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Thread: Gastrointestinal motility & Lupus

  1. #1
    Join Date
    May 2014
    Thanked 1 Time in 1 Post

    Default Gastrointestinal motility & Lupus

    Hi. I'm new to this site, but not new to Lupus. I was initially diagnosed with RA 2 1/2 years ago and that diagnosis was changed last summer to SLE after I continued to develop new symptoms. Plaquenil, methotrexate, and amitriptyline manage most of my skin, pain and fatigue symptoms fairly well. I still have to be careful not to get overtired or overheated. I currently have no kidney or heart involvement. I have Raynaud's but no ulcers. I do have some neurological issues, but they are not too troublesome at this time.

    My most distressing and miserable manifestation of this disease is the generalized gastrointestinal dysmotility. I have severe GERD, on and off swallowing difficulties, mild gastroparesis, and a non-functioning colon. I've been hospitalized a few times for idiopathic ileus and one instance of megacolon. Multiple scans over the past 2 years consistently show backed up stool even when I was taking laxatives. I've been seeing a gastroenterologist for over a year and have not been able to get this under control. The meds either don't work or I have to take such high doses that they make me brutally sick.

    I finally made an appointment to see a surgeon today - the same doctor who removed my gallbladder (which also stopped working) and treated me for the ileus/megacolon last year. He refused to take my case....on two counts. The first being that I have Lupus and the second that the dysmotility is not limited to my colon, but is affecting my entire GI tract although the upper GI symptoms are much more manageable at this time. He said this something that will only get worse over time, not better. He also said that saying that lupus caused this isn't enough because there are several ways that can happen - neurological, vascular, fibrosis, etc. and that I need more testing to pinpoint the exact hows and whys. So, he referred me to a neurogastroenterologist and surgeon at a university hospital in the city.

    Does anyone have any experience with this? Vasculitis or nerve damage of the GI tract? What are the treatment options, medical and/or surgical?

    Thanks in advance for any info or insight anyone can provide me.

  2. #2
    Join Date
    Mar 2011
    pinjarra, western australia
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    Thanked 1,844 Times in 1,279 Posts


    hi snowbear,
    sorry i cannot offer advise, but i did want to welcome you.
    When you're stressed, You eat Ice cream, Cake, Chocolate & Sweets. Why? Because stressed spelled backwards is DESSERTS.

  3. #3
    Join Date
    Dec 2009
    Atlanta Area - Dacula
    Blog Entries
    Thanked 437 Times in 351 Posts


    Any luck with the new doctor? When will you see him? Wish I had some advice, but can't quite say I have the same problem. Sending Hugs and Good thoughts your way

  4. #4
    Join Date
    Nov 2001
    Victorville, California
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    Thanked 1,128 Times in 743 Posts


    Intestinal nerve damage affects the functioning abilities of the intestine. Food moves slowly or stops moving through the digestive tract. One such disorder is gastroparesis, or delayed gastric emptying. In this case, the stomach takes a long time to empty its contents because the vagus nerve is damaged. This causes the muscles of the intestine and stomach not to work normally. Nerve damage can be caused by a viral infection, diabetes, and eating disorders. In regards to Lupus, because the disease can affect the nervous system, then nerve damage to the GI can also occur.

    I've not had any experience with this disorder and so I can't offer you much help. Please let us know what you and your doctors decide, what treatments you agree on and if you are finding relief. I wish you the best.

    Peace and Blessings

    Look For The Good and Praise It!

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