BoyMama2000,
My heart breaks for you because I understand how you must be feeling and certainly know how your son feels. Your son and I have a lot in common. I was diagnosed when I was fifteen and being diagnosed at such a young age is very difficult. I am a very positive person and I tried to look at every bit of the situation in a positive way and decided I would be the person to educate others about this terrible disease. I had many bad days of course too when I would cry by myself or with my mom... Don't get me wrong. I do know that it is extremely difficult to be positive in a bad situation and it will take your son time to cope. I am a high school teacher and at 14, no kid feels normal, nevermind having to deal with this pain.
I was on Pentasa and Entocort originally for my ileum inflammation, but the damage from too much diarrhea had already been done and caused a fistula. My doctors suspect that this and the Crohn's are why I developed the fistula. I will tell you that I was put on biologics (Humira in my case) too late in my flare up. My doctors were too conservative with my treatment and I blame some of the complications of this flare up on that. I actually posted yesterday in the "My Story"
http://www.crohnsforum.com/showthread.php?t=49535 if you want to know exactly what I have been through. Needless to say, the longer I was on the Humira, the better I felt, so they tried a flap surgery to repair the fistula, which ended up being unsuccessful. I abscessed again, another seton, and they upped my Humira. I then changed hospitals and go to Mass General in Boston. I don't know where you live, but if you're within driving distance of Boston, I highly recommend them. Basically in my opinion, if they suggest biologics, he should take them because it is the most effective way to treat a fistula. Many members on here have had a lot of success with it. I was frightened about the side effects (cancer, etc.), but the likelihood is so minimal... and getting your quality of life back is much more important. I was also frightened that I would "run out" of meds to try so I was hesitant to start. My doctors at Mass General laughed and said that they are always experimenting with new drugs and not to worry. There will be more options coming. At this point, I'm just happy to feel well. It is definitely good news that his fistula doesn't go through the sphincter. Mine didn't either and the Humira has closed mine so I'm now seton free for 3 weeks now.
In regard to your son's pain, I took baths as frequently as I could. I'm sure they recommended that, but if not, it will accelerate the healing process. Within a week, I was feeling SO much better and was back to the gym I believe in 2 weeks or so.. maybe less. It depends on his condition before the seton placement honestly. One time I went in and was feeling okay... I healed much faster. Another time I was in severe pain from the abscess, so when the seton went in, I already had trauma to the area and I think it took 3 weeks for the swelling to completely go down... I teach 3-4 INTENSIVE Zumba classes a week in addition to being a classroom teacher, so physical activity will be fine for him I'm pretty sure. I never felt restrained with the seton and eventually I forgot it was there. Occasionally it would get sore so I would take a sitz bath, a regular bath, or use a heating pad as much as I could. He should be back to hockey and lacrosse soon enough, but make sure that he rests and feels well before starting again. Rushing back will do nothing, but make him more miserable.
In terms of pointers for you, he is angry I'm sure and is taking it out on the family. He may benefit from coming on here and reading through some of the stories. I know he is young, but I was too... and when I started reading I realized that there were others worse off than me and that there was hope. Also, he would be able to talk to people with the same problems. I am more than willing to email with him if he is comfortable.. I can answer many of his questions because I have been there. My email is
[email protected] ... I know this must be very difficult for you and I wish I knew what to tell you. He needs to come to terms with having this because the anger will only make him feel worse. Stress for me always triggers a flare... I have had 3 flare ups 1) parental divorce 2) going to college and 3) planning my wedding ... So I try to manage my stress the best I can. I also did acupuncture for awhile, which helped me calm down. I think talking to others with the disease will be most helpful to him. I also joined the Crohn's and Colitis Foundation of America and did some walks with them. I ended up meeting a lot of young people and made friendships. I'm sure he is not wanting to tell his friends at school so he needs an outlet and he may find talking to his family embarrassing. I know it is hard, but once he physically feels better, it should be easier for him to cope, which is why I suggest the meds.
I hope that this is helpful. Please feel free to ask me any other questions you have.
Wishing you and your family health.
Vanessa
Still, I was paranoid about removing it because of my history with abscesses. I've been on Humira weekly for 10 months and noticed my symptoms were completely gone by October/November 2012. 
