crohn's from head to toe

does anyone have crohn's thru out their entire digestive tract?  I'm in that stem cell study right now and they ran every test you can think of.  the drs here say that they've never seen  such wide spread disease, that crohn's usually devastates an area, it's removed then  it moves on.  Mine is in my mouth, esophagas, stomach, all thru small intestines, all thru colon, rectum...you get the picture.  my colon has shrunk to half its size due to disease and scarring.  they're killing me with these tests.  during the colonoscopy the dr got "lost".  He couldn't find the end of my colon (even tho my dr sent him the results of a colonoscopy he did on me last Nov showing the size of my colon)  The dr. ended up 20 cm in my ileum, which sent me thru the roof and told me that he couldn't find the end of my colon.   They have me scheduled for another one on March 9 but now I have post traumatic colonoscopy stress syndrome!  It took me a week to recover from the last one because all the added sedative they had to give me followed by an upper endoscopy completely paralyzed my intestines.  None of the air would begin to pass for 4 days.  I was curled up in a ball on the floor and miserable for a week.  Has anyone gone thru this?

Oh v.scho I'm so sorry for what you're going through...I haven't had it in the stomach or esophagus but I have had it affecting my colon, TI and anus all at one time...CD can affect more than one area at a time so that is not unusual but I know that it doesn't affect the stomach or esophagus very commonly, obviously not that it can't just that it's not common. From what I've heard they use pred to treat in in those areas that you are having issues with. Is that what they're treating you with?

:)

Now that I'm in the clinical trial, I'm not allowed to add any new meds, even over the counter, until it's through.  They know that I could use a blood transfusion, but they want to analyse my blood for this study and do not want to hinder the  results in any way.  My hemoglobin is 9.1 and blood is being drawn every week.  So far they've taken 23 vials of blood in 3 weeks.  I'm drained.  I have to say that I'm beginning to feel better as far as the pain goes.  The frequency is still the same (7-10 x/day - with no control, all accidents).  I have to decide if the next colonoscopy is worth going through for a 1 in 3 chance of getting a placebo. 

just go to the NIH web site and click on clinical trials.  You can also go thru Osiris.  They have trials set up all over the US.  They both responded quickly when I filled out the questionaire.  Hope it works for your son.