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

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Chaya
Regular Member


Date Joined Mar 2007
Total Posts : 194
   Posted 4/14/2008 12:37 PM (GMT -6)   
I just received in the mail today correspondence from the new Johns Hopkins Dr. I am curious to see if anyone here has any idea of her possible thought process.
 
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.

TiBoBi
Regular Member


Date Joined Mar 2008
Total Posts : 89
   Posted 4/14/2008 2:41 PM (GMT -6)   

I'm not sure what she is leaning towards either, but if you feel she is expecting to find something.. then ask her what her hunch is. I have picked up on that from my doctor more than once and just asked him flat out.. he has been pretty up-front with me and it has put my wandering mind at ease. Ask your doc. Maybe your GI doc is missing something.

 

Ti


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 4/14/2008 2:51 PM (GMT -6)   
Lupus causes inflammation. I had a GI doctor tell me inflammation in the digestive tract can cause a bunch of non-specific symptoms that mimic IBS/IBD but that when caused by inflammation from diseases like lupus it is not true IBS/IBD.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sj√∂gren's, damaged periphrial nerves 2007, pregnant due May 2008
Tx: plaquenil, Enbrel, Darvocet, Singulair, Flexeril, Baby Asprin, Imuran, Procardia, Prilosec


Chaya
Regular Member


Date Joined Mar 2007
Total Posts : 194
   Posted 4/14/2008 3:13 PM (GMT -6)   
Ti,
 
 
      I have tried asking her questions by email twice to no avail. She answers the most of direct questions but if the question is going to require alot of work and time its just not responded to. To her credit she is swamped with patients and holds a huge title with a large patient load. It is irritating as hell though not to be able to understand fully the nature of ones disease. I am going to write out all of my questions and next time I see her maybe by being more direct in my approach I will get my questions answered. My first appt I think I was floored in her agreement that I have Lupus. I watch HW women struggle with numerous Dr.'s who either wont Dx them or diagree with anothers Dx. I have not had that happen . The one Dr. who was such an a@@ last summer saw my labs and called me with a Lupus Dx over the phone ( he had seen me previously when ordering the labs ). I have had 3 different Rhuemys now Dx me with Lupus. I think I was shocked. I wasnt able to formulate all of my questions . I still wonder if I have something different lol. Denial? a little bit but I have been Dx with 5 auto immune diseases in one summer and none of them are even remotely related!!!!! For instance the women on this board all have similiar disease paths such as Sjogrens, Lupus, UCTD , they are all familial if you will. Mine are a hodge podge of non sense.
 
 
Thank you much for replying I appreciate it

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1218
   Posted 4/14/2008 5:22 PM (GMT -6)   
Chaya,
 
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. 
 
 
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
Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena, Hypertension, Barrett's esophagus.
 
Meds: prednisone 5mg, 50mg imuran, Lotrel 40/5mg, maxide 37.5/25mg, folic acid, potassium, aciphex 20mg, multi vitamins.
 
Maintain your optimism and you can beat the odds.
 
"Although the world is full of suffering, it is also full of the overcoming of it."  Helen Keller
 
 


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 4/14/2008 5:26 PM (GMT -6)   
Lupus can affect the intestines in several different ways. Here is good website.

yourtotalhealth.ivillage.com/can-lupus-affect-intestines.html

For me I was first dx with Celiac but continued to lose weight and have diarrhea, when I got to my 3rd rheumy she suspected it was from lupus right away. The other 2 kept putting me off on my GI doc. She put me on Imuran and I could immediately tell a difference . The way she explained it to me was the problem could either be on the inside or the outside of the intestines, it's hard to tell but the improvement on Imuran tells her we are on the right track. She has also told me she only has a few patients like me.

What sort of GI symptoms are you having? Have any of the doctors attempted to treat your symptoms? I am sure I am forgetting something so feel free to ask any specific questions that you may have. Take care
Stacie

Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Hashimoto's, Celiac Disease, Raynaud's, Lupus and Sjogrens
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Lortab (as needed) and magic mouthwash (for mouth sores)


Chaya
Regular Member


Date Joined Mar 2007
Total Posts : 194
   Posted 4/14/2008 6:54 PM (GMT -6)   
Bill thank you so very much for the kind words and the Pdf file. I am going to check it out now.  I am sorry you have suffered the extent you have. I am not thinking I have such severe disease.
 
 
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!

AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 4/15/2008 1:02 AM (GMT 0)   
(((((( Chaya )))))) . . . Sorry you are having such problems with your GI tract. It can really be painful.

I just got results (today) from a recent c-scope and recurrent issues with mega pain in the bowel along with the need to be very near a bathroom. GI doc is shocked at the "tons of diverticuloses" she found and the additional dx of Chrons (she pretty sure because of biopsies and inflammation along with the area of pain). I'm just trying to get my head around it too.

You must be so frustrated whilst still waiting for a definitive dx. Meanwhile . . . one question I would have is what is the treatment plan for your current condition (whatever they might call it). I rarely push for a dx . . . but I do push for a treatment plan. This time, I got both.


Bill and Stacey . . . thanks SO much for the web sites. Just on time for my inquiring mind.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


Chaya
Regular Member


Date Joined Mar 2007
Total Posts : 194
   Posted 4/14/2008 8:20 PM (GMT -6)   
Well....I have a hard solid Dx of Lupus and my current GI feels confident in my CD Dx and the Urologist feels confident of my IC Dx. Its the new Lupus Dr questioning everyone elses Dx. I am irritated as hell as to why everyone cant play happy and just agree!! 
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.

haji0410
New Member


Date Joined Jan 2007
Total Posts : 17
   Posted 4/20/2008 7:57 PM (GMT -6)   

I have developed GERD, hyatal hernia and gastritis to go along with my lupus related kidney disease. The development of the stomach problems have been occuring since November 2007. I've been losing a lot of weight (5'8" male 35 yrs old and weigh 119 lbs....was 150 lbs Jan 2007)

I've been suspecting that the stomach issues have caused my body to not be able to absorb my meds properly. My GI specialist just gives me protonox which helps with the GERD but he doesnt really know what's causing the inflammation of the stomach. My primary care doctor suspects its all related to the lupus but he's not much more helpful than that.

I wish I could gain weight since my appetite is still healthy but I can't.

I'm currently being evaluated for a transplant for my kidneys....I wonder if the stomach issues aren't affecting my body's ability to absorb the cellcept properly that should be helping my kidneys.

 

 

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