/30/2011 8:58 AM (GMT -6)   
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. :)
Diagnosed with UC in 2007 at age 14. Three horrible flares, 11 blood transfusions. Tried, among others, prednisone (never worked), 6-MP (worked for a while), and Remicade (worked for a while) before running out of options and getting fed up. 3 step j-pouch; 1st 1/19/11, 2nd 4/20/11, minor complications, 3rd 8/24/11. Already LOVING my j-pouch!

Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 8/30/2011 11:08 AM (GMT -6)   
Rachel ... how awesome for you Sweetie. So sorry you had to go through all you did but hopefully things will be better and better every day and this will be just a distant memory (not a good one...lol...but one you can easily forget about too as time goes on)

A lot of good suggestions out there for your after care and comfort to make this an easy transition for you. Happy you have your life back.

My husband is a whole lot older than you and his end result is a permanent ileostomy that we are both so grateful for as he now is back enjoying life too. (Just left the house to go play golf)

As everyone here knows when you go from poor quality of life and in some cases no life and can now deal with whatever your solution was to get back to living.....it is truly a gift even with some of the inconveniences.

All the best to you and your Mom.
Wife of 64 yr old male suffered with UC & in May 06 had a severe flare & hospitalized 6 days...various prednisone treatments leading to steroid dependence and osteopenia, 12 asacol, 200 mg Imuran, failed remicade infusions Jan-May 2010 Dependence on pain meds. Made decision 6/10 to have surgery which was on 12/17/10 (total proctocolectomy & ileostomy - unable to have the j-pouch) & now pain free
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