Monday, November 23, 2009


My first specialist helped me get through the initial diagnosis 13.5 years ago when I was pregnant and terrified. He helped me maintain relatively good health over the next 11 years. He always listened and I liked him. And that's even after he looked at my complexion and said, "Just like my wife. You will likely have hair growth from the Pred. Just don't shave."

What he didn't think much of was probiotics. As a result, I didn't have any guidance in the matter. I went to Costco, found a big bottle of something that looked good and bought it. I have been taking one pill a day for months. Last month I ran out. I didn't rush out to buy more because I didn't really think that the one pill was doing much for me. I am now not so sure.

After over a month without the probiotics, things are changing. I have started to need multiple bathroom trips per day and I am having some pain. No tears. No blood. Things aren't at a crisis but I am wondering if something is brewing.

I am also wondering if it is a coincidence that this has happened after I went off the probiotics. Lots of things are a little off, most noticeably, my ability to maintain a balance in the fungal matter in and on my body. That is terrible. It is also something I suffered from for a couple of months at this time last year. Just 2 months before my illness got out of control. Are these things related? I don't know that either.

I have ordered a probiotic off of the internet. My partner is a scientist and last week he met with many doctors doing research in the area of crohn's and colitis. One of the specialists recommended this type. She indicated that her patients had great success. It is VSL#3 (for the Canadian site). It arrives tomorrow.

Has anyone used it?

Friday, November 13, 2009


I went to meet a new doctor today. I was the first appointment of the morning and I didn't have to wait. He was on time and friendly. He noted that I had already seen a GI in my new home town and asked what had gone wrong. I told him the first one was such a big specialist that there didn't seem to be room on my health care team for me. He said that he was also a specialist and we would have to see if this would work. He grinned. He asked who it was and I told him the other doctors name. "Oh! He has an office right down the hall."

He took a history. Asked lots of questions and was impressed with some of the details that I could share. He told me it was okay that I adjusted my meds as I noticed changes but that I have to be careful this soon after such a major flare. He did not tell me that I should take more. He did not question that the meds were making all of my hair fall out. He gave me a book to take home and he had an open mind about probiotics.

He did not question my diagnosis or change it.

He did think it was important that he see exactly what is going on in there at this point so I am once again scheduled for a scope. And just to keep things interesting, this doctor prefers a different prep than my old doctor. I liked the old one. It was easy to use and palatable. This new one requires that I drink 4 liters of fluid. I don't know the name of it but I am sure that will be fun day. It won't happen until January.

All in all, this was a good first appointment. I will go back to see him again. Good news.