amazement
I'm quite shocked at how many people don't fully understand the disease...even the ones that have it!?
Panda (and anyone else reading this that hasn't), if you haven't already gotten a food allergies test ordered by your MD, do yourself a favor and find that out...it could save you a lot of troubles in the future, whether you have an IBD or not! In canada, I think this test is free of charge (covered by your provincial healthcare), not sure anywhere else in the world. Most people are allergic to milk products (as humans weren't meant to consume milk from another animal), however, there may be something simple that you're allergic to that is causing some of your troubles.
It's also worth getting a comprehensive stool diagnostic test ordered by Genova Diagnostics (used to be Great Smokies Lab) by your Naturopath to make sure your issue isn't a simple bacterial infection.
Something else worth noting, if you live in a smaller town that doesn't see a lot of Crohn's and they diagnose you with it, if they didn't biopsy your ileum to test for MAP infection while they were doing your colonoscopy...if you go on prednisone, and it makes you really ill, ask for them to biopsy your ileum to test for a MAP infection (MAP can be tested in stool, but it's very complicated and often the test results are inaccurate). MAP can simulate Crohn's very closely, and the prednisone issue is a big indicator (so my G.I. team has told me). MAP is floating around the "net" as being the cause of Crohn's, but it's a farse...most good G.I.'s biopsy and test for that first thing.
As far as other things go, it's important that you know the progression of the disease (you can be fistulizing inside, and not know you are). This is done by getting a good G.I. team looking after your best interests (not their wallets)...and can sometimes be really hard to find (especially in smaller towns). Also a G.I. team that can explain what's happening on your level...my nurse practicioner draws pictures, I love how she takes all the technical doctor speak and turns it into a drawing a child could understand!
If you're anywhere near Calgary, Alberta, I would strongly recommend Dr. Remo P. and his staff, they have your best interests in mind, and have access to all the recent clinical trials/research and whatnot if your CD (or IBD for that matter) is that bad.
I have severe CD, and they have a positive outlook on my future with the disease (without bags, and with a "normal" life). Before these guys, I have seen about 4-5 different G.I. groups and they should all be lifetime members of failblog! (told me I would need surgery and have large pieces of my intestine removed). Now I'm being told that if I was put on remicade day 1 after diagnosis, I would probably today be living a normal lifestyle!
Panda, I have nothing against ND's, in fact, I have one, and an accupuncturist who specializes in chinese medicine, and a chiro, etc...however, you need to know what the disease is doing inside (CT scan, barium follow through xray exam, ultrasound, colonoscopy, etc.) to be educated on what your body is doing...especially if you get abdominal pains that cause vomiting or a fever (as this can mean that a fistula has ruptured and caused an absess, or it could simply mean that your appendix has ruptured!). If you're one step ahead of the disease in my experience, you will have more options for treatment.
I'm trying the ultrainflamx (or the new 360...not sure the difference...gunna check with my chiro on that one) before I have to go in for surgery so that I can make it as tidy as possible in there so that the surgeon doesn't have to "hunt and peck" so to speak. If you want to know how I'm doing on it, fire me a message on here, I'll reply.
I could go on, I hope I have been some help to at least one person, I don't want to come across as preachy, but I wanted to disembowel (forgive the bad pun) some myths.
i don't think i welcomed you when you first joined, sorry.
