I need all the help and input I can get. I have been here for almost 2 solid days reading the posts on your experiences, decisions, appliance choices, powders, pastes, Tic Tacs, etc. Very, very informative and I am so glad I will have a place to come with questions as they pop up.
My story is this. In my first colonoscopy 5 years ago, my sigmoid colon looked like a scraped knee and was first dx'd as UC. The following year my GI, at that time, re-read the biopsy and said, ''Oh, I guess I missed this, you have granulatomous tissue and that means you have Crohn's''. I was put on Sulfasalazine and Imuran.
FF 4 years. Last April, a colonoscopy could not be completed with my new GI due to a stricture in that same area. Scope also showed a stricture in the rectum which my GI stretched. Barium enema showed a large stricture several inches long and the inside opening only as big around as 1/2 of a pencil.
June 2010 I had 10 inches of my large intestine removed with resection. Got along beautifully and surgeon said the area around the stricture looked fine. I was to see my GI for another colonoscopy so he could see the rest of my colon to be sure that was the only bad section. That was finally done the last week of December and we were both completely taken off guard.
Other parts of my colon are a mass of ulcers and scar tissue with very active Crohn's evidence. There is even possibly dysplasia in my cecum, but he was a little iffy on the pathologist report on that one. He said he went about 8 inches into my small intestine and it is perfectly clear.
GI says only options are either surgery with removal of colon, rectum and anus with permanent ileostomy or try Remicade. I think he would really like me to try Remicade, but says he will support my decision 100%.
I am 95% sure that I am going to ''just do it'' and here is my reasoning.
1. I am almost 57 years old - If I were in my 20's or 30's with a whole lifetime ahead, maybe. GI says his oldest patient on Remicade is in their 40's.
2. I am also Type 2 Diabetic w/Neuropathy for at least the last 12 years.
3. My dad died at 54 of Amyloidosis and most likely also had Multiple Myeloma.
4. The horrid expense of Remicade and I know my insurance won't pay all of it.
5. Remicade with it's black box warning scares the beegeebers out of me. I cannot imagine getting sick or even dying from the treatment when I honestly do not feel that bad right now. Sure, I have many bathroom runs daily, nightsweats and joint issues, but I am blessed that I don't have pain with all that damage in my colon.
6. Every single day of my life I have to wear & change pads due to several ''surprises'' daily. With the stricture in my rectum and the periodic stretching of that stricture, I do not believe Remicade or any med will keep that from happening and this may be my biggest deciding factor. Emptying a bag seems like it would be easier than what I deal with on a daily basis.
7. I would never have to worry about any more 2-day preps or colonoscopies or Colon cancer ever again.
8. There would only be a 20% chance with it being Crohn's Colitis that it would show up somewhere else. 80% of those with CC who have their colons removed, do not have it return. That sounds like pretty good odds to me and with developing it later in life, I think that might be even better.
Ok, it is your turn to tell me what you think. I can take it, so don't hold back. Tell me if you think I am crazy for not giving the biologics a chance. I have read some of your comments about the only regret in having a permanent ileostomy is not having it done sooner.
Thank you, CJ