Mesenteric Panniculitis or Sclerosing Mesenteritis

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 group.

@lisas444

Good to have you James (Reid). So much good info (350 members) and looks like you had a couple referrals already
Lisa

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Lisa, how do I join this support group? I was diagnosed with MP in February.

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@lauramolzen

I haven’t talked to my doctor yet but I have my post op appointment next Wednesday to go over everything. I just saw the diagnosis on the lab results and couldn’t find much information so was hoping someone could help me make sense of it. Thank you for reaching out I appreciate it.

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Hello @lauramolzen

You posted several months ago about a diagnosis of Mesenteric Panniculitis. I was just wondering how you are doing?

I hope you are feeling better. Will you post an update as you are able?

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Hi I was recently diagnosed with Mesenteric Panniculitis. I was in the ER with severe pain and they saw the "misty mesentery" on my CT scan. Just looking for some support and guidance. I see a GI specialist next week.

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@shandle

Hi I was recently diagnosed with Mesenteric Panniculitis. I was in the ER with severe pain and they saw the "misty mesentery" on my CT scan. Just looking for some support and guidance. I see a GI specialist next week.

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Hi @shandle – I was diagnosed with MP in February during an ER visit and have had 2 ER visits since then. I encourage you to go to Facebook where there are 2 support groups with great info, all taken with a grain of salt. The most important things to do now are to hydrate with at least 1 gallon of water a day, seriously reduce stress, get lots of sleep and watch your diet. I cut out sugar, dairy, spicy foods, fried foods, fatty meats. Mayo has 2 docs who specialize in the mesentery, so I suggest you try to see one. I have an appt 10/4 with a doc from Mayo in Rochester, MN. Sending positive thoughts to you!

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Hi Erin. I recently joined one group and have been reading thru the posts. I have been eating a GI soft diet since I got out of the hospital and taking Toradol and Zantac daily and my symptoms are not as severe. More mild discomfort and tenderness. I see a GI doctor in a few days.

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@lisas444

Hi JimmyMac –

We have 58 people in there now as Erin from this Mayo site joined up with us last week and I added her to it. We are on Facebook and a SM/MP medical group. It’s a closed/secret group so we can all talk and discuss freely about meds, pain, bowel issues, support, venting, laughter, etc. One of my daughter’s docs is in our group as well. My kiddo is currently back in patient on Saturday and still in unfortunately. My name is Lisa Schwart and I am on Facebook, in Tulsa, Oklahoma. If you give me your full name as well and City I can find you and add you as a friend. You aren’t able to “search” the SM group as we have it locked down specifically for everyone’s privacy. I’ve been putting together a database for each person with their doc names in each state etc as a resource for everyone as well! 🙂

Lisa

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Hi, I just want to enjoy the group and learn how deal with MP . Can you pls admit to the group? Thank you.

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I am only 34 years old and I was initially diagnosed with Sclerosing Mesenteritis in Oct 2020. I have been very very sick, and in pain ever since. I have seen 10+ specialists, including The Mayo Clinic in Rochester. In April of 2021 I had laprascopic surgery with a biopsy of my mesentery that confirmed the diagnosis of Sclerosing Mesenteritis. I am currently applying for disability and waiting an answer while I continue work up with Mayo and OHSU (here in portland, OR). If anyone has advice or help about disability insurance or anything else, i would greatly appreciate it. We have tried Azathioprine, Amatryptyline, Prednisone, Gabapentin, and more. We have not tried Tamoxifen because during one of my many hospital stays it was found that I had a stroke at one point in the last 5 months to 5 years (they dont know how old it is). My wife and I are at a loss of what to do next. We are discussing Functional Medicine. Currently the plan is to get me off Oxycodone for pain and try other non-narcotic medications as this may be exacerbating my symptoms. Any advice, espeicially with disability, would be greatly appreciated. Thank you all so much. I am so happy I found this site.

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