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cheyennegirl
New Member


Date Joined Jan 2009
Total Posts : 2
   Posted 1/18/2009 10:47 AM (GMT -7)   
Hi everyone-
 
My fiance was diagnose last October, he is 20 years old and the gi thinks he's had CD for 15 years now... The reason they finally figured it out was he get these "abscess's" on his legs, they start out small, gradually get bigger with infection, at this point walking is very painful, and they burst making a nasty and painful mess.  He was pretty much down and out for 3 days because of the last one..  One doc called them ulcers, the skin doc thinks its PAN (polyarterosis nodosa) the gi doc says it is chrones.  The skin doc is the one that finally sent him to get a colonoscopy because a side affect of PAN is bowel issues...  Anyone experience anything like this?  They do seem to be better when the CD is under control, but he is on nothing at the moment, had to stop using 6mp becuase he was one of the lucky 1 in 200 that is allergic and got pancreatitis.  The insurance is stalling about paying for the Humira, so we've been waiting for weeks to recieve that..  Just wondering if anyone knows or has experienced anything like this.  It's getting out of control and the gi doc just tells us to wait for the humira...  Not very helpful. Thanks!
 

FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 1/18/2009 11:43 AM (GMT -7)   
Hello Cheyennegirl,

Welcome to the forum! I'm sorry to hear your fiance is having problems! Does he have any bowel issues or just leg sores? I've heard of sores as a manifestion of Crohn's disease (CD), but I've not heard of a case where they are the only symptom (but it certainly could be true -- CD can be very different in people). Have the other docs done testing to determine whether it is PAN?

Also, did his GI doc have his blood tested for the essential enzyme before starting 6MP? As for Humira and other expensive treatments, insurance companies may not be swift in their approvals. Your GI doc should be on top of it and speed things along.

Hope he gets the right treatment soon! He sounds miserable!
Diagnosed early 2007 with rectal Crohn's.  Several peri-rectal abscesses and two fistulas with setons.  Allergic to Remicade and Humira.  Currently on 6MP.


cheyennegirl
New Member


Date Joined Jan 2009
Total Posts : 2
   Posted 1/18/2009 12:00 PM (GMT -7)   
Thanks FallColors :)

Yeah he has all the "normal" chrones symptoms, severe diarrhea, abd cramps, had a fistula 2 months ago. The gi doc is helping there, it's just the leg sores don't appear to be important to him at all, but are causing more pain and problems than the rest at the moment. The skin doc did some blood tests that say it is but every doc we talk to just kind of says "oh, well. could be..... " He was checked several times for the enzyme, I don't know why they didn't figure out 6mp would be bad before the pancreatitis, but oh well, it's over now. His gi's assistant is very on top of things, I'm just not very patient..... ha. And he's been through several medications that haven't worked so we're anxious to see if the Humira will help..
My fiance was diagnosed with CD in October of 2008, but is suspected to have had it since he was 5.  He is currently on no medications, waiting for insurance to okay Humira.  He has just started the SCD diet which has helped, he feels better already.  We are new to this disease and would value any information you have!


sammies
Regular Member


Date Joined Feb 2008
Total Posts : 493
   Posted 1/18/2009 2:23 PM (GMT -7)   
when I was 13 I had the sores--they were finally a clue that I had crohn's. Antibiotics---maybe an ointment--helped. One of my crohnie friends had the same. best of luck!!
23 years with moderate Crohn's/colitis; fistulizing crohn's; pentasa; started humira 7/1/08; cipro; supplements: MSM, e, selenium, C, B complex, multi, iron


FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 1/18/2009 2:44 PM (GMT -7)   
Hi Cheyennegirl,

Sounds like he has really been through a lot! Blood tests for 6MP showed I was on the low-side for the enzyme. So my doc started me off on a smaller dose than normal. I haven't had any problems, but I understand that you still can get pancreaus issues. Unfortunately, it can take a while to find the drug(s) that works for you -- and you may have to switch later on. Just look at the diversity of meds taken by folks on this forum.  And it must be hard on loved ones watching someone struggle while in searching for the right therapy.  Thanks for being there for him!  I hope Humira works for him! 


Diagnosed early 2007 with rectal Crohn's.  Several peri-rectal abscesses and two fistulas with setons.  Allergic to Remicade and Humira.  Currently on 6MP.

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