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.

This is a message from me to anyone who has posted on the Mayo Clinic discussion site in regards to either Mesenteric Panniculitis or Sclerosing Mesenteritis. There is a very active support group on Facebook under the name of “Sclerosing Mesenteritis” with approximately 277 members, give or take. The site shows a picture of blue ocean water with some rocky coastline on each side. You can look up the group on Facebook to try to join the group. The group is very supportive and helpful. Some of the members have been to the Mayo Clinic. Our members are from various states across the USA as well some from Canada, Australia, the UK and a few other countries. My name is Vivian and I am member of this group as I have this disease. You cam PM me if you want more info but I am not in control of adding people to the group. Good luck to all of you with this disease! Take care. Vivian

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@msvivian

This is a message from me to anyone who has posted on the Mayo Clinic discussion site in regards to either Mesenteric Panniculitis or Sclerosing Mesenteritis. There is a very active support group on Facebook under the name of “Sclerosing Mesenteritis” with approximately 277 members, give or take. The site shows a picture of blue ocean water with some rocky coastline on each side. You can look up the group on Facebook to try to join the group. The group is very supportive and helpful. Some of the members have been to the Mayo Clinic. Our members are from various states across the USA as well some from Canada, Australia, the UK and a few other countries. My name is Vivian and I am member of this group as I have this disease. You cam PM me if you want more info but I am not in control of adding people to the group. Good luck to all of you with this disease! Take care. Vivian

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Hi Vivian, There is great synergy between forums like Mayo Clinic Connect and facebook. I appreciate your making Connect members aware of yet another option to meet people. You’ll note that I’ve edited your email to instead direct members to private message you. To keep members safe, we recommend sharing personal contact information by private message which is secure from unwanted spam and trolls.

Vivian – how are doing? How have you been managing with the symptoms of MP and/or flare-ups?

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I’m an African American female and I was diagnosed with MP March 2015. Absolutely no one understands the pain or fatigue I feel every single day and I don’t want to feel like I’m complaining when I say I’m hurting or tired everyday but I am.

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I was diagnosed with MP May of this year. I understand you pain and fatigue. You are not complaining, you are stating how you feel. What kind of treatment have you gotten?

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@dria

I’m an African American female and I was diagnosed with MP March 2015. Absolutely no one understands the pain or fatigue I feel every single day and I don’t want to feel like I’m complaining when I say I’m hurting or tired everyday but I am.

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Hi @dria, and welcome to Connect; so sorry to hear about what you are going through.

bertbiz is right: you are not complaining, just stating how you feel. You have come to the right place, because here you will find many other members who share your pain and can offer support.

I would also like to bring in @mardellepoff, @miker46@billymac65, @mommasaid, @vdouglas, @doron, @ngilson, @billindc, @gmeg; I hope they will share their experiences with you.

dria, could you tell us a little more about yourself? Have you found a doctor experienced in treating MP? Are you undergoing any specific treatment?

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@dria

I’m an African American female and I was diagnosed with MP March 2015. Absolutely no one understands the pain or fatigue I feel every single day and I don’t want to feel like I’m complaining when I say I’m hurting or tired everyday but I am.

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Sorry you are part of this group. This is a great place to find support as everyone is fighting the same battle. My husband has MP, was diagnosed in May of this year. Since then, we have had his PCP say it was a “controversial” diagnosis, and his GI not really believing it. The PCP even told ME to do the research and let him know what I find. I started contacting doctors and found one doctor in Baltimore who would treat him (had one other patient), but then our insurance changed and this doctor is no longer in network. Currently fighting to get him seen for continuing care (found an case manager to help). Unfortunately, with this disease you need to be your own advocate and researcher. Best of luck. We are hear for you if you have any questions.

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My husband was just diagnosed with this in the ER this morning. We have to call the surgeon to make an appointment for him to see my husband. They told us a clear liquid diet or a bland diet in the ER for now. Sent him home on pain meds and nausea meds. Just trying to figure out what kind of food he can eat that wont flare him up. I am a nurse and just looked up his diagnosis. Some a little more informed but a little more nervous now that I know more about it.

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@jenarndts68

My husband was just diagnosed with this in the ER this morning. We have to call the surgeon to make an appointment for him to see my husband. They told us a clear liquid diet or a bland diet in the ER for now. Sent him home on pain meds and nausea meds. Just trying to figure out what kind of food he can eat that wont flare him up. I am a nurse and just looked up his diagnosis. Some a little more informed but a little more nervous now that I know more about it.

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When I was first diagnosed, I was already eating bland foods. I was having a lot of chicken broth, as well. I was told white rice, things made with white flour like pancakes, white bread. Smaller amounts of food several times a day instead of big meals help. After taking Prednisone and the flare-up calmed down, I was given a copy of the FODMAP diet. It was suggested to integrate small amounts of vegetables at a time, one kind at a time and monitor which veggies worked and which ones didn’t. Right now the more bland and liquid diet makes sense to give your husband’s intestine a chance to rest and calm down. I hope this helps.

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@jenarndts68

My husband was just diagnosed with this in the ER this morning. We have to call the surgeon to make an appointment for him to see my husband. They told us a clear liquid diet or a bland diet in the ER for now. Sent him home on pain meds and nausea meds. Just trying to figure out what kind of food he can eat that wont flare him up. I am a nurse and just looked up his diagnosis. Some a little more informed but a little more nervous now that I know more about it.

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Thank you so much for your reply. I really appreciate the information. I am just getting into finding information etc. we will find out more once we see the surgeon this week.

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Keep in mind that surgery isn’t always necessary. It depends how far along the MP is. Mine was managed with prednisone. I took the prednisone for about 2 1/2 months and I’ve been off of it for almost 3 months. I’m eating pretty normally. I am careful with vegetables and don’t eat onions or corn anymore.

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