Monday, March 3, 2008

Another Day in the Life of Crohn;s

So I saw the Dr. Shafran and Patty today. I gotta say these guys (Winter Park, Fl) are the best gasto doctors I have come across in the 13 years I have had Crohn's Disease. Anyways we discussed a wide variety of topics. I need to be Humira free for 3 months before I can start the clinical trial that is Stem Cell Transplant for Crohn's. The trial is actually a 4 stage blood transfusion that I am going to read up on more (and report my findings tonight). It seems pretty low risk, but there is a 1/3 chance I will get a placebo, (what, red kool-aid??) 1/3 chance I get a half transplant (hopefully my right side!), and 1/3 chance I will get a full transplant. I am going for a 3-d Cat Scan next week which will allow them to better see the extend of my disease. As a bridge I am going back on Pentasa/Azulfidine (9 pills a day). I also am going to try Lexapro (10 mg). I have not been myself this past year. I am myself (HAPPY) about 2 hours a week. The rest of the time I am in pain, bummed, tired, stressed and cranky. I also have alot of anxiety issues and fear of death and dying, thought not necessarily dying from Crohn's Disease. Anyways more to come later.

Thanks for the support guys.

4 comments:

Anonymous said...

Scott,

I was wondering if you've tried the anti-MAP protocol since Dr. Shafran is one of the pioneers in this field?

Thanks, and I hope you get cured from this stupid disease.

farawayme said...

My heart goes out to you, even though I am in remission now, I know how low you can feel when the Crohn's is controlling your life.
I felt so low and even if you are genrally a postive person, it can be hard to stay positive.

I hope a sutiable solution is found by your doctors to make life a little easier.

Anonymous said...

Hello I was jus wonderin if the stem cells r workin?? Ive had everyfin the docs ave got but thats 1 fin they aint mentioned (dont fink they do it in england yet)!! Nuttins workin on me, ive had this shitty disease 4 7 years now & not had a break!!
Wud b gr8 2 hear bac from ya Faye x

Faye said...

I left a comment b4 dunno if it worked?? Wud jus like sum advice really?? Faye x

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