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

@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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@winnah

Hello, I was diagnosed with mesenteric panniculitis just a few days ago at the ER. I am looking for forums or groups with others that have the same diagnosis and information to share. I had a follow up today with my primary doctor and I am pretty sure he Googled it right before he walked into the room because he said exactly the same words I read when I googled it a couple of days ago. He didn’t seem too concerned and said to take Tylenol for pain and we would do a follow up CT scan in 3 months. I finally convinced him to refer me to a gastro doctor at OHSU. But that will take a few weeks. I am not even sure how they can know it is MP without any further testing or biopsy? Any suggestions of where I can find out more info would be wonderful!

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Hello, I live in the DC/Baltimore area. I was just diagnosed with MP. My GI doctor is trying to find another doctor for me to go to for a 2nd opinion. What is the name and phone number of the doctor you found that was familiar with MP? Thank you.

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@winnah

Hello, I was diagnosed with mesenteric panniculitis just a few days ago at the ER. I am looking for forums or groups with others that have the same diagnosis and information to share. I had a follow up today with my primary doctor and I am pretty sure he Googled it right before he walked into the room because he said exactly the same words I read when I googled it a couple of days ago. He didn’t seem too concerned and said to take Tylenol for pain and we would do a follow up CT scan in 3 months. I finally convinced him to refer me to a gastro doctor at OHSU. But that will take a few weeks. I am not even sure how they can know it is MP without any further testing or biopsy? Any suggestions of where I can find out more info would be wonderful!

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I like the docs at Capital Digestive in DC; but no real experts in DC or up at Johns Hopkins. The real authority in the US is Dr. Darrell S. Pardi, MD up at the Mayo Clinic in Rochester, MN; but, that’s a journey. Good luck!

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@winnah

Hello, I was diagnosed with mesenteric panniculitis just a few days ago at the ER. I am looking for forums or groups with others that have the same diagnosis and information to share. I had a follow up today with my primary doctor and I am pretty sure he Googled it right before he walked into the room because he said exactly the same words I read when I googled it a couple of days ago. He didn’t seem too concerned and said to take Tylenol for pain and we would do a follow up CT scan in 3 months. I finally convinced him to refer me to a gastro doctor at OHSU. But that will take a few weeks. I am not even sure how they can know it is MP without any further testing or biopsy? Any suggestions of where I can find out more info would be wonderful!

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Thanks.  I do see one of the doctors at Capital Digestive.  He is at the Olney, MD office.  He is trying to find another doctor in the area that might know more about MP. I was recently diagnosed and just had some blood work done to see what my inflammation markers are. He mentioned prednisone and some other medicine but wanted to wait.  I have a followup CT scan in January to see if there are any changes to the small abdominal mass I have (it was benign).  I have been reading about the FODMAP diet and find that some of the foods I tend to avoid are the ones on the do not eat list.I don't think I want to go to MN but will if I have to.

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@winnah

Hello, I was diagnosed with mesenteric panniculitis just a few days ago at the ER. I am looking for forums or groups with others that have the same diagnosis and information to share. I had a follow up today with my primary doctor and I am pretty sure he Googled it right before he walked into the room because he said exactly the same words I read when I googled it a couple of days ago. He didn’t seem too concerned and said to take Tylenol for pain and we would do a follow up CT scan in 3 months. I finally convinced him to refer me to a gastro doctor at OHSU. But that will take a few weeks. I am not even sure how they can know it is MP without any further testing or biopsy? Any suggestions of where I can find out more info would be wonderful!

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Welcome to Connect, @adelecj57. I’m so sorry about your diagnosis, but you’ve come to the right place to find support and information.

I see that @billindc has addressed your question, (thank you billindc!), and I wanted to follow up, and introduce you to the many Connect members who live with mesenteric panniculitis. Please meet @billymac65, @mommasaid, @vdouglas, @doron, @ngilson, @bertbiz, @mardellepoff, @txbear and @miker46.
Some, like you, were diagnosed recently, and other members have been managing the condition for quite some time. You may also read the discussion here: http://mayocl.in/2eZsrdG.

@adelecj57, has the FODMAP diet helped you? If so, could you tell us a little more about your experience with the diet?

