How has surgery been for you?

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RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 12/19/2008 1:23 PM (GMT -6)   
So...for those of you who have had the surgery, what is it like?  What is the recovery time?  Food limitations?  Has anyone had a successful pregnancy afterward?  I think my husband and I know it's going to happen, but 'when' is the question riding on us right now.  I work full-time, hold a part-time job and attend grad school out of town, and I really do not want my life to be affected too much by the surgery...but then again, it's already being stunted b/c of my immune difficulties and hospital visits.  I would just like to know your experiences and thoughts on the matter.
Thanks,
Robin
Dx-May 2007  Asacol-2400mg bid  Prednisone-20mg  Remicade-4 Tx
Mommy of a 1 year old and a wife for almost 2 years!
Life has never been so sweet!  I appreciate the small things in life...the little joys that occur every second of every day.  Though we struggle and have crazy complications, nothing can over ride our love and happiness.


Charlotte Gilman
Regular Member


Date Joined May 2008
Total Posts : 100
   Posted 12/19/2008 1:59 PM (GMT -6)   
I had surgery just this year and had short recoveries both times (two-three weeks) and no food limitations beyond the usual post-surgery low-residue diet (four weeks each time). My surgeries were laparoscopic; I had no pain that required painkillers beyond the drugs they gave me to put me out. I do everything I want to do now and can't believe I waited ten years to do this.

You might also want to post in the Ostomies board or on jpouch.org--there are probably more people there who have actually done the surgery. I spent more time here when I was trying to avoid it!

suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 12/19/2008 3:08 PM (GMT -6)   
I had surgery 7 years ago, recovery was 3 weeks for both surgeries. I am primarily a vegetarian and found that I couldn't eat much in the way of fresh fruits and vegetables (comfortably) for about 6 months. After that period of adjustment I am back to my preferred diet which is mostly fresh fruits and vegetables. I had the traditional surgery but had relatively little pain (except the first 12 hours) and started driving the day out of the hospital. I am very physically active (100-200 mile hikes, backpacking, etc) and have found this surgery to be lifegiving. There are many women who have had babies post surgery and like Charlotte says they are at www.j-pouch.org

Find the best possible CR surgeon, one with lots of experience. That should be your #1 concern.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 12/19/2008 9:20 PM (GMT -6)   
Thank you very much...both of you have been very helpful. : ) It's all very overwhelming, but exciting at the same time knowing this all could go away!

Have a nice weekend!
Dx-May 2007  Asacol-2400mg bid  Prednisone-20mg  Remicade-4 Tx
Mommy of a 1 year old and a wife for almost 2 years!
Life has never been so sweet!  I appreciate the small things in life...the little joys that occur every second of every day.  Though we struggle and have crazy complications, nothing can over ride our love and happiness.


suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 12/19/2008 9:36 PM (GMT -6)   

Yes, and it goes away immediately!  It was amazing to wake up from surgery and feel what a normal person feels like.

Sue


dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


Bennie
Veteran Member


Date Joined Nov 2006
Total Posts : 552
   Posted 12/19/2008 9:58 PM (GMT -6)   
My daughter had her surgery in July and takedown in November. It is wonderful to see her so healthy and happy. She has been able to enjoy her senior year of high school. Last night was her concert and she looked beautiful (she always is but she lost 45 lbs of prednisone weight). She was able to go after with friends to Friendlys and eat and laugh and take lots of pictures. She doesn't spend all her time wondering when she will need the bathroom.
 
Since her surgery was in the summer, she allowed herself to take the time to heal. She adjusted to the ostomy well. It did take some time. She did find she couldn't stand for any length of time as it would make her upper back ache and give her a headache. Since takedown she hasn't had that problem. Her energy level is strong.
 
She did have a full incision which healed nicely. She had pain meds in the hospital (an epidural for the first). After she was given percoset (darvocet did a number on her) but she rarely used them. She took very little pain meds for the takedown.
 
She chose surgery now because she is only 17. She is still under our insurance, our care, she doesn't have to worry about supporting herself yet, no husband or kids yet. There are many women who have had successful pregnancies after j-pouch so she is hoping for the same.
 
Good luck with your decision. 
--Mom of bratcat (17 years old) and nonamejames (19 years old)--
Daughter bratcat was diagnosed with pancolitis October 2006
Flared Fall 2006, Fall 2007, Spring 2008
Asacol, Rowasa, hydrocortisone enemas, prednisone, 6-mp, Remicade
7/3/08-Step 1 j-pouch surgery and no more meds!
11/10/08-Step 2 reconnect!
 
Son nonamejames was diagnosed with Crohns in Spring 2008
Asacol, Pentasa, 6-mp


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 12/19/2008 11:47 PM (GMT -6)   
it's AWESOME!!!! I had surgery in april 2007 and finally after 8 years, i got my life back! i got to be the person i was before i got sick! I eat pretty much whatever, just got done eating a big salad! You will have to be on a low residue diet for about 6 weeks after surgery and then you slowly introduce foods that may cause gas or blockages. I have a perm ileo, not a jpouch. My recovery was fairly easy, surgery is not fun, by any means, but like Sue said, it's amazing the minute you wake up you feel better. I felt clean,is the best way to describe it. I mean, i hurt from surgery, but the way i dealt with that was, i just looked at it that surgery pain was going to go away, but UC pain would NEVER go away!
My sister is getting married tomorrow and i am not worried abotu having to run to the bathroom in the middle of her wedding, or thinking about how i am gonna miss the cake!
I go out on Friday nights with my friends and i stay up all night and have fun. My husband said, i don't know how you can get up at 8 am on fridays and not go to bed until 5am saturday morning! i said, before i got sick i did that all the time. And he says, you know you slept all the time when you were sick, and i hadn't thought abotu it, but i did, i was always napping or sleeping, or laying around useless otherwise. now i have energy and i don't hurt and most important i FEEL GOOD!!!

RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 12/21/2008 3:59 AM (GMT -6)   

I am becoming pretty excited about the surgery.  I am extremely nervous, but the idea that my quality of life will improve makes me emotional.  Being 28 I feel this is the best time to have it done, as I have so much living still to do.  : )  I fealt jealous as I read that when you woke up you felt normal...and clean.  I can only imagine.  And you're right...the feeling never really does go away.  There are definitely different levels of urgency, pain and discomfort, but there is always some sort of feeling present.  So...wow.  Just thinking about having it go away is so neat!  I'm looking forward to the energy increase.  I feel as though my life source is being drained and I struggle to hold on to whatever scrap of energy I may get throughout the day.  I also have great difficulty with my immune system, and would really like to not have any more open wounds to care for...two is plenty for right now. 

Thank you for all your support and guidance, I do appreciate it!

: )  Robin


Dx-May 2007  Asacol-2400mg bid  Prednisone-20mg  Remicade-4 Tx
Mommy of a 1 year old and a wife for almost 2 years!
Life has never been so sweet!  I appreciate the small things in life...the little joys that occur every second of every day.  Though we struggle and have crazy complications, nothing can over ride our love and happiness.


princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 12/21/2008 9:56 AM (GMT -6)   
What inspirational replies! I am really considering surgery now, I have suffered for 13 years and I have had enough of this. Even this morning I woke up in pain, neauseous, had D and lost lots of blood. It gets exhausting being sick all the time.
Diagnosed with Left-sided UC in 1995 at age 15, Prednisone, Rowasa & Hydrocort. Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Aloe Juice, Canasa, Enotcort, Colazol, Anamantle, Remicade, etc... had 1 inch deep rectal ulcer 2004, put on Remicade, August 2007:Increased Remicade dosage-700mg every 6 weeks,diagnosed w/ Psoriatic Arthritis & Fibromyalgia Current meds: Clorazepate, Lomotil,  Tylenol pm, Lyrica started 1/17/08,  Humira started 4/4/08, 6MP started 6/24/08


RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 12/21/2008 10:55 AM (GMT -6)   
We have definitely decided for the surgery...the sooner the better, really. : ) We've battled unsuccessfully for remission for two years, and I'm becoming very tired. Now that we've decided to have the surgery I'm just in a better mood...I have hope...I did not realize I had become hopeless...but now...WOW! I'm excited!!! Life without Prednisone!!! I'll have my face and body back!!! Yee-haw!!!!

Thanks for sharing your thoughts and feelings...it really does mean a lot.

: ) Robin
Dx-May 2007  Asacol-2400mg bid  Prednisone-20mg  Remicade-4 Tx
28 year old Mommy of a 1 year old and a Wife for almost 2 years!
Life has never been so sweet!  I appreciate the small things in life...the little joys that occur every second of every day.  Though we struggle and have crazy complications, nothing can over ride our love and happiness.


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 12/21/2008 12:35 PM (GMT -6)   
No pred is the best thing ever!!! I got some weird rash over the summer (turned out me and my son had gotten into an ant hill, not fun) and the dr was like, oh take this pred that will clear it right up , and i said NO!!! i actualy screamed it, lol. she looked at me kind of funny, and i explained and she laughed and said, ok we will try something else.
I'm glad you have come to a decision and are happy about it, it's normal to get cold feet and freak out some though, so don't worry about that.

RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 12/21/2008 1:15 PM (GMT -6)   
You know...I think about all the months we have struggled, and how miserable life becomes when I'm down and out with the UC. Not only do I have the UC to deal with, but horrible side effects from the medications. So, in the long run the surgery is the best thing we can do. I am nervous...who really looks forward to carrying their bowels around in a bag? But again, life without the steroids! There's a picture of my husband and I at my sister's house, and each time I see it I get defensive b/c I never realize it's me right away...my face was thin and you could see my jaw line. I do not appreciate the 'moon face' term, as it can be kind of hurtful. I've also gained a lot of weight this time, and in order to lose it while still on the Prednisone I practically have to fast for days on end. And my energy level...how wonderful it will be to not pass out by 9pm every night?! My family and I are just so excited about this procedure, and I cannot tell you how wonderful it is to communicate with you all about your experiences.

Thanks again!!!

: ) Robin
Dx-May 2007  Asacol-2400mg bid  Prednisone-20mg  Remicade-4 Tx
28 year old Mommy of a 1 year old and a Wife for almost 2 years!
Life has never been so sweet!  I appreciate the small things in life...the little joys that occur every second of every day.  Though we struggle and have crazy complications, nothing can over ride our love and happiness.

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