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.


Anonymous said...


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

Crohn's Disease Blog