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

I was just diagnosed with Mesentery Panniculitis by CT Scan. I went to the ER in excrutiating pain in my lower back and around the hip into my abdomen. I had this happen two years ago as well. My primary care doc wants to send me to a rheumatologist. She also mentioned doing a needle biopsy to see if there is cancer. I live in Denver and wonder if anyone knows of a doctor (anywhere) who has experience with this disease.

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I also failed to mention that 2 years ago I was diagnosed with Antiphopholipid Antibody Syndrome and Essential Thrombocythemia, both considered rare diseases. I was put on Eliquis, baby aspirin, and a low grade oral chemo, Hydroxyurea.

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Hello all, I am a 30 yo with a new diagnosis of MP. I wasn't even told the results of my CT scan that had been done in the ER until I asked for a copy of the results and read the line for myself. It said mild induration around the superior mesentaric artery representing in mesenteric panniculitis. After reading that I asked one for the doctors I work with what that meant (because I work in the hospital as a Patient care tech) and he told me to follow up with GI (appt jan 28th). A little bit to my history, I was pretty healthy until about 3 years ago when I had my first attack of acute pancreatitis. It was a shock to me because I didnt fit the mold for someone who gets pancreatitis at 27. I ended up having it 5 more times after in the span of about 5 months. Each time being hospitalized for a week of NPO and iv fluids and pain meds. It was terrible. I had a sphincterotomy in March last year 2019 and I keep getting the same pains. I have seen many doctors and have been told "it's in my head!" I have given up hope until the recent findings on the CT. It was found incidentally because I thought it was a kidney stone. I also what told I have steatosis and fibrosis of the liver. I had my gallbladder removed after the first episode of pancreatitis. I have dealt with so much abd pain, nausea, vomiting, bloating, constipation, and diarrhea and excessive gas. I dont do much but work because as soon as I go the pain starts. I came across this thread and have been reading your posts for about 2 hours now and feeling a little less alone with each post. I'm sorry for such a long rant but it's been building for quite sometime now. Not such where to go from here….

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@ashley112689

Hello all, I am a 30 yo with a new diagnosis of MP. I wasn't even told the results of my CT scan that had been done in the ER until I asked for a copy of the results and read the line for myself. It said mild induration around the superior mesentaric artery representing in mesenteric panniculitis. After reading that I asked one for the doctors I work with what that meant (because I work in the hospital as a Patient care tech) and he told me to follow up with GI (appt jan 28th). A little bit to my history, I was pretty healthy until about 3 years ago when I had my first attack of acute pancreatitis. It was a shock to me because I didnt fit the mold for someone who gets pancreatitis at 27. I ended up having it 5 more times after in the span of about 5 months. Each time being hospitalized for a week of NPO and iv fluids and pain meds. It was terrible. I had a sphincterotomy in March last year 2019 and I keep getting the same pains. I have seen many doctors and have been told "it's in my head!" I have given up hope until the recent findings on the CT. It was found incidentally because I thought it was a kidney stone. I also what told I have steatosis and fibrosis of the liver. I had my gallbladder removed after the first episode of pancreatitis. I have dealt with so much abd pain, nausea, vomiting, bloating, constipation, and diarrhea and excessive gas. I dont do much but work because as soon as I go the pain starts. I came across this thread and have been reading your posts for about 2 hours now and feeling a little less alone with each post. I'm sorry for such a long rant but it's been building for quite sometime now. Not such where to go from here….

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Hi @ashley112689, It sounds like you should have an ERCP with a Manometry Test to check your biliary ductal system pressures. Especially, if you have undergone a previous sphincterotomy (where your sphincter of Oddi was snipped in half to allow bile to move more freely). I have a history of having 2 separate sphincterotomies (about 1 year apart from each other) & then had a sphincteroplasty to remove the entire sphincter (about 3 years later). Since that time, I have been placed on Protonix (a Proton Pump Inhibitor), which helps with keep excees bile from building up in my digestive system. Best wishes on finding/fixing the problem!❤

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Hi,
My name is Michele Thomas.
Was diagnosed with mesenteric panniculits by the Trauma Center radiologist in Columbia, SC where we had a car accident in May of 2019.
Have a massive hematoma from the seat belt tightening or embedding in my abdomen from one side to the other. The panniculitis is located on
the left side where the seat belt fastened into the center of the front seat–the air bags did not go off–so I took all of the force of the crash where
the seat belt was fastened across me. I was very fortunate to have gone to Mayo Clinic in Rochester for an endothelial cornea transplant which saved
the sight in my left eye in 2015. So I went on the Mayo site and found Dr. Pardi et al's research article from 2007 on mesenteric panniculitis. Called the GI Department and the doctors asked me to sent the records from the Trauma Center which I did and they called the next day to schedule an appointmemt for August. Dr. Glen Alexander and Dr. Zheng, his resident, saw me and ordered another CT Scan which I did. In evaluating the CT scans, the
mesenteric panniculitis had not changed in any way. Since I'm allergic to steroids, they concurred that since I was asymptomatic it was okay to take nothing.
Have never had outright pain with it, but rubbing it gently you can tell its not quite right. They said that 16 to 25% of individuals with this diagnosis
go on to have non-Hodgkins Lymphoma, so if I end up with night sweats, fever, loss of weight or other "b" systems to head back ASAP. If not we
plan to reconnect in a year from my last visit to see if there are any changes. They were wonderful–I highly recommend them. Dr. Alexander showed me the
CT scan pointing to the different important things present in my abdomen–some diverticulitis, a good liver with one focal area of fat, a healthy spleen. Felt very comfortable with him and asked him a number of questions and pointed to things I did not understand on the screen. He very gently answered my questions slowly so I could take it in. I could tell that he was very experienced and he told me he had seen many of the cases in the original study done in 2007. So grateful to God that I was able to see him.
Before I went to Mayo, I saw a local dietician here and am on a FODMAP diet which includes gluten free and also careful of acidic foods for GERD. Subscribed to Diabetic Living Magazine and Simply Gluten Free and More–they both have great recipes. My local GI has run differential blood tests to watch my white cell count and hopes that I will go to a hemotologist/oncologist because he was taught that this disorder is not best covered by GI practitioners, but is rather a disease of the blood–he did his training and residency at UK and this is first year in practice. He is very encouraging and listens which has been very helpful as he had originally suggested the FODMAP diet when I saw him after the accident in May. This week he looked me in the eyes and said, "You have a rare disease–1 in one million people have it." So I decided to do a little research today to connect with others who have this disorder so I won't feel so alone and maybe I can help others by sharing and learn what others have done that has worked for them.

