I posted the following to the Colon Cancer board last night and really want to share this information here. Although it may be too late for us, I don't want this to happen to anyone else. It just hurts too damn much and could have been easily prevented.

If you or a loved one has Crohn's Disease or U.C. please read what happened to my husband last week. It may save your life.



Hello. I'm new to the boards and need advice and encouragement. This is a long story so I'll make a bullet point type list of the series of events leading to our world being flipped upside down.

2009: First colonoscopy looked like Ulcerative Colitis but it ended up being Crohn's Disease. CT scan of abdomen. Treatment started.

2010: Colonoscopy was not able to happen due to severe inflammation. Treatment plan changed again.

2011: Colonoscopy showed 50% improvement. I breathed a huge sigh of relief. Remission for Crohn's may finally be in sight.

2012: Colonoscopy was expected (by me) to be a little worse because I noticed his symptoms were getting worse. He also started putting his hand on his right side, several inches above where the appendix is.
Colonoscopy and CT scan showed that a stricture had formed by his ilium and it was very inflamed.

2013: Colonoscopy wasn't completed due to severe inflammation again. I was with him so I could drive him and his Dr. again said that it was probably going to be time to have a colectomy. He recommended that if he didn't improve in one year, he have the surgery. He prescribed weekly injections of methotrexate at a low dose.
At his follow up appointment, he was told that his biopsies showed low grade dysplasia (pre-cancerous changes). I'm not sure how they got the biopsies if they didn't do a colonoscopy.

Feb. 2014 (6 months later): Colonoscopy was completed but he is still severely inflamed. We expected this to happen. His Dr. starts referring to the pre-cancerous changes from 6 months ago. He tells him that it's now not a question of if he will get cancer but when. I asked if he could already have cancer. Dr. said that it's possible because biopsies are just random samples.

March 20, 2014: My husband goes in to have a total colectomy. His surgeon comes to talk to me a couple of hours before his surgery was supposed to be finished. The look on his face told me what I feared. My world came to a screeching halt and my heart was shattered when I heard that he has stage 4 colon cancer and has a 1% chance of survival. He gave him about a year. He turned 31 last January.

March 21, 2014 Oncologist walks in the room with a cheerful disposition and for a second, I thought I may have better news. It was slightly better. He thinks that he can give him two years.

The cancer has not spread to any other organs, is not in his lymph nodes, and not in his chest cavity. It is, however, still considered stage 4 because it has left his colon. They told me his cancer is like someone opened a bag of powdered sugar in his abdominal cavity. The cancer is all over his abdominal wall and is all over the cavity. It just hasn't found it's way to his organs but who knows, that may have already happened this morning. They say there is no way to get it out. Why did they miss it? It grew on the outside of the colon. His Dr. thought the cancer he saw on his CT scan was his Crohn's.

My husband has decided to have chemo and has already had his port put in his chest.

Here are my questions:

1. Is there anyone here that has had this kind of prognosis? Does anyone know anyone who has beat the odds? I need hope.

2. Who are the best Oncologists in the U.S.?

3. What are the cutting edge cancer treatments? Do you have any personal experience with them?

4. Do you have any advice on how to help him through this? How can I survive this?

We need help. We need prayers.

Another part of this issue is that he is the one who works. Lucky for him, his lovely wife is on disability. We are scared that he will eventually lose his job and therefore, lose his medical insurance. Does anyone have a similar experience with losing medical insurance during cancer treatment? What can we do?

I'm sorry this is so long winded. Maybe I think if I write enough, I can fix this. I'm not really sure what's going through my head anymore.

Any advice (and prayers) will be greatly appreciated.