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My 13 yr old son has been sick with UC or Crohns (still undetermined)for nearly 2 years and has been in and out of the hospital.  He has been on all different kinds of meds and nothing has worked.  The docs has told us that they have nothing left as far as meds to offer.  He has gotten worse over time.  He is now on a feeding tube and is supposed to be at 72cc an hour, but I can't get it over 55cc, 45cc over night without him vomiting.  Even at this rate he is vomiting.  Now they say that surgery is our only option.  How do you make such a decision?  What are the chances of having long term problems?  Will he actually get better?  Any others who have been through this have any suggestions or thoughts?

 Reply posted for melrosesun.

I wrote to you previously. My 9 yr old granddaughter just went thru the "last" surgery, removal of the bag, going to bathroom normally. She is doing WONDERFUL. It is like a miracle happened. She feels so good, is laughing again, and it is like it all never happened.  Tell him if she can do it he can do it. The surgeries aren't easy but the end result is the best.

 Reply posted for melrosesun.

My son has crohn's, he was diagnosed in 2007 when he was 10&1/2yrs. old, he has tryed every drug out there and nothing works, he was in the hospital 3 times last year, because his flare ups were so bad, the doctor wants to remove his colon and put in a permanent bag, he is very upset about this, I have explained how other people thought it was going to be awful, but they felt so much better after and wished they had done it sooner.

that isn't my only concern though, what happens when the colon is gone? will the disease spread everywhere else? my understanding is this disease is affected from the thoat to the rectum, is it not? will he have more problems elsewhere?  I just want him to feel better for more than a week here or there, but I don't want harm him either, What should I do? Also how long is the recovery after this surgery, really? he is in his eigth grade year and there are alot of fun things going for them this end of the year and I don't want him to miss out on anymore than he already has the last 3 years, also he is going to the camp for kids with crohn's this august and I want him to feel good for that as well, please help me? anyone who knows what I am going through or has had this surgry who has crohn's would be very, very helpful, thank you so much! Ty's mom

 Reply posted for melrosesun.

My granddaughter is 9, has UC, and recently had her colon removed. She is due to have the reversal done in February. You will have some hurdles to jump but in the end I feel it is worth it. They can't go on their whole life living like they are. When I read about people that got it when they were 11 and now decide to have the surgery at 35 I think wow what a life they have had (or no life)...and then they say how they should have done this a long time ago. My son is a doctor and researched everything before they made the decision, the most important thing is to make sure the surgeons are those who have worked on younger people. She went to Boston and the doctors were fabulous. Good luck, I will let you know how she makes out with her last surgery, coming up soon.

 Reply posted for melrosesun.

i had surgery when i was 18/19 yrs old let me tell you this anything was better than what i was going through. i had uc it hit me hard i was int he hospital for nearly 3 months they did everything they could not to operate on someone so young.  it sounds to me that this is affecting not just your son but the whole family that is true but the quality of life plays a very big part here, it sounds like you have none. the bottom line is, once you have the surgery your son will feel much better and will soon act like a 13 year old. he may have a bag for a while as i did but i opted for the reconstructed surgery.  they will ask you whether or not  you want to go for this , i say yes there are risks involved but they outweight the idea of life in pain and a bag.  all i can say now is your son needs to be kid and not a sick one the surgery will give him his life back, i've had the surgery in 1988 and my life is great there are things he'll have to get use to but he's young and will do just fine.

 Reply posted for melrosesun.

I have surgery coming up for what was thought to be Ulcerative Colitis, and is now Crohn's. I cannot personally vouch for it (yet), but my father knows two people who have had different surgeries: one attorney, diagnosed with Crohn's, who had a re-section, what I'm scheduled for, and his cardiologist, diagnosed with Ulcerative Colitis, who had a full colostomy. Both have been symptom-free since. If your son is sick to the point where he needs a feeding tube, I would highly recommend surgery.

 Reply posted for jared fantastic.

I missed the part where you said you're not sure whether your son has UC or crohn's. If you go the website that I gave in the previous post, they might be able to give more help. There are several people there who were diagnosed with UC, had surgery, and were later diagnosed with Crohn's, and most of them are doing very well.

 Reply posted for melrosesun.

If your son is that sick when he is only 13 I think the best thing for him would be surgery. Hes going to be in high school soon, and I dont think he wants to sit at home all the time while his friends are all out having fun.

I was diagnosed in 12th grade, and thats exactly how I spent my senior year, as well as the first half of my college career. I was afraid to leave my house because I had no control of my bowels. Nothing is worse than being really sick during your high school and college years.

I had surgery April 2008, and I wish I had done it sooner. I have complete control of my bowels now, and Im able to go out all the time. I can eat pretty much anything I want. And even though I have been having problems with pouchitis, I am a hundred times better than I was before surgery.

If you need more information about the surgery, www.j-pouch.org is a great place to check out. The people there are very helpful.