Update from Dr. Visit at IU Medical School

hoosier1 · Post by **hoosier1** » Sat Mar 19, 2011 10:02 am

Hello my friends,

Just got back from my appointment with Dr. Rex who is the chair of the GI program at Indiana University Medical School. First and foremost, he has a great personality and so does his assistant! I was happy about that. And secondly, he is extremely thorough and presumes nothing. He also thinks my previous (not present) GI doctor did not handle me well and, in fact, ignored my symptoms.

He is requesting my pathology slides that confirmed my LC so that he can have his pathologist interpret them. IOW, he is questioning my diagnosis of Lymphocytic Colitis, as he has seen pathologists misinterpret the results in the past. How's that for a confidence killer?

He did confirm my pelvic floor issues and wants me to continue my physical therapy and self work. Recall the muscles in my pelvic floor are pretty much in a state of constant contraction and tension.

And he also mentioned, that if I am refractory to Entocort and Asacol (as it may appear), that he may try Methotrexate (a chemotherapy drug) on me (but only once he confirms my diagnosis).

So I am happy I have found an expert that is only 2 hours away from home and seems to really want to dive to the root cause of my problem. He even asked my wife, and only my wife, a series of questions about me. He also wants to address my symptoms in order of the one's that bother me the most, quality of life-wise.

So all in all, Thursday was a good day for me. As soon as I was done with my appointment, I jumped in a charter airplane bound for Beltsville, MD and right when our wheels left the runway, we experienced a severe cross wind that pushed the tail almost 90 degrees around. As a frequent flier, even this one caught my attention. But we pushed through it and climbed above the chop as quickly as possible. And this is why I am home today (Saturday) instead of trying to fly home commercial. One of my new years resolutions was to charter more often so as not to miss so many weekends. IOW, I am trying to slow down a bit. Life is too short.

Hope everyone else is doing well today.

Rich

MBombardier · Post by **MBombardier** » Sat Mar 19, 2011 10:25 am

Excellent report, Rich!!!

Joefnh · Post by **Joefnh** » Sat Mar 19, 2011 11:04 am

What an update Rich, I am glad you found this doctor. I do hope that he can review the data again and help out with a treatment plan that works for you.

BTW the methotrexate is more or less the same as the Imuran that I am taking. If you do go that direction be sure to supplement with folic acid as both methotrexate and imuran deplete that rapidly. Both meds are a purine synthesis inhibitors and are used for chemotherapy and for transplant rejection as they are strong immunosuppresive drugs.

Best wishes Rich

--Joe

Gloria · Post by **Gloria** » Sat Mar 19, 2011 1:25 pm

Rich,

It sounds like this doctor is thinking more outside the box. Did you discuss your diet with him? I'd be curious about what he said.

Gloria

ant · Post by **ant** » Sun Mar 20, 2011 9:01 am

Dear Rich

Many thanks for your update. I hope you have good success with your new Doctor and will be reading how things go with much interest. I admire your tenacity. Handling MC is rather similar to cross winds that turn a plane around 90 degrees !!

Best ant

hoosier1 · Post by **hoosier1** » Sun Mar 20, 2011 9:34 am

Joe, Gloria, Ant:

Joe - Did not know Methotrexate was similar to Imuran. That is good to know. I will be sure to rely on you if it comes to that. Do they monitor your white count on imuran? My WBC runs about 4 so I am always worried about it dropping any lower. My wife was on Methotrexate following her BMT for a spell, but she was already severely immunocompromised from the transplant and the salvage chemotherapy she experienced.

Gloria, I did mention the diet to him and shared my Enterolab results with him as well as my learnings from this group. He wrote down the my gluten numbers, which, according to Enterolabs, I am sensitive too. He applauded my association with this forum and was in agreement that diet for MC is a reasonable course of action for long term remission, though he has not had any patients work very aggressively via diet control. But for me at this point, he wanted to confirm my diagnosis first. So we didn't dwell too much on diet discussion. That will come later if need be. Again, he has not been too impressed with my treatment up to this point.

Ant, you got that right about flying. The funny thing is, is that I am seriously considering taking up flying again as a pilot.

Rich

P.S. Was 55 in Indiana yesterday so I fired up the motorcycle and went for a ride. Spring has not yet sprung as snow is in our forecast for the end of the week but I am tired of waiting for nice weather. And wouldn't you know it, I got a recall notice in the mail for the motorcycle. Sure hope they have parts because the cycle was made in Japan. What a mess over there. Sigh.

P.S.S. Joe, how do you like your new Nikon? Post some pics when you can. A side by side of your 300 vs the 7000 with the sames lens would be cool. I broke down and ordered an Ipad, so that should help me lighten my load immensely when traveling. Hope I don't miss my macbook too much.

Joefnh · Post by **Joefnh** » Sun Mar 20, 2011 3:00 pm

Rich 4k is the low end of normal, I'm surprised he's thinking of MTX. Yeah I have to have my blood checked for a CBC and lover enzymes every 8 weeks now. Early on it was once a week.

I will see what I can put together for a comparison of the D300 vs D7000. Right off its a lot faster and has significantly better low light performance.

--Joe

Post by **tex** » Sun Mar 20, 2011 8:29 pm

Joe wrote:and lover enzymes every 8 weeks now

Your doctor must have been a student of Sigmund Freud.

Sorry - couldn't resist.

Tex

Joefnh · Post by **Joefnh** » Sun Mar 20, 2011 8:37 pm

LOL Thanks Tex... That's one of my better typos

That's supposed to read Liver Enzymes...

--Joe

MaggieRedwings · Post by **MaggieRedwings** » Mon Mar 21, 2011 5:35 am

Rich,

So happy that you have found a doctor who seems to be on the ball re: our conditions and is willing to listen and take a 2nd look at past slides. Wish you well with him and look forward to his determination after reviewing all of your background.

LOve, Maggie

hoosier1 · Post by **hoosier1** » Tue Mar 22, 2011 8:25 am

Joe and Tex,

I am the king of typos, in case you haven't noticed. I swear it is some sort of dyslexia... Has crept up on me after turning 40...

Rich

Joefnh · Post by **Joefnh** » Tue Mar 22, 2011 8:36 am

Rich regarding your question about the D7000 and the D300 checkout this site, some very well thought out test data

http://www.dxomark.com/index.php

--Joe