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My son has moderate to severe UC.  He is 19 years old.  We have met with two different surgeons.  They both are willing to do the surgery (j-pouch); however, they had differing opinions.  One surgeon said it would be in his best interest to do the surgery due to all the medications he is on at this point.  The other surgeon said that many people don't have the surgery at his young age and try to wait it out a bit. However, since he's been on Prednisone for 3 years, he agreed that it might be a good idea to have the surgery.
My question is when is it a good time to make the decision to have the surgery? 

 Reply posted for lfinn.

I just want to say that all of these comments regarding colon resectional surgery helped me to feel comfortable, confidant in make the decision to undergo due to strictures caused by Crohn's condition.  Two weeks post surgery, I am feeling very well, very comfortable.  All the Best, VeraMae

 Reply posted for jaak70.

Hi Jaak70,

Did your daughter have the surgery yet?  I was curious if she did, how did it go & how is she now?  I hope she is feeling better.  My son who is 6 yrs old now, was diagnosed at 3 yrs old.  He has been on lots of different meds.  As you can see in his picture here, he is on Prednisone (his face was so puffy here).  Now he is on Remicade & other meds.  Nothing is working at this point & Dr is suggesting surgery is the only option.  I was against it a while back because of his age.  But, now have come to terms with it & accept that it has to be done.  He has no choice which is so sad.  But, I want the pain, constant bathroom trips, accidents at school & vomitting to stop.  That is no way to live.  It is February & I'm thinking surgery will happen within a couple months.  I'm so scared & wants what's best for him.  Thank you for anyone who can reply to me.  I welcome any advise.         

 Reply posted for lfinn.

Wish your son the best of luck with his surgery.  We'll certainly be saying our prayers for him, all UC and all IBD patients; it's part of my little ritual. ;-)  Assuming all goes well (and I know that's a big assumption), he will feel so much better; that Prednisone is certainly nasty stuff (I also suffered through several years of it before experiencing a flare-up that it couldn't control and finally having the j-pouch surgery; and that was over 20 years ago).  Tell him that the best part of the surgery (beyond being off the Prednisone) is that he will be in control of his facilities.  No more feeling tied to home.  Best wishes and please don't hesitate to ask if you (or he) have any questions. 

 Reply posted for lfinn.

Yes! I think surgery would be good.  I had been on Prendisone for 3 years before my surgery on Dec 29th 2009.  I don't regret it at all.  I am tapering off the steroids and feeling much better.  The key is getting off the steroids!!! If I would have stayed on steroids for another year I would have the body of an 80 year old, that is what they can do to you.  Give him all the support he needs and let him know that he will be fine.  People with ostomies live normal healthy lives!!!  Take Care!!

 Reply posted for wildcat.

"Quality" is really the key right now.  He hasn't had a quality life for many years now, and has learned to basically leave the house for short periods of time.  He doesn't go out or have much of a social life.  The surgery is now schedule, and I just pray the it will give him back the life he deserves.  Thanks for your great advice.

 Reply posted for jared fantastic.

Thanks so much for your reply.  It helps so much to hear from people who have had the surgery and feel good about their decision.  He decided to take off this semester and has scheduled the surgery for March 3rd.  It's a big decision, but he is ready.  Like you, he hasn't been in remission even with all of the medication he's been on for the past four years.  The UC  has taken over his life.  I appreciate your support.  I hope this brings him back to a life he deserves.

 Reply posted for lfinn.

My daughter was diagnosed 4 years ago w/uc at 10 yrs old. 3 of those years she's been actively sick. In August'08 she was hospitalized with severe bleeding and was down to 79lbs. This was a new hospital and GI specialist (second opinion)who wanted to do surgery. We wanted to wait until we had exhausted every possible option. a year and a half later she has gone thru every medication including remicade and has failed on all of them. Surgery is her only hope at this point. She still suffers everyday and misses school regularly. She has no quality of life at all-no going out with friends or any social life at all. As a parent, watching your child suffer is excruciating. We have reached the point where we think its time for her to get her life back and get off all these meds that are hurting her body before they do more damage. Its a matter of choice but you cant stay sick and on damaging meds forever. My daughter still hasnt said yes to surgery but we are working on it and she's slowly coming around. She will have it at some point so she can move forward and finally enjoy life. Good luck!

 Reply posted for lfinn.

The younger he is the better for surgery. Remember there is no cure for UC. In my opinion, his choices are to be sick throughout college, and really for the rest of his life, or to have surgery and not be sick anymore.

I had tried almost every drug out there and I had no improvements with my UC. The only thing that help just a little was prednisone. And prednisone is not good long term (if you haven't already, look up the side effects; they're not good, especially for a young person).

I think he should have surgery now instead of waiting. The younger you are going into surgery, the better for recovery. And if he's so sick now, why wait? But try not to force him into surgery. Let him make the decision himself. It took me 5+ months to decide, and I wish I had it done sooner. I can eat anything I want, I have complete control of my bowels, I'm not afraid to leave my house, and I'm on no meds. I do have some problems with pouchitis, but if I had a chance to go back I would have had my colon taken out four years earlier.

 Reply posted for lfinn.

Is there a way you could see an IBD specialist first or have you been to one before seeing a surgeon?  I'm wondering why your son has been on pred for 3 years?  Has he tried other meds?  My daughter has UC and one of her docs, her pediatric IBD specialist said surgery is the last resort.  Her doc before that a regular GI pediatric doc wanted to immediately take her colon out.  So you can get various opinions but I think going to an IBD specialist who only sees Crohn's/Colitis patients is a way to go.  Even a teaching hospital like one that would be at a University would be a good way to find another opinion also. 

 Reply posted for lfinn.

I think he has to look at the quality of his life and whether he has the "luxury" of waiting things out. I have a 21yr who was recommended for surgery in June- another MD said try aggressive medical managment. He went with the medical managment as he was not ready for an ostomy and wanted to exhaust all his options.It  really took a toll on him. Now he's having surgery 1/26- he's #20 lighter and not has healthy. Looking back-it would have been  more "optimal" then. It's a huge decision and I do think it's fine to wait as long as your health and emotional state is not taking too big a hit. Just IMO-Everyone has told him-he has no idea really how bad his quality of life has been because he doesnt know anymore what feeling good is!!  And they are probably right.

 Reply posted for lfinn.

That is a real toughy.  First of all your son, being a legal adult, is the one who will sign the consent form.  So, he needs to ask the question about how the quality of his life is right now.  How is the Prednisone affecting him, side effects.  There are some real doozies.  I feel there is no "good" time to decide about surgery - if 2 surgeons disagree, would a third opinion have some value?

Does your son communicate with the on-line community for emotional support?  Perhaps he would feel more informed if he read some of the stories here, responded, got more viewpoints, some feedback.  Ultimately the decision is his to make.  Best of luck as he decides.