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Two years ago I had an abdominal blood clot and was diagnosed with Antiphospholipid Antibody Syndrome, a rare disease. I was also diagnosed with Essential Thrombocythemia, another rare low grade blood cancer. I was put on baby aspirin, Eliquis, and Hydroxyurea for the blood cancer. Two months ago I was diagnosed with Mesentery Panniculitis, another rare disease by CT Scan. My internist and onlologist consulted with the radiologist who diagnosed the MP and they all agreed that since the Mesentery had not changed in a year that I did not have MP. They also now say I do not have Anitphopholipid Antibody Syndrome which supposedly does not go away. I am starting to lose faith in the tests and doctors. Anybody else have similar experiences?

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@michelet

Hi,
My name is Michele Thomas.
Was diagnosed with mesenteric panniculits by the Trauma Center radiologist in Columbia, SC where we had a car accident in May of 2019.
Have a massive hematoma from the seat belt tightening or embedding in my abdomen from one side to the other. The panniculitis is located on
the left side where the seat belt fastened into the center of the front seat–the air bags did not go off–so I took all of the force of the crash where
the seat belt was fastened across me. I was very fortunate to have gone to Mayo Clinic in Rochester for an endothelial cornea transplant which saved
the sight in my left eye in 2015. So I went on the Mayo site and found Dr. Pardi et al's research article from 2007 on mesenteric panniculitis. Called the GI Department and the doctors asked me to sent the records from the Trauma Center which I did and they called the next day to schedule an appointmemt for August. Dr. Glen Alexander and Dr. Zheng, his resident, saw me and ordered another CT Scan which I did. In evaluating the CT scans, the
mesenteric panniculitis had not changed in any way. Since I'm allergic to steroids, they concurred that since I was asymptomatic it was okay to take nothing.
Have never had outright pain with it, but rubbing it gently you can tell its not quite right. They said that 16 to 25% of individuals with this diagnosis
go on to have non-Hodgkins Lymphoma, so if I end up with night sweats, fever, loss of weight or other "b" systems to head back ASAP. If not we
plan to reconnect in a year from my last visit to see if there are any changes. They were wonderful–I highly recommend them. Dr. Alexander showed me the
CT scan pointing to the different important things present in my abdomen–some diverticulitis, a good liver with one focal area of fat, a healthy spleen. Felt very comfortable with him and asked him a number of questions and pointed to things I did not understand on the screen. He very gently answered my questions slowly so I could take it in. I could tell that he was very experienced and he told me he had seen many of the cases in the original study done in 2007. So grateful to God that I was able to see him.
Before I went to Mayo, I saw a local dietician here and am on a FODMAP diet which includes gluten free and also careful of acidic foods for GERD. Subscribed to Diabetic Living Magazine and Simply Gluten Free and More–they both have great recipes. My local GI has run differential blood tests to watch my white cell count and hopes that I will go to a hemotologist/oncologist because he was taught that this disorder is not best covered by GI practitioners, but is rather a disease of the blood–he did his training and residency at UK and this is first year in practice. He is very encouraging and listens which has been very helpful as he had originally suggested the FODMAP diet when I saw him after the accident in May. This week he looked me in the eyes and said, "You have a rare disease–1 in one million people have it." So I decided to do a little research today to connect with others who have this disorder so I won't feel so alone and maybe I can help others by sharing and learn what others have done that has worked for them.

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Hi @michelet and welcome to Connect. Thank you for sharing your story! Your outlook on your diagnosis is inspiring. I'm sure fellow Connect members like @kimber361,@patowen1 @ashley112689, and @kimh would like to connect with you as you get to know the community.

Back to you @michelet, how has your diet been helping?

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@patowen1

Two years ago I had an abdominal blood clot and was diagnosed with Antiphospholipid Antibody Syndrome, a rare disease. I was also diagnosed with Essential Thrombocythemia, another rare low grade blood cancer. I was put on baby aspirin, Eliquis, and Hydroxyurea for the blood cancer. Two months ago I was diagnosed with Mesentery Panniculitis, another rare disease by CT Scan. My internist and onlologist consulted with the radiologist who diagnosed the MP and they all agreed that since the Mesentery had not changed in a year that I did not have MP. They also now say I do not have Anitphