crohn's from head to toe

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Regular Member

Date Joined May 2005
Total Posts : 166
   Posted 2/16/2009 11:46 AM (GMT -7)   
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, 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?

Regular Member

Date Joined Jan 2009
Total Posts : 126
   Posted 2/16/2009 12:07 PM (GMT -7)   
I have not had a bad colonoscopy like that but they have told me that i have crohns in my small intestines, all thru my colon and, my rectum. i havent had any test to see if it is any where else but ... I have sores in my mouth and in my nose so i can only guess that it is in my nose and mouth too... o well the dr did tell me that I had facial colitis(that is what he called the sores in my nose)

I am so sorry that your colonoscopy went so bad ... hopefully the one on march 9 will go better !!!

good luck and God bless
> 27 year old female < 
 > Diagonsed with Crohns disease in 2000 <
 > In 2009 I was told my Crohns is Crohn's Colitis ~ they said it was in my rectum, colon and all through my small intestine <
 > Medication - pentasa(4000mg), imuran(100mg), prednisone(40mg 30mg), vitamin C, multivitamin, b-12, iron, and fish oil <
> I thank the Lord every day for my amazing husband and wonderful family <

Elite Member

Date Joined Feb 2004
Total Posts : 20577
   Posted 2/16/2009 12:33 PM (GMT -7)   
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?

My bum is broken....there's a big crack down the middle of it! LOL :)

Elite Member

Date Joined Sep 2005
Total Posts : 10404
   Posted 2/16/2009 3:08 PM (GMT -7)   
I've had what they called "top to tail" Crohn's before, but I don't think it was as bad, scarring and continuous as yours. It might encourage you to know that mine (that time) went into spontaneous remission, so perhaps the same might happen to you.

I'm so sorry about your colonoscopy. That sounds incredibly brutal.

Co-Moderator Crohn's Forum.

Regular Member

Date Joined May 2005
Total Posts : 166
   Posted 2/18/2009 7:43 AM (GMT -7)   
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. 

Regular Member

Date Joined May 2007
Total Posts : 69
   Posted 2/18/2009 9:06 AM (GMT -7)   
Hi v.scho! I am starting to look for possible clinical trials for my 19 y.o. son who is starting to fail on Humira. He was on Remicade for a year and a half until that stopped working and is now on Humira every week with limited success. He is not a surgical candidate since he has disease throughout his digestive tract. How did you get directed to NIH and how did you or your physician choose this study? Thanks for any input.

Regular Member

Date Joined May 2005
Total Posts : 166
   Posted 2/19/2009 11:30 AM (GMT -7)   
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.
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