For one, I am so VERY glad this forum exists, and for everyone involved!!!

Anyhow, down to business:

THE GOOD
I am sort of in remission!! I only have problematic bowel movements and swelling in just the rectum maybe 2 or 3 times per week! I have had UC for about 2.5 years, for the first year it was about 15-30 times a day, then with azathioprine and Remicade it was down to 5-8 BMs daily. I started having joint pain and swelling in my hands and feet and started seeing a Rheumatologist, who added Methotrexate. It seems like the Methotrexate, a rheumatoid arthritis drug (and chemotherapy drug when used in high doses) almost totally has the UC controlled. I've been on the Metho... for 7 or 8 months now. My doc played with lots of other drugs, but only the ones I mentioned didn't have crazy side effects or eventually stop working. (I'm also using probiotics with success)

THE BAD
I have been getting headaches more and more often. I have been having a lot of trouble concentrating. My reaction time is getting much worse, I feel "out of it" a lot. I've recently (in the last 90 days) been getting infections, which has been super rare for me. A urinary tract/prostate infection, and now sinus.

The weird-head symptom are getting really bad. Most of the time I can't drive. Occasionally it hits when I'm out of the house, and I have to call my wife for a ride home. It's happening more and more. I rarely drive now. All this started when I began the Methotrexate, but it began mild, and progressed. (I have lots of blood tests, every few weeks, the docs say all is well on that front)

My docs (GI and Rheumatologist) seem to always understate the danger of these drugs. My general doc and pharmacist approach it differently, they always tell me how cytotoxic the Metho... can be, and how bad a lifetime of all the drugs can be.


My general doc thinks I need to go to a neurologist, because I might have either a neurological problem, a fungal infection in my brain, or something else related to the immunosuppression. He feels that the drugs, even though the dosages are the same, are suppressing my immune system further and further.

My GI says that my colon now looks good enough that there is no way any surgeon will operate, so the surgery route seems to be closed...

Anyhow; Has anyone been dealing with these problems? Specifically the foggy-headedness? The danger driving a car? I am really getting worried and concerned. I have NEVER had problems like this. I have always had headaches, but never the infections, the slow reaction time, the lack of my wits. It's scary.

Has anyone experienced an increased level of immunosupression as time goes on? (maybe mine is a fluke, and I just weirdly got sick, who knows...) Is there evidence that the drugs we normally use for UC can keep suppressing out immune systems further and further? I have not been able to find and documented evidence of this ( I haven't looked TOO hard for any, though) but both my general doc and pharmacist said it's possible...

Yes I'm still on all the those drugs.

GI feels that I should stay on all the drugs for the rest of my life, unless some other better drugs come along. That prospect scares me, considering the weird side-effects I'm having.

He is actually really supportive of my desire to look into the surgery, and has told me on many occasions that he'll fight for me to get it if I choose to try. But he thinks that, from the may my recent colonoscopies look, that I probably can't find a surgeon to do it.

I wonder about some of my new "issues"!
I was diagnosed in July 2007.
I can count on my hand how many times I went to the doctor in 7 years from 2000-2007...3!
I now am at the doctor once every few weeks...since being diagnosed I have had blood clots, kidney stones, UTI's, I just ache/hurt! I do fill that I am falling apart at such a young age! I think everything goes hand in hand, although, I wish it didn't!!!