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.