1. < Digestive Health

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 Support Group.

erincorn | @erincorn | Jun 14, 2021
In reply to @amandaa "Hi @erincorn, and welcome to Mayo Clinic Connect. Glad you found a group about Mesenteric Panniculitis..." + (show)
@amandaa

Hi @erincorn, and welcome to Mayo Clinic Connect. Glad you found a group about Mesenteric Panniculitis or Sclerosing Mesenteritis.

It looks as though the main physicians that specialize in MP are primarily in Rochester MN, but I would encourage you to call their main number and ask for their Central Appointment Office to see if they have specialists on staff.
https://www.mayoclinic.org/patient-visitor-guide/arizona/campus-buildings-maps/mayo-clinic-hospital
These are the physicians in Rochester:
https://www.mayoclinic.org/diseases-conditions/sclerosing-mesenteritis/doctors-departments/ddc-20355089
When you were diagnosed in February, was this the first time you had the horrible pain, nausea and vomiting?

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Good morning and thank you. Yes, February was my first serious bout. I had small tinges of cramps and pain previously, but thought they were nothing. I called the AZ Mayo in Scottsdale and they do not have an MP specialist, but will try the number above and will also check Rochester because I am happy to travel to see a specialist. I appreciate your support!

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1 reply
erincorn | @erincorn | Jun 14, 2021
In reply to @erincorn "Good morning and thank you. Yes, February was my first serious bout. I had small tinges..." + (show)
@erincorn

Good morning and thank you. Yes, February was my first serious bout. I had small tinges of cramps and pain previously, but thought they were nothing. I called the AZ Mayo in Scottsdale and they do not have an MP specialist, but will try the number above and will also check Rochester because I am happy to travel to see a specialist. I appreciate your support!

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I see the AZ link is the Mayo location I called this morning.

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floridamike | @floridamike | Jun 16, 2021
In reply to @floridamike "Thanx for the link. I requested an appointment a couple of days ago and now just..." + (show)
@floridamike

Thanx for the link. I requested an appointment a couple of days ago and now just waiting to hear back from them.

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UPDATE: I tried to get an appointment at Mayo in Florida but they're full. Does anyone know of an MP specialist in the Tampa Bay area?

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russelflippo | @russelflippo | Aug 7, 2021
In reply to @lisas444 "Good to have you James (Reid). So much good info (350 members) and looks like you..." + (show)
@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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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Sep 4, 2021
In reply to @lauramolzen "I haven’t talked to my doctor yet but I have my post op appointment next Wednesday..." + (show)
@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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shandle | @shandle | Sep 16, 2021

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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1 reply
erincorn | @erincorn | Sep 18, 2021
In reply to @shandle "Hi I was recently diagnosed with Mesenteric Panniculitis. I was in the ER with severe pain..." + (show)
@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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shandle | @shandle | Sep 18, 2021

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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felipe53 | @felipe53 | Oct 23, 2021
In reply to @lisas444 "Hi JimmyMac - We have 58 people in there now as Erin from this Mayo site..." + (show)
@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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candaceoc | @candaceoc | Nov 11, 2021
In reply to @tarad "I feel like I'm slowly going crazy... I had a hysterectomy May 9, 2017. By August,..." + (show)
@tarad

I feel like I'm slowly going crazy... I had a hysterectomy May 9, 2017. By August, I was diagnosed with mesenteric panniculitis that was "accidentally discovered" when I continued having abdominal pain after surgery (my gyno naturally thought it was my ovaries; CT scans done and radiologist found the MP). I was sent to a surgical oncologist that was said to be a "GI guru" and have extensive knowledge in all things "weird and rare". He was rather dismissive about it all as, based on my lab work my gyno had done, there was nothing that made him think there was a concern for cancer. Just brushed it off as an "annoyance issue", that the pain could stay for a month or a year, but he would give me Mobic to help with the inflammation and it should eventually resolve itself (standard treatment for MP is through steroids, but I have anaphylactic reactions to all steroids, and I'm kinda trying to NOT die....). I'm a month in on the Mobic, the flare ups in pain are more frequent with the pain being more and more intense. Nausea has also started to set up and my appetite is waning, at best, as most of the time, the thought of food makes me sick. My PCP and gyno weren't pleased with the consult I had from oncol. One has ordered a repeat CT to be done in a couple of months to monitor progression/improvement. The other has referred me to gastro and hematology. I had a positive ANA and a positive double strand DNA. My spleen has been consistently mildly enlarged on the past few CT's I've had done. Research material on this is limited. I feel like I'm in a snowglobe, being shaken up with all these doctors, throwing around words like "necrosis" and "restricted blood flow" and "cancer" and referral after referral. I'm frustrated and tired of "hurry up and wait".... is there ANYONE that's ever dealt with this that can give me a little insight on it all???

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I was diagnosed with celiac disease around 20 years ago (I am 71), and have been maintaining a strict GF diet. Several months ago, I was also diagnosed with jejunal mesenteric panniculitis, but my internist doesn't know much of anything about it. How concerned should I be? Should I see a specialist? Does panniculitis (which I'd never previously heard of) advance to something more serious? Thank you.

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