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Mesenteric Panniculitis and Sclerosing Mesenteritis: Let's connect

Posted by BillyMac65 @billymac65, Dec 6, 2012

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

Interested in more discussions like this? Go to the Digestive Health Support Group.

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aksandralynn | @aksandralynn | 3 days ago

Good morning. I am glad to hear you are making progress! I hope to say that soon!
Yes, being on pain meds is not going to be an option for very long. It's not how I want to live. I am doing as much research and trying everything to get this under control. With the absence of sjogrens and lymphoma per lab work, I feel I might need to go on a round of steroids to get things back to 'normal'. I'm not sure. Did they try that with you? And I don't want to be on steroids long term either. The only abdominal surgery I have had was my gall bladder out about 20 years ago. Not sure if that has been a contributing factor, and I do tend to carry a lot of stress in my life (work, kids, etc...). I've read stress complicates it all. I have retired (yay!) and I mediate everyday and walk. Just added a bit of exercise with light weights every other day (when I am not in pain).
Thank you for the link to Mayo. I meet with my new GI doctor tomorrow (because I am having issues currently, they pushed up my appointment). I am going to talk with her about Mayo and see what she thinks. I really like her. My first meeting with her, she talked with my for an hour and a half! I thought that was amazing. Now that she has all my records I hope she will have a plan to move forward with controlling this. I get this feeling it might be something I will live with or I also read it can just go away on its own...who knows!!! Please stay in touch. It's nice to talk with someone who is in the same boat and understands. :-). Take care!!

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Janell, Volunteer Mentor | @jlharsh | 1 day ago
In reply to @aksandralynn "Good morning. I am glad to hear you are making progress! I hope to say that..." + (show)
Profile picture for aksandralynn @aksandralynn

Good morning. I am glad to hear you are making progress! I hope to say that soon!
Yes, being on pain meds is not going to be an option for very long. It's not how I want to live. I am doing as much research and trying everything to get this under control. With the absence of sjogrens and lymphoma per lab work, I feel I might need to go on a round of steroids to get things back to 'normal'. I'm not sure. Did they try that with you? And I don't want to be on steroids long term either. The only abdominal surgery I have had was my gall bladder out about 20 years ago. Not sure if that has been a contributing factor, and I do tend to carry a lot of stress in my life (work, kids, etc...). I've read stress complicates it all. I have retired (yay!) and I mediate everyday and walk. Just added a bit of exercise with light weights every other day (when I am not in pain).
Thank you for the link to Mayo. I meet with my new GI doctor tomorrow (because I am having issues currently, they pushed up my appointment). I am going to talk with her about Mayo and see what she thinks. I really like her. My first meeting with her, she talked with my for an hour and a half! I thought that was amazing. Now that she has all my records I hope she will have a plan to move forward with controlling this. I get this feeling it might be something I will live with or I also read it can just go away on its own...who knows!!! Please stay in touch. It's nice to talk with someone who is in the same boat and understands. :-). Take care!!

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Great news that your GI appointment was moved up, and encouraging to hear you started exercising, @aksandralynn.

Excellent question about steroids, you may be on to something! They help with so much and they are a last resort for me. Methylprednisolone is on my allergy list after a medication challenge confirmed an adverse reaction.

Let’s do stay in touch.

What progress did you make with your new GI doc today?

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peterose | @peterose | 33 minutes ago
In reply to @peterose "Mesenteric panniculitis is a rare inflammatory condition affecting the fatty tissue of the mesentery in the..." + (show)
Profile picture for peterose @peterose

Mesenteric panniculitis is a rare inflammatory condition affecting the fatty tissue of the mesentery in the abdomen. While its exact cause remains unclear, several potential contributing factors have been identified:

🧬 Possible Causes of Mesenteric Panniculitis
Idiopathic Inflammation

In many cases, the inflammation appears spontaneously without a known trigger.

Autoimmune Disorders

The immune system may mistakenly attack mesenteric tissue, leading to chronic inflammation.

Abdominal Surgery or Trauma

Prior surgeries or injuries to the abdomen have been linked to the development of this condition.

Infections

Chronic infections such as tuberculosis, typhoid fever, cholera, syphilis, and Whipple’s disease have been associated with mesenteric panniculitis.

Cancer Associations

Some studies suggest a link between mesenteric panniculitis and cancers like kidney or prostate cancer. About 28% of patients with the condition had a history of these cancers.

Medications and Vascular Issues

Certain medications and vascular problems may also contribute, though evidence is limited.

🧠 Disease Progression
Mesenteric panniculitis can evolve through stages:

Mesenteric Lipodystrophy – Fat tissue is replaced by immune cells.

Mesenteric Panniculitis – Intense inflammation occurs.

Retractile Mesenteritis – Scar tissue forms, potentially causing complications.

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@peterose ....... Hi most over 60's have it and although it shows up on ct scans ..doctors etc tend to ignore it until patient has intestine issues etc....when the presence of mesenteric panniculitis. adds to the challenges!

Watch what you eat /exercise ect.....try anything to reduce inflammation!

.ONE QUESTION ........ARE YOU CONSTIPATED?

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