Is there anyone with ibs dx'ed with lupus ?

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bhkhhh
Regular Member


Date Joined Jul 2006
Total Posts : 245
   Posted 10/14/2006 6:38 AM (GMT -7)   
I've been having bile d & also a rash across my chest. I went to dermatologist & she tells me that 2mo ago my ana was positive but it was a low tilter, but with all my symptoms it is lupus. She has ran more panels to see if she can tell exactly, it will take 10 days. In the meantime I'm stuck not knowing what to do. the bile d is worse & I don't know what to do. I called her office & she is on vacation. Called gi, it took him 4 days to get back with me. He prescribed colestra-something, to bind me but pharmacy can't get it till monday which is just my luck!

hippimom2
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Date Joined Jul 2005
Total Posts : 5403
   Posted 10/14/2006 6:50 AM (GMT -7)   
Hi bhkhhh. I usually post on the lupus forum, but saw your post here and wanted to respond. A lot of people with lupus have bowel and GI problems, so it is pretty common. Have you seen a rheumatologist yet? They are the specialists who treat lupus and can also help you with a diagnosis. It can be a very long and frustrating process to get a diagnosis and sometimes it takes years. It took me three years to get an accurate diagnosis and that is not nearly as long as some people have to wait.

Hang in there and don't give up trying to figure things out.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Amitriptyline 10mg; Neurontin 300mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain;

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

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jhmom
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Date Joined Oct 2004
Total Posts : 2244
   Posted 10/14/2006 8:37 AM (GMT -7)   
Hi, I am another one with Lupus and GI problems. How low was your titer and what was the pattern? You need to find a rheumatologist that specializies in Lupus. Hippimom is right, it takes some time to get a proper dx, it's like a puzzle that the doctor has to put together one piece at a time. There is no single test for Lupus, the doctor has to rule out other things first then go from there. There is also a criteria list (see link below) of symptoms they use to help in the dx process. Also, Hippimom has a great link in her signature, click on the Lupus informationt link, there is a lot of information there.

It took me several years to get a dx then another 1 1/2 years to find a rheumy that knew a lot about lupus and to find out that it attacks my GI tract. I hope you get some answers soon. Come visit us on the Lupus message board and feel free to ask questions.

http://lupus.org/education/diagnosis.html
 
Stacie, all I've done is make your link linkable.  Thanks for posting! -- Lil  :-)

Post Edited By Moderator (7Lil) : 10/14/2006 11:32:18 AM (GMT-6)


bhkhhh
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Date Joined Jul 2006
Total Posts : 245
   Posted 10/15/2006 3:22 PM (GMT -7)   
No my dermi is waiting on new labs to come back but she said she didn't care how they came back that they would eventualy all come back positive. I don't know what the tilter was but she said it was low but still positive. She has mentioned sending me to rheumatalogist & also kidney doc ( forgot the term ). I'm a little confused, If my panels are not any higher should she still send me? I am just so sick of being sick. Whatever it is it hit me like a ton of bricks & I just don't seem to be going back to normal.

jhmom
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Date Joined Oct 2004
Total Posts : 2244
   Posted 10/15/2006 3:54 PM (GMT -7)   
If your ANA is positive then your Dermy should send you on to a rheumy to check out check out things further. There are several other labs need to be done that can either confirm a lupus dx or rule it out. I hope you get some answers soon and start feeling better. Take care
Stacie
 
Trust in the Lord with all thine heart, and lean not unto thine own understanding
 
~ Proverbs 3:5 ~
 
DX with: Lupus, Hashimoto's & Celiac
 
Imuran, Plaquenil, Flexeril, Piroxicam, Levoxyl and Folic Acid


bhkhhh
Regular Member


Date Joined Jul 2006
Total Posts : 245
   Posted 10/15/2006 5:42 PM (GMT -7)   
Is lupus hereditary? My cousin had a real bad scare with this right before I became ill. He was hospitalized for the dx, he now takes prednizone & bp meds to protect his kidneys. I'm hoping that is all I will need. Does the bowel problem ever get any better? My cousins & I have the very same symptoms. I'm the one who requested the tests for this. In may I was negative , 2 mo ago positive & dermi thinks it will be higher this time. I'm real worried about the meds for this. I HATE TO TAKE MEDS!! I seem to have bad effects with meds. I have also seen some of the drugs are chemo drugs. Will they try prednizone first? The worst is the pain in my ribs ,sometimes I'm so bloated it hurts to sit I'm better off to stand. And the bowel problem!!!!

Keriamon
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Date Joined Jun 2005
Total Posts : 2976
   Posted 10/16/2006 9:49 AM (GMT -7)   
If I remember correctly, bhkhhh, lupus is an autoimmune disease and autoimmune diseases are genetic. For instance my mother has fibromyalgia and her sister has Crohn's (and their brother has nothing); they have/had two uncles with Crohn's as well. So you may have a cousin with lupus, but you may end up with rheumatoid arthritis or Crohn's or who-knows-what or nothing at all; they don't know why it manifests as one thing in one person and another thing in another person, but the fact that the body is attacking itself is the same.

You mention that you're having a lot of bile in your diarrhea. See a GI and ask for Welchol; that's what I take to absorb my excess bile and it works like a charm. My m-i-l is on it too and it's given her life back. That's the only thing it does, mind you: absorb bile. It doesn't prevent inflammation or pain or anything else; it just absorbs that excess bile and keeps you from having diarrhea. You can also try calcium; Linda (Inape) says that's all she uses to control her post-gall bladder-removal bile. It's not enough alone for me, but sometimes I use it in addition to the Welchol when I need just a little extra boost. And it did help my gut pain last summer (and early studies show it can help soothe irritated intestines--although I don't know what it would do for UC or Crohn's inflammation).

jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 10/16/2006 2:27 PM (GMT -7)   
Depending on how Lupus affects you (organs, joint pain, etc ) your doctor may or may not use the immune suppressant drugs (chemo) and / or Pred. My doctor told me long-term use of Pred was not an option for me as the side effects can be worse than the disease itself. She chose to put me on Imuran (immune suppressant drug) because Lupus attacks my GI tract, it has worked well for me. Another med used with Lupus is Plaquenil. It is normally used for the fatigue and joint pain and one of the first meds given as it has the fewest side effects. I don't like taking meds either and because of my GI problems I am very sensitive and normally have to start slowly on some meds (especially the Plaquenil) but if they help me function from day to day I will take them as long as I need to.

I hope you see a Rheumy soon and that you get some answers soon.
Stacie
 
Trust in the Lord with all thine heart, and lean not unto thine own understanding
 
~ Proverbs 3:5 ~
 
DX with: Lupus, Hashimoto's & Celiac
 
Imuran, Plaquenil, Flexeril, Piroxicam, Levoxyl and Folic Acid

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