Happy holidays all. Have a great holiday season wherever you are reading this from!
Further to a post or two I made back in the spring of this year... I had my j-pouch surgery 17.5 years ago. I have never really noticed a huge difference in my health since then with the exception of the regular 'pouchitis' or so it was diagnosed. Whatever causes my inflammation to happen -- and the precise location(s) has not really determined very well over the years. Bottom line is that even though I have been taking a total of 360mg of codeine daily since January of 2001, I still have a ton more bowel movements daily than the average citizen. How many?? Lots. Do I count? NO. Some days are a lot worse than others.
Over the past year and a half I started seeing a new GI as my family and I re-located to a different province. After doing a couple of scopes over several months, he determined that I had Crohn's disease, not Ulcerative Colitis as I was originally diagnosed. He claims that my inflammation is not restricted to the large intestine and can also be seen in other parts of my digestive tract. Did I always have Crohn's - but it was initially misdiagnosed? Or did my UC later develop into Crohn's? No idea...
I have not noticed much difference in my health over the years since my 2000 surgery. I still struggle daily with the number of bowel movements etc. My new doctor felt that it was important to try treating my condition because he felt that continuing along the same path I have been -- with a diseased colon -- was a dangerous thing to do. So, I agreed to try Humira over a year ago. Unfortunately, the Humira didn't do anything at all for me. It was later determined -- without explanation -- that only a tiny percentage of the Humira was entering my bloodstream via my self-injections. So, after about 4 months, the doctor had me stop the Humira. He then recommended Remicade, which I have yet to try. Since we re-located again this past summer, I decided to wait until getting settled. I have still not gotten around to seeking medical assistance on this matter. It also appears as though my family and I will be re-locating once again at some point in 2018.
I am not sure what to do. Obviously I have learned to live with my condition and with lots of codeine daily. So, I am not sure if I want to try an intravenous drug that I honestly have little confidence in. Can anyone give me some 'patient advice' on this issue? Obviously, I could go see another GI but I am not sure he/she knows better than some patients who have tried Remicade themselves... Sometimes, the patient knows best.
