Posted 10/1/2012 5:09 PM (GMT 0)
I'm in a somewhat similar boat to you, so I'm certainly feeling your pain. Think it's worse for you, though, because you're 16 years younger, which means 16 more years of dealing with this rubbish. Anyway, I've too been through all the meds to no avail - apart from steroids which fix me up temporarily, but don't stop the flare-ups from returning. Over the past year I've spoken to a colorectal surgeon a couple of times already, and have an appointment with her next week: barring, like, a burning bush or something, I'm going to make a date for surgery.
Re the ostomy question. Because nearly all of your large bowel is affected, it's possible you could end up with an ostomy actually... :-/ I have had the same problem: my disease is located in the TI and throughout the whole colon. This means that if the TI is cut out, there is no healthy portion of the large bowel to reconnect it to. Surgeons won't join healthy tissue to diseased bowel because it massively increases the risk of complications, in particular, the anastomosis (join) coming apart, leading to infection, sepsis, etc. That really only leaves the option of an ostomy, tbh. By the way, if the surgeon suggests an ileo-anal pouch (aka j-pouch), run for the hills and seek another surgeon. You have small bowel Crohn's, and the j-pouch is utterly ruled out for that. (The reason being the j-pouch is made from the end of your small intestine: the Crohn's would simply come back in it.)
Who are you seeing on the 15th, a GI or a surgeon? Forget about your GI not believing in surgery: he's not the one who has to live with the disease, to be quite honest. If you want to arrange an appointment with a colorectal surgeon, the GI cannot stop you. An appointment does not mean committing to surgery: it just means discussing the surgical options available to you. You are free to choose or not choose surgery, unless it's an emergency situation.
If you do decide not to have surgery, then there are a few non-conventional treatments you can try. A liquid diet; a course of anti-MAP antibiotics; etc. I have tried a liquid diet (Ensure would do at a pinch - doesn't need to be anything fancy), and, not to be discouraging, it didn't really work. Does work for some people, though, so it's always worth a try, imo. Anti-MAP antibiotics are an attempt to kill off MAP, the bacteria thought by some folks to be the cause of Crohn's disease - an Australian gastroenterologist, Thomas Borody, has had some impressive results with this treatment. If you're interested I'll provide some more info, or you can always google it yourself.
Be aware your GI may not know much about the two treatments I've just mentioned - not all GIs keep themselves informed of developments outside of the box, so to speak.
There's even more obscure treatments than those, but I'm keeping to vaguely plausible stuff here, stuff that you could really do. Helminth therapy, for example, is not an example of a viable treatment, even though there has been some promising results from it.
I hope this helps a teensy bit.... :-/