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Keeper
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Date Joined Jun 2008
Total Posts : 1058
   Posted 9/7/2009 1:46 PM (GMT -7)   
JD23 - it looks to me like your really awful symptoms may be due to SLE (lupus) of the gastrointestinal tract. Since there are many medications that can cause SLE, you really need to review this with your doctor. It may be possible to get complete remission by stopping the medication. In any event, surgery should not be necessary since SLE can be treated. Please have a look at the link in the last reply in: HealingWell

It contains an article describing your symptoms as a result of SLE of the GI tract.

JD23
Regular Member


Date Joined Apr 2008
Total Posts : 131
   Posted 9/7/2009 3:09 PM (GMT -7)   
Keeper!!! Yes, thank you for your information. I just read it in the other post below and was going to respond...

Can I ask what medications you are referring to that may be causing this? I actually meet my GI tomorrow and for the first time, the surgeon. I'm getting all my records ready as we speak. I cannot find the link that you posted regarding SLE. What makes you think I might have this?

Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 9/7/2009 8:24 PM (GMT -7)   
The link is in the other thread, but here it is again: http://www.sma.org.sg/smj/4208/4208e1.pdf

It lists a number of symptoms in "Table 1. Gastrointestinal manifestations of systemic lupus erythematosus." for different parts of the body. Under "Large & small intestine" it mentions "Pseudo obstruction" (and chronic pseudo obstruction in the article) and "pneumatosis cystoides intestinalis" - two of the more prominent features of your diagnosis.

There are over 600 medications that can cause SLE, so it would be hard to say which one it could be. It is usually one of the immune system inhibitors though. You will have to ask your doctor about this. It is remotely possible that you have SLE (and not med caused) as well as eosinophilic gastritis, but it seems to be very rare to have both.

JD23
Regular Member


Date Joined Apr 2008
Total Posts : 131
   Posted 9/8/2009 11:17 AM (GMT -7)   
Keeper...

YOU DON'T KNOW HOW IMPRESSED I AM that you found this!! My family cannot believe how they think you might have nailed my situation.!!!
And the scary thing .. is that Lupus Leukemia runs on my mother's side of the family and her grandma died because of that.

YOU ARE BETTER THAN ANY DOCTOR I HAVE SEEN, and I"ve been to them all!! Thank you thank you thank you!! How did you find this or know about this? Like I was wondering before, what medical problems do you have that bring you to the Crohn's forum?

I'm meeting with my GI today AND LATER.. MY first time meeting a surgeon and I printed this article out and I'm going to show them this..both doctors!!

Who knows, right?
and to let you know... this is not a drug induced situation for me, since I am on NONE of the medications listed or causes, so thats where i'm confused and why i think i MIGHT NOT fit this diagnosis.

Are they saying surgery is the only way out? I'm trying to understand these terms here.. I do know they said the mortality rate is high, but waht do you do? Even if your OFF all those meds to be a potential cause???

THANK YOU AGAIN!!!!

Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 9/8/2009 1:31 PM (GMT -7)   
Well, when you wrote about your neutropenia, I Googled that and noticed a connection between that and lupus. Then Googling lupus and intestines, I found the paper that described lupus focused on the GI tract. The symptoms just seemed to fit what you said they found at emerg. The idea that it might be drug-induced came from several people at this forum reporting cases of lupus from the meds they were on. You may have lupus without the meds, but I was hoping that they might be able to eliminate the med causing trouble and it would then go away. That works for most drug-induced lupus, but if it is not due to your meds, they can still treat it. The only question is, has it been spotted soon enough to avoid surgery? All this assumes that it really is gastrointestinal SLE....

BTW, as I said before, there are over 600 meds that can cause SLE, so don't rule that out too quickly.

JD23
Regular Member


Date Joined Apr 2008
Total Posts : 131
   Posted 9/8/2009 6:19 PM (GMT -7)   
Update to Keeper-
 
So i saw my GI first today... showed him the article and he barely spent more than 5 seconds taking a look at it and handed back and said he didn't think I had lupus but was going to test me for it anyway.  He didn't say much about the entire finding of the article WHICH SHOCKED me.
 
Next, I saw the surgeon finally.  Obviously i do not need emergency surgery and he said he wouldn't take my case anyway unless he had a team of 4 or more so professionals that would help him because of my dire medical condition.  He told me in all the years of doing surgery and being the Chief of UCSD medical research center, he's never seen a case so complex like mine and said I need MULTIPLE DOCTORS asap.  He said regardless i would not even be a candidate for surgery because of my weakened health state he doesn't see me making through a surgery.
 
anyway... so i'm a little upset to hear all this AGAIN and i'm really anxious and need to calm down but just wanted to tell you.
 
thank you for all your help!

Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 9/9/2009 8:32 PM (GMT -7)   
Well, I guess that doctors are used to getting all kinds of people coming in with internet diagnoses - they browse until something catches their attention and get all excited. Doctors really don't like patients telling them what the diagnosis should be! At least they are going to test your for it. I hope they work out something effective that they can do for you and soon.
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