I felt like posting this today, it is good news, me thinks.
I am moving forward with remicade, I have not yet had an infusion, but I am getting really close. I don't think that my new g.i. doctor will be able to find active inflammation, but that is not going to seem to matter. Finding active disease, either through bloodwork or colon tests, is a necessary step before remicade is used.(In most cases). My new g.i. has already assured me that is not going to matter, remicade is in my near future, and you know what, I believe him, I have some faith, finally. I think it is because this guy has been all action so far, not much talk. I want to say I have been chasing remicade for six or seven years now, and I feel like the horse chasing after the carrot. Does he ever get to eat that thing?
I had my TB test on Tuesday, then came back to let the nurse look at the injection site on my arm on Thursday. No TB. Chest X-ray too, no TB.
When I left out on Thursday, the nurse told me that another nurse would call me next week, that nurse handles the remicade infusions. I left their office with a little tear rolling down my cheek, I am expecting to wake up from this dream, but so far so good. :)
I am also working with a surgeon I trust, yes, that is right, I am getting serious about this. I have been working with him the past year or so, having him remove lipomas from my arms, head, legs, butt, etc, the one in my head(on my forehead I mean) was a nightmare to cut out, but he did it, without much scarring too.
(copied from wikipedia.com) A lipoma is a benign tumor composed of fatty tissue. These are the most common form of soft tissue tumor. Lipomas are soft to the touch, usually moveable, and are generally painless. Many lipomas are small (under one centimeter diameter) but can enlarge to sizes greater than six centimeters. Lipomas are commonly found in adults from 40 to 60 years of age, but can also be found in children. Some sources say that malignant transformation can occur, while others claim that this has yet to be convincingly documented. I seem to grow these things, about one every 2 months, they are not a big deal as long as they are cut out, and not allowed to grow. My surgeon said he has seen them the size of a grapefruit in people, and by then it is a major surgery, I was on the right track getting them out while they were tiny.
I found out last week, while having a lipoma removed from my arm that he does major surgery, colon surgery, bariatric surgery, all kinds. He was kinda upset that he didn't get to do my gallbladder surgery in April, but when I told him I really didn't get to pick who did it, my g.i. doctor called up one of his buddies, he understood. I know I have at least one stricture in my colon that is giving me horrible nausea. I think strictureplasty could help me a great deal, I just need it to be more open, and not having it close shut at times, like I think it is doing. I remember a previous g.i. I was seeing in 2002-2004, he would scope me, dilate the stricture, then tell me that inside my colon, inside this stricture, it was the size of a pencil, and that was 5 yrs. ago. It doesn't seem to be inflammed, they never find any inflammation when they scope that area, it is also close to my rectum, so I am afraid of a resection there.
Strictureplasty may be the answer. It somehow, someway, I don't get it, I have looked at pictures, and read alot, I don't get it, but somehow it cuts on the scar tissue in the stricture, and allows it to be more open when it heals back up. There is no loss of colon, not much anyways, and no need for a resection, healing time is greatly increased.
I am setup for a colon test the middle of this month, by my new g.i. doctor, he will doing this test himself. I hated this idea at first, I just went through one of these in September 08, but then I realized I could use it to help me to help myself to fix my stricture. I am going to take those results to my surgeon, where I will have a current, updated picture of the stricture, and see if he is interested in strictureplasty, or if he knows someone who is. I really think he will welcome the challenge.
I do wonder how wise it is to have surgery, after I start remicade, it will be done Laparoscopic. Or should it be done before I start on remicade?
I am not sure about that one, but will find out soon enough.
I guess I am realizing my time is here, finally, I get my chance, so I had best take advantage, and at least try to be a compliant patient...
Thanks for reading my post.
And I hope you guys have a great 4th weekend.
CD dx @ 13 (1987)
Prednisone 20mg every other day
Zantac 150 - Twice Day