In need of suggestions/awareness/support

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windy city
Veteran Member

Date Joined Dec 2010
Total Posts : 607
   Posted 4/22/2013 11:34 AM (GMT -6)   
Good day,

This is my first post here on Lupus. I've only been a member of the Ostomy forum.

I'm in need of suggestions. I have been putting this off for some time now. I'm ready to move forward. And I think, that if this board is anything like the Ostomy board, you would be so helpful and encouraging.

I'll make this as brief as possible. History: I'm 40 year old female. Since childhood I always had abdominal pains, slow bowels. At 28 my esophagus started spasming, leading to vomiting due to choking. At 32, diagnosed with ATypical diverticulosis. Had hundreds of diverticula in all colonic parts. Had an esophageal manometry and found dysphagia in the lower esophagus. Colon flare free for 3 years, but then had 5 more diverticulitis infections until surgery. Had total colectomy with ileo rectal connection. Disconnected/leakage days later which lead to sepsis and emergency ileostomy. Also a blood clot by my liver. Had other post op complications. Discharged after 6 weeks. This was almost 3 years ago.

I have been fine since, thankfully. I have always known that there is something underlying, doctors never take me seriously. My surgeon said in 30 years, he never saw such a destroyed colon ravished with diverticula. He believes I had some tissue disorder, pathology didn't state anything. Could it also be the reason that the surgerical connection disconnected? My rectal or small intestional tissue could also be affected? Basically, I could have connective tissue disease that destroyed parts of my GI tract? Hematologist states the thrombosis (blood clot) was probably due to the sepsis. I believe autoimmune.

I was supposed to reverse my ostomy a long time ago. I don't know if I should. I am fine, hope the worst is behind me. But every case is different, and auto immune diseases are questionable in every fashion. Do I warrant further observations and I see a Rheumatologist? I need to know, but what do they do to investigate? How do they determine, is it just a clinical observation? I very well could have Lupus or possibly scleroderma. I live in the Chicagoland area and a referral would be great too!

Thank you very much for reading!

Veteran Member

Date Joined Apr 2006
Total Posts : 1344
   Posted 4/22/2013 4:00 PM (GMT -6)   
Lupus and scleroderma ( I have both) are not always easy to diagnose but eventually antibodies show up and there are general inflammation makers like sed rate that show up, often first.  There is a specific lupus panel that is run and doctors also will look for the antibodies associated with scleroderma.
Northwestern, Rush, and U of Chicago all have strong departments of rheumatology if you decide to pursue your idea.  But if you are not having some of the clinical symptoms of those diseases you probably don't have them.  If you had an AI disease strong enough to destroy your colon I would think you would have a collection of symptoms and various lab results would have had results to investigate further.
MCTD (SLE Lupus, polymyositis, scleroderma). Diagnosed 2005. Kidney, liver, GI tract, dysphagia, raynauds, barretts esophagus, quadriplegic in 2005. Recovered and now active in downhill skiing, golf, hiking. Meds: amlodipine, benezapril, omeprazole, potassium, folic acid, vitamins, maxide.

Remain Optimistic and you can overcome.
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