Hi. I know what this feels like. My husband was diagnosed with Ulcerative proctitis (by biopsy) in March 2003, and all was well, and he was doing fine just taking Canasa suppositories for maintenance. In fact, his GI felt that it may even have just been a one time thing, and that his case was so mild, if anything at all. Then, bam, in March 2008, my husband ended up in the hospital with a c-diff infection (while he was taking no antibiotics), and was also diagnosed with severe crohn's inflammation in a large part of his transverse and ascending colon! He was in the hospital for 45 days, and lost about 48 lbs, and was being followed by a surgeon for a resection. But thankfully for him, Remicade saved the day, and healed his colon and he came back home.
It's now been 2 years since that happened. Things have not been smooth sailing, but he's doing ok. He's had a few ups and downs, but we've managed. Yes, Crohn's can be scary, and I know that all the medications are incredibly frightening, but life still goes on. I've learned that there is little point to worrying about the what ifs, all you can do is take care of the here and now, and make the best out of every moment. In some ways, our lives are better now than 2 years ago - we take the time to enjoy things in life, we've stopped working crazy hours, and we spend more time with each other. My husband still holds down a full time job, and is productive. He is in remission, can eat most everything he wants, and is normal. The only question is of course, how long this remission will last.
I too consoled myself with his ulcerative proctitis diagnosis, saying it was so much better than the alternatives, especially crohn's. And now, we've had to face the crohn's diagnosis . . . it was a terrible blow . . . and we're ok. Life gives us no guarantees, and we just have to be ok with it, and make the best out of what we have. Crohn's is manageable. I am encouraged by the number of new therapies in the pipeline. I know that if my husband had landed in the hospital even 10 years before he did, he'd have come home without 1/2 his colon. Instead, he's home, without surgery, leading a normal life . . . because of the advances made in medicine. So, hold on to hope - new medicines are in the pipeline, and everyday brings us closer to newer better therapies. Oh, and another thing - the medications used to treat UC and Crohn's are pretty much the same. The only difference is that with UC, removal of the colon is a "cure", whereas Crohn's can come back after surgery. You wouldn't jump the gun to surgery anyway - so for right now, the treatment isn't different, and so the choices you have to make are not really that different.
If the biopsy results stated that it was crohn's, and your previous GI told you it was UC, then, she made a mistake. In my husband's case, his biopsy was consistent with UC. A lot of people with UC are later diagnosed with Crohn's - this happens because the diseases can mimic each other - the only way to know for sure is to see those granulomas in the biopsy (however, if the inflammation with crohn's is mild enough, you may not see granulomas in the biopsy). In fact, for some people, they only find out they have crohn's, after they have had surgery for UC to remove the colon, and the disease comes back say in the small intestine! Imagine their disappointment when they are diagnosed with Crohn's after they thought they were through with IBD! As I said, there are no guarantees.
If you've moved on to another doctor who you think you can trust, I don't see how railing against the old one will actually help anything, or change anything. I am still upset with my husband's old GI, who between 2003 and 2008, never did a full colonoscopy on my husband - perhaps we would have known about Crohn's sooner, and could have prevented my husband's hospitalization if we'd known. We just moved on to another GI, whom we trust, and just put the other GI out of our minds. That's just my humble opinion.
You and your son will learn to cope with this diagnosis. And he's going to take his cues from you - so chin up, and be positive, and focus on the silver linings. (((Hugs)))
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Crohn's in Remission since June 2008
C-diff recurrence Sep 2009
Reactive Arthritis Nov 2009
Currently c-diff free
Stomach Flu Feb 2010
Canasa (1gm), Lialda (4.8 gms), Remicade (6 weeks), Pred (5mg every other day)
Hoping to stop pred, and move remi back to every 8 weeks soon
Currently In Remission