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Mesenteric Panniculitis and Sclerosing Mesenteritis: Let's connect
I thought I would start a discussion for patients with Mesenteric Panniculitis. From what I know, this auto-immune disorder has three stages to it, each with differing names (Mesenteric Panniculitis, Schlerosing Mesenteritis, Retractile Mesenteritis). Typically, this appears to be in older individuals with some other under-lying problem (Lymphoma, tumor, diverticulitis).
I have an atypical presentation because I do not have an underlying cause. The doctors seem to be hoping for Lymphoma to appear so they can treat it and have the auto-immune go away. I am interested in hearing from others with this. I had this diagnosed in 2011, so I am interested in hearing more about what this is like to live with. I want to hear from others who also have an atypical presentation. Did is come back? Also interested in hearing from those with Lymphoma. How was the treatment? Did it address the auto-immune?
Pretty much, I am interested in hearing from anyone who has had this, so i can better understand it, and not feel so alone with this!!
Bill
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HugInterested in more discussions like this? Go to the Digestive Health Support Group.
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Adding to my own post /above......Is there an actual connection to Colorectal cancer?....from reading it does seems that many with Mesenteric Panniculitis also have or get cancer? like I have / NOW HOPEFULLY GONE /NO CHEMO REQUIRED! ........Why so little information out there?
I feel your pain I have had this condition now for 14 months and can’t find any relief. They put me on prednisone for 4 months which alleviated my symptoms and I thought it was gone despite the medical problems the prednisone caused but within a week or two of finally coming off the taper all the symptoms came back. Please help.
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1 ReactionWelcome to Mayo Clinic Connect, @sdrussett1. I moved your post here so you could chat with others talking talking about mesenteric panniculitis, such as @peterose @tahbsoweight @tprinter and others. Hoping they can provide some support and ideas for you.
How discouraging to go through a course of prednisone and think your symptoms are alleviated, only to have them return.
I have also been on courses of prednisone for 5-day periods for asthma flare. It does take care of my flares, but of course, for a totally different condition. I only sleep about 4 hours per night while on it, however, and my husband thinks it erases my filter for my words, which I'm sure is correct.
What kind of medical problems did you encounter from the prednisone? What is your doctor suggesting you do next, sdrussett1?
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1 ReactionPrior to recent surgery to remove a tumor in my small intestine /grade 3a /no chemo...My specialist reviewing my medical history noted a history of Mesenteric Panniculitis noted in ct scans etc ... .the open surgery was not planned until into the surgery due to extensive inflammation from Mesenteric Panniculitis
My family doctor had not ever discussed Mesenteric Panniculitis with me and still refuses to!
Three months after surgery i still have stomach discomfort similar to what i have has for 10 years! ......cannot confirm if discomfort relates to surgery or Mesenteric Panniculitis?...or both?
why is the medical world ignoring us?
Man, you just scared me with the 10 years thing, I remember when I was first diagnosed I was 2 weeks in and the dr said maybe 3 to 6 weeks and I am now at 14 months. I experienced the same thing after my first Cat Scan in the ER, the dr said I had some inflammation in my intestines and I will be fine and sent me home. I was in terrible pain and called my gastroenterologist and that’s when I learned that it was rare and they didn’t have a true treatment plan. I feel like they don’t understand how your quality of life is diminished when you walk around all day like someone keeps punching you in the gut.
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1 ReactionSTANDARD RESPONSE the dr said I had some inflammation in my intestines and I will be fine and sent me home.
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1 ReactionIn older people it shows up in 90% of ct scans but never addressed.........then surgery re an issue comes along and every thing surrounding a tumor is unclear until the specialist opens you up!.........prior to my surgery it would effect me for say a month at a time then go away / i actually learned to live with it....adding to the confusion i pass a kidney stone every couple of years and that's what all my ct scans were looking for and anything else showing....
is not discussed!
I have been on colchicine for years. Prescribed for Behcets ulcers. I am having neuropathy in feet & legs. Could this be a side effect? In reading some articles maybe?
SAME SITUATION!....now i have both mesenteric panniculitis and diverticulitus!
no resolution to either...........chronic pain since 2016 colon tumor removed this year open surgery because adhesions and scar tissue due to untreated mesenteric panniculitis and diverticulitus!
I was diagnosed with mesenteric panniculitis in June of this year 2025. I also have fatty liver disease, I don’t have diabetes which I find it strange usually it comes with this disease. I wonder if liver disease connects with this mesenteric panniculitis in anyway. My doctor prescribed me some Corticosteroids to help with the symptoms however I just got a resent CT scan with contrast and it revealed it’s gotten worse. I’m waiting on my doctors recommendation on what to do next.