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@winnah

Hello, I was diagnosed with mesenteric panniculitis just a few days ago at the ER. I am looking for forums or groups with others that have the same diagnosis and information to share. I had a follow up today with my primary doctor and I am pretty sure he Googled it right before he walked into the room because he said exactly the same words I read when I googled it a couple of days ago. He didn’t seem too concerned and said to take Tylenol for pain and we would do a follow up CT scan in 3 months. I finally convinced him to refer me to a gastro doctor at OHSU. But that will take a few weeks. I am not even sure how they can know it is MP without any further testing or biopsy? Any suggestions of where I can find out more info would be wonderful!

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We contacted Dr. Pardi, who, through a few contacts, put us in touch with Dr. Raymond Cross at University of Maryland Medical Center. He is GI doc with a primary focus on inflammatory bowel disease and has one other patient with MP. He may be a place to start.

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@winnah

Hello, I was diagnosed with mesenteric panniculitis just a few days ago at the ER. I am looking for forums or groups with others that have the same diagnosis and information to share. I had a follow up today with my primary doctor and I am pretty sure he Googled it right before he walked into the room because he said exactly the same words I read when I googled it a couple of days ago. He didn’t seem too concerned and said to take Tylenol for pain and we would do a follow up CT scan in 3 months. I finally convinced him to refer me to a gastro doctor at OHSU. But that will take a few weeks. I am not even sure how they can know it is MP without any further testing or biopsy? Any suggestions of where I can find out more info would be wonderful!

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Thank you. I will check him out .
Adele

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@winnah

Hello, I was diagnosed with mesenteric panniculitis just a few days ago at the ER. I am looking for forums or groups with others that have the same diagnosis and information to share. I had a follow up today with my primary doctor and I am pretty sure he Googled it right before he walked into the room because he said exactly the same words I read when I googled it a couple of days ago. He didn’t seem too concerned and said to take Tylenol for pain and we would do a follow up CT scan in 3 months. I finally convinced him to refer me to a gastro doctor at OHSU. But that will take a few weeks. I am not even sure how they can know it is MP without any further testing or biopsy? Any suggestions of where I can find out more info would be wonderful!

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I have only just looked into the FODMAP diet so I haven't had a chance to start yet. Just did a little shopping today for some items. I will let you know once I give it a good try.
Adele

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@angel11

I was also just diagnosed with Mensenteric Panniculitis. I am 38, female with a history of abdominal pain and issues. Mine was also found accidently on a catscan with Iv Contrast. My doctor was also looking for an Inguinal Hernia that was found during a lapro procedure 4 years ago. I am very fatigued, wake up with hot red face, blood in stool, nausea, most of all, abdominal pain. My doctor started me on 40 mg of steroids and I am to see a GI specialist in a few days. Nothing ever showed in my bloodwork prior to the catscan. As this is such a rare condition, I am very concerned about underlying diseases. How do you even know what stage your in? What other conditions will they check for? Is this an auto immune disease?

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I was recently diagnosed with MP. I was told that I have probably had this condition forbyears. I do not have much pain but I am certainly fatigued and nauseous. I have my first appointment with a gastroenterologist next week.

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@angel11

I was also just diagnosed with Mensenteric Panniculitis. I am 38, female with a history of abdominal pain and issues. Mine was also found accidently on a catscan with Iv Contrast. My doctor was also looking for an Inguinal Hernia that was found during a lapro procedure 4 years ago. I am very fatigued, wake up with hot red face, blood in stool, nausea, most of all, abdominal pain. My doctor started me on 40 mg of steroids and I am to see a GI specialist in a few days. Nothing ever showed in my bloodwork prior to the catscan. As this is such a rare condition, I am very concerned about underlying diseases. How do you even know what stage your in? What other conditions will they check for? Is this an auto immune disease?

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Hello @viva,

Welcome to Connect. I’m very sorry to hear about your diagnosis; however, here you will find so many other members who share your pain and can offer support.

I would like to bring in @bertbiz, @mardellepoff, @miker46, @billymac65, @mommasaid, @vdouglas, @doron, @ngilson, @billindc, and @adeleccj57, in the hope that they will share their experiences with you.

Viva, we would love to get to know you better; what are you doing to manage the fatigue and nausea? Has your doctor put you on any medications that may be causing these symptoms?

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