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.

aksandralynn | @aksandralynn | Jun 25 10:31am

In reply to @smartinez2016 "@lph714 since this is rare there’s not much known. I believe there’s many more with MP...." + (show)

@smartinez2016 I was put on Wegovy and after two weeks of taking it (two shots), it caused a horrible flare. I won't take any GLP-1's at this point.

newyjules54 | @newyjules54 | Jun 27 5:11pm

I was recently diagnosed with sclerosing mesenteritis and am just thankful to find this group

Lisa Lucier, Moderator | @lisalucier | Jun 28 11:44am

In reply to @newyjules54 "I was recently diagnosed with sclerosing mesenteritis and am just thankful to find this group" + (show)

@newyjules54 - welcome to Mayo Clinic Connect. Thankful you found this group, as well.

Wondering when you were diagnosed? What symptoms led to your seeking medical help?

newyjules54 | @newyjules54 | Jun 28 6:41pm

In reply to @lisalucier "@newyjules54 - welcome to Mayo Clinic Connect. Thankful you found this group, as well. Wondering when..." + (show)

@lisalucier
I was only diagnosed about 3 weeks ago, after months of exhaustion, bladder and bowel problems, nausea, abdomen distension, weight loss, but nothing showing up in bloodwork so eventually sent for ct scan … thankfully prednisone is making a difference 🤔😎🌻

uncledad123 | @uncledad123 | Jun 28 7:00pm

In reply to @newyjules54 "@lisalucier I was only diagnosed about 3 weeks ago, after months of exhaustion, bladder and bowel..." + (show)

@newyjules54 so glad prednisone is making difference. It unfortunately made no impact on mine. Let’s us know how things go?

donna4778 | @donna4778 | 1 day ago

I have messenteric panniculitis with IBS-C. I'm having a very difficult time making a normal bowel movement. I take Linzess 290 mg, 2 stool softeners and miralax every day. My bowel movement is hard balls. Ended up in emergency room recently due to "poop" backed up in my colon. Is anyone experiencing this same thing. I need help. Dr has me on a very restricted diet and instructions to use liquid magnesium citrate if I don't go in 72 hrs.

burrpenick | @burrpenick | 1 day ago

In reply to @donna4778 "I have messenteric panniculitis with IBS-C. I'm having a very difficult time making a normal bowel..." + (show)

sorry, but Im in a similar but opposite reason: Dumping syndrome/diarrhea evidently a later in life case caused by Gastric bypass for bleeding ulcer in 1980. For close to 3 yrs no answer from Docs. Orig doc said I had Colitis (microscopic) so put me on prednisone and budesonide plus a RESTRICTIVE DIET- and neither worked too well. Immodium AD helps, but still have issues w/weight loss. Last doc had me try a new script- Dicyclomine- and it has not worked as well as the Immodium. Going back soon and he called in a new script for something else.