While not common, it is not unheard of for a UC diagnosis to be converted to a Crohn's diagnosis. This is definitely an issue in the pediatric population although still not a frequent event. This seems to be because it is more typical for pre-teen and younger children to present with UC-like inflammation in the colon making an accurate diagnosis difficult.
I think the doctors aren't sure yet if these cases actually change in some way over time - i.e. go from something that, biologically, is more like UC and then develops into full blown CD or if the CD was "missed" to begin with. It can be much harder to diagnosis CD in the small intestine since they can't scope that part of the body so I'm not sure they will ever really be able to answer that question.
There is an on-line support board for parents of IBDers called Dragonpack. It is not a Healingwell board. I highly recommend it.www.dragonpack/ibdsupport/parents/
The woman who runs DP single-handedly has a sick kid and I'm not sure how long it is taking for your request to post to the board comes through. But you can read the posts, search the archives and I would be happy to post on your behalf. Just e-mail me.
There are at least 3 or 4 parents on DP whose children have had colectomies due to the severity of their disease presentation and whose diagnosis has changed from UC to CD or have an IC diagnosis and have or are facing surgery.
I can only imagine how you are feeling - especially your son.
My son was diagnosed at age 10 but had been sick for quite a while. The ped gi who diagnosed him initially thought he had UC or only mild CD of the colon. But biopsies from his colonoscopy showed features more characteristic of CD than UC and about
3 months after he was diagnosed it became clear that he also had small bowel disease, clinching the CD dx. It took a couple years but my son is now in really solid remission after 2+ years on Humira combined with first 6-MP and later Methotrexate (MTX). He is stable on MTX now.
I know others on HW will no doubt reassure you on this point, but there are people with Crohn's walking around doing pretty well who had colectomies - either because their original dx was UC or because the disease in their colon was so bad surgery was really necessary. The ones I have spoken to have been universally positive about
having had a colectomy because their disease presentation was severe and the surgery made a huge improvement in their quality of life.
That said, it is true that you son will now require long term maintenance treatment once he is in remission again.
You say that none of the drug treatments worked and he became allergic to Remicade. What has your GI recommended for treatment for your son at this point?
son now 15, dx CD age 10; current meds: MTX and omeprazole; previous tmts: pred, 6-MP, Humira, entocort, GMCS, exclusive enteral feeds, pentasa, mesalamine enemas, cipro, flagyl, many topical treatments for perianal disease
sister, late 40's, short bowel syndrome, TPN w/lipids and vits, severe malabsorption, poor fluid retention, severe complications from malabsorption including retinal damage.