What can cause these problems of the GI tract in Lupus patients

She states in her letter that she received pathology results showing cecum with active chronic colitis without displasia or granuloma. The specimen from the IC valve shows focal active crytitis without granuloma. The colonic mucosa reveals mild crypt distortion , depletion of goblet cells, acute crytitis. There is diffuse inflammatory infiltrae consisting of lymphocytes, plasma cells, macrophages, and eosinophils in the lamina propria. Again no dysplasia no granulomas.

She states she discussed this with her GI fellow and was told that the pathology is not diagnostic of CD but suggests IBD. She would want to confirm via small bowel series ( which I had done an showed nothing ) . They feel the pathology suggests IBD but not clearly CD.

My Gi Dr ( not from the Lupus center ) clearly defined I do not meet any of the criteria of UC. What would the Lupus Dr. be looking for if not IBD? When I told her I had a Dx of IBD she was not content to believe me and requested proof of biopsy. Even with that proof she seems to have a hunch of her own. I looked up Lupus in the gut and it is represented by vascular disease of which none was seen in the pathology report. What am I missing? What else can go wrong in the gut as related to Lupus? Anyone here sick of trying to be their own physician? I am clearly growing weary. I have painful urination yet again and more WBC and RBC  and proteinuria that comes and goes at will. The BUN and CBC came back normal. That would show kidney disease is there were any. I also do not have high blood pressure which is an indicator of kidney disease.

The subject is a very complicated one and there are many GI problems associated with SLE.  I personally had dysphagia and still have Barretts esophagus and something resembling IBS although I don't have that in the opinion of my doctors.  When I was near death one of the reasons my case was so drug resistant was that my intestines were not absorbing meds or food properly and my meds were switched to IV.  I also have diverticulosis but there is no agreement if that was caused by my illness or something else.

Here is a long article on the subject and will give you some idea of the complexity and also the lack of total understanding of the subject.  It requires downloading a 16 page pdf file that you can read and/or save to your computer. 

http://rheumatology.oxfordjournals.org/cgi/reprint/38/10/917

My impression of my own problems is that nothing in my GI tract is functioning like it were 3 years ago.  I believe, as do my doctors, that the disease hit my entire GI tract in one way or another.

Also, you talk about "familial" diseases....they are all related in the sense that they are auto immune.  Studies have shown that auto immune diseases tend to run in families however not necessarily the same ones.  Most of us have other relatives who have some sort of auto immune diseases but not the one(s) we have.  And most of us have several....lupus, scleroderma, and polymyositis in my case as well as other secondary conditions caused by the primary disease(s).  All of this shows the systemic nature of auto immune diseases and how a misdirected immune system can produce so many different diseases and symptoms.  Lupus has been called the disease with a 1000 faces and it often mimics other diseases which makes diagnosis so difficult in some patients.  In my case, I actually have mixed connective tissue disease which is much rarer than lupus and usually exhibits symptoms of at least 3 diseases.  Normal definition is sle, scleroderma and polymyositis but some also have RA, dermatomyositis, sjogrens, and others.  Very confusing.  Like lupus every patient is different so there is no standard set of symptoms, treatment, or outcome.  Frustrating and scary but that is the nature of these horrible diseases.

It sounds like you are still in search of a diagnosis but there are many possibilities from lupus alone or you could have another AI disease.  AI diseases are not like a viral or bacterial disease where there is a known agent that causes a certain set of symptoms.  With AI diseases there is a set of genes that predispose our immune systems to a disruption and then something else acts as a trigger.  In most cases we never know what that trigger is.  It isthought that some of us might have an early trigger bringing our immune system to the brink but not showing any outward symptoms.  Then another trigger pushes it over the brink and causes an attack on some part of our body.  The whole mechanism is not understand but it is very complex and until researchers understand which genes, and what the cellular mechanisms and chemistry are that cause a specific set of symptoms there is a lot of guessing.   

I had kidney involvement and had low normal BP but had a condition called proteinuria which caused very extreme edema in my case.  Fortunately, there was little damage and meds (lisinopril and lasix) helped to put things in order again.  A year later my BP shot up due to prednisone and I am still fighting that with meds.

Sorry you are having so much difficulty getting a diagnosis but after several years of this I have forgotten what it is like to be normal.  My disease was diagnosed fairly early but it has taken a year and half to diagnose all the secondary conditions and diseases that have resulted.  No fun.

Keep pushing your doctors for answers and explanations.  We are all trying to understand something that is not yet understood and is extremely complex.  The study of our genes in relation to AI diseases has just begun and there has been some progress in understanding the mechanisms of some diseases.  Lupus is fairly widespread and there is a lot of research going on.  My muscle disease, polymyositis, forget it.  Too rare and almost unknown.  I will probably be long gone by the time they understand and find a specific treatment and cure.  Right now AI diseases are treated by "tranquilizing" our immune systems with corticosteroids or immuno suppresants....not by treating the disease itself. 

I know none of this is comforting but we are all in the same frustrating boat to some degree.  Hang in there and keep pushing for answers.

Bill

Stacie I had lower right quadrant pain and severe constipation for months. Dr.'s told me fat people dont have IBD ( I was about 60 lbs overweight ) and low and behold I dropped 75 lbs faster than you could bat an eyelash. They finally listened and decided to take a look. They put me on Entecort, colozal and of course the steriods from hell and ever since I have never been off the steriods due to some kind of inflammatory response. I have Asthma, am diabetic ( marginally, depends on where I am with steriod doses and weight ) , CD, Lupus , Raynauds and Interstitial cystitis. 

The GI feels sure its CD as my ASCA  was 54 and along with the pathology she feels its a slam dunk ( my son has severe CD also ). I just dont understand why the Rhuemy feels the need to question every single thing. Hell ! they Dx me with Lupus with only ANA, RO and La , photosensitivity, malar rash and arthritis. I give up!!!!! I hate that I dont feel secure in my treatment. I think I am aggravated because I am in pain. The pelvic pain and painful urination are making me insane. I feel like I have fire ants inside my urethra . Life is grand!

The current medications are Colozal, Prednisone, Singular, Plaquinil, Cyclosporine, Metphormin when indicated, Albuterol, Prevacid, living on Pyridium these days and I cant think of anymore at the moment . I showed the biopsy results in my original post and I did not show the extent of damage you had.

As I said before.....Its funny to me that the Lupus Dx sticks like glue and the Cd is refutable when that disease has pathology! I am clearly not as sick as so many on HW and for that I am greatful. I just wish things like urinating would become simple like it used to be.