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surgury soon and scared!i am having a colectomy sept7 and i am scared to death what will i feel when i wake up i cant stand pain although i have the worse pain with my uc but it is worse than that and i am scared and insecure bout the whole bag thing although i am getting a reversal still its hard for a young women in her 20s to experience this and how about children the dr said it is a possibility but all his women patients had children after the surgury since they were healthier this is alot to handle

 Reply posted for MomofMouse.

My 14 year old son had a full colectomy with J-Pouch on July 8th. He had his reversal Oct. 28th.  Not sure where you are in your journey right now, but I would love to share our experience if you like.  I will tell you the colectomy was rough, but we knew it would be and the only regret my son and I have is not having done this earlier.  He is more himself today than he has been in 2 years.  My email is: sundropsu@yahoo.com

I pray for all who are living with UC and so thankful that I went to a very reputable facility 6 hours away from home, but wouldn't change a thing.

 Reply posted for MomofMouse.

My only regret is that I didnt have the surgery sooner and on my terms, rather than being forced into it because I was getting sicker and sicker from the major meds that were supposed to be making me better.  I feel for you and your daughter; yes 14 is a tough age alone.  I will give you encouraging words that focus on how much better she will feel after the surgeries (aside from being sore and fatigued for awhile).  She will no longer have to deal with UC and never knowing what kind of day it will be like or if she will be able to do things.  With your wonderful support, shed get used to that lifesaver, the external bag.  If a j-pouch is in the future, that would be her goal.  Actually, the goal is a better quality of life, regardless of external bag or j-pouch, and I can say mine is SO much better now, even though I still have the external bag and am hoping to use my j-pouch exclusively as soon as December.  I just taught an exercise class tonight and no one knows about my bag, they just saw an instructor with boundless energy!!  I wish you and your daughter the best of luck with your decision.  Keep contact with people who've been through it and the answer will present itself to you.

 Reply posted for Magenta.

It sounds like all of you have had success with your surgery(ies)  I find that encouraging.  Any regrets?  It is a major surgery and life change that is why I am asking.

My 14 year old, with UC, was just told today that this is very possible for her near future.  14 is a tough age to begin with, but then add UC to it, and now a colonectomy and it gets worse.

Any words of encouragement, experiences, advice, pros or cons your want to share?  I'd love to hear from you          onedreamer@juno.com

 Reply posted for dianaN.

you probably feel bad at this point, but it's probably more from the tubes coming out of your body and the bag on your stomach.  life will get better for you!

i had a total colectomy in august of 2008.  i was married at the time and my wife left me in september.  it seemed at the time like a horrible, horrible thing.  i'm here to tell you that as bleak and painful as everything may seem right now, hang in there and life will be better than you could ever know.

my life today is better than it has ever been.  granted, i go to the bathroom more than i did before i was sick, but life is good.  i found a wonderful woman who accepted me just as i was and am newly and happily married.  life with the bag was what i made it.  i was honest with myself and those around me and felt a large degree of acceptance.  if nothing else, it was clear that i made people feel better because they knew their life wasn't so bad.  the truth was that my life was actually pretty good. 

if i had a physical challenge it was, *** , i can't even remember what it was called anymore, but the align probiotic has been a lifesaver.  i've been taking that since last november and have been in good shape ever since.  there are foods that make me feel cruddy, mostly tough to digest foods, but otherwise, my day to day living has been solid. 

look to the future.  be optimistic.  if you're at the point of having surgery your life has sucked for awhile now.  it will get better.  it will be better.  life after surgery can be fantastic.  i wish you the best of luck!!!

 Reply posted for dianaN.

No, you'll be too groggy from the happy juice to be in screaming pain. You'll be all right! When I woke up from either of my surgeries, there was a small dull ache and that was it. Trust me, I would not lie. The nurses will ask you to rate your pain so they can alleviate it. Your comfort level is very important to them. Your throat might be a bit sore, the heart monitor's pinging sound might drive you bananas like it did me, but I doubt you'll be in screaming pan.

Just try not to laugh that much-it will hurt when you laugh, honest. Morphine is the best thing or you can get an epidural. Discuss pain control with your surgeon-it will help!

 Reply posted for dianaN.

Screaming in pain?  No.  Sore/uncomfortable?  Yes.  You'll be given pain meds.  They really don't want you in pain - they want you to be comfortable enough to walk so you can heal and get things moving in your digestive system.  You may have some tubes, like a drainage tube to remove excess fluid from surgery and a rectal tube so "stuff" can drain into a bag.  You'll go home when you can tolerate soft food.  I hope I'm not scaring you with all of this, it's just that this is what I had in the hospital.  I went home on Percocet, which is wonderful.  Don't be afraid to ask for help, you'll most likely be moving a little slower and you can't lift more than five (?) pounds or so,  I can't remember, I just remember feeling so relieved from my ulcerative colitis symptoms that I cried.  Also, I had a visiting nurse come after I got home to help with the bag and the ordering and everything that was so new to me. They can arrange all of this for you before you leave the hospital.  They'll tell you exactly what to do and you can call the ostomy nurse at the hospital with any questionsm too.  You get the hang of it all after awhile.  Just one step at a time.... 

 Reply posted for Magenta.

thank you for the wonderful words of encouragment :) when i wake up from my surgury will i be in screaming pain?

 Reply posted for dianaN.

Yes, Diana, this is a lot to handle.  I've been through it and remember the fear that you're feeling now.  I, too, will have my takedown (j-pouch use) next week and currently have the bag.  The best advice I can give to you now is to try to take things one step at a time.  This is a process and it can't be rushed.  You and your surgeon want the best results and that requires healing time between procedures.  I will tell you that the majority of people who have their first procedure are amazed at the relief from symptoms they feel immediately following the surgery.  You'll be sore, yeah you'll have a bag but you will learn how to clean it and change it and you'll be able to eat so much more variety ( a few weeks after surgery - careful at first).  No one needs to know about your bag and those friends and family who will know will probably be very supportive and admiring of what you're going through.  A lot of us go through those stages of shock, anger, fear, then that sweet acceptance.  Thank goodness there's something that doctors can do for us.  You may have down periods but try to celebrate your returning health.  Good luck to you, hang in there because things will get better.