Check for common variable immune deficiency if crohns diagnosis doesn't fit

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discover
New Member


Date Joined Aug 2008
Total Posts : 2
   Posted 1/31/2009 4:24 PM (GMT -7)   
I  was diagnosed with crohns at the beginning of the year, mainly because I was having problem eating most foods and due lots of diaorhea was having problems keeping my weight on.  My ulcers are mainly in the small intestine where all the food is absorbed.  I also had a lot of chest infections and ear problems.  I had an ulcer on my leg which wouldn't heal (6 months trying)and was assumed to be a pyoderma gangrenosis, which is associated with crohns,
 
I had a lot of chest infections also.  Now weigh only 35 Kgs and my goal wieght is at least 50kg.  I found none of the crohns medications helped me exept prednisone which most doctors don't like you on full time as it can damage your pancreas.
 
I recently found a lump on my back which has been confirmed as T cell lymphoma and it turns out the ulcer on my leg was also lymphoma.
 
I have tested positive for common variable immune deficiency,  can also look this up as CMV.  The drugs I am being given to help is ganciclovir and intragam The intragam is to improve my IgG levels which are lower than they should be.  This is improving the gastro problems although it will probably take a long time to get on top of it all, just starting the eat slowly as I recently had a campholorbactor infection also.
 
So definitely worth checking out the IgG levels and also whether you have common variable immune deficiency.  I still have to do the chemo for the lymphoma but at least I have the other drugs to assist the whole process.
 
Hope this helps for some of you suffering out there.

gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 2/1/2009 6:29 AM (GMT -7)   
Hi Welcome to Healing Well,glad you joined us, and thanks for the info. Hope your treatment goes good for you and you feel better soon. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 2/1/2009 6:35 AM (GMT -7)   
Hello Discover!

Welcome to the Forum! I am sorry to hear you are having to deal with so many issues. Sounds like you have been through a lot. I'd be interested in learning more about your condition, if you are willing to share. Like what Crohn's meds have you been on?

Thanks!
Diagnosed with rectal Crohn's in early 2007.  Several peri-rectal abscesses and two fistulae with setons.  Allergic to Remicade and Humira.  Currently on 6MP, and vitamins D and B-12.


Becoming undone
Veteran Member


Date Joined Jul 2007
Total Posts : 927
   Posted 2/1/2009 12:09 PM (GMT -7)   
Discover...just FYI
CMV is a different entity from "common variable immune deficiency". Cytomegalovirus (from the Greek cyto-, "cell", and -megalo-, "large") is a viral genus of the Herpesviruses group . Many people who are immunosuppressed will develop CMV (I worked with lung transplant clinical research, this is quite common and treatment with antivirals as well...even decided to treat prophylacticly.)

I hope things go well for you...take care...

discover
New Member


Date Joined Aug 2008
Total Posts : 2
   Posted 2/12/2009 6:17 PM (GMT -7)   
FallColors said...
Hello Discover!

Welcome to the Forum! I am sorry to hear you are having to deal with so many issues. Sounds like you have been through a lot. I'd be interested in learning more about your condition, if you are willing to share. Like what Crohn's meds have you been on?

Thanks!

Sorry to take so long to reply, have been back in hospital again.  Over the last eighteen months I have been on prednisone, pentasa, Azathioprine and finally had 3 doses of infliximab.  I am also on a drip 15 hours a day which gives me nutrition (TPN) I have only had this for about 2 months but it has stabilised all my nutritional deficiencies and between that and eating carefully I am actually starting to put on a bit of weight.  The key to my problems seems to be that my immune system is shot and this is why I have so much inflammation in my bowel, lungs and eyes.  The doctors hope that having the anti viral medication will kill the virus which is causing the inflammation.  I am no longer taking any crohns medication, except the prednisone which is part of my chemo treatment anyway.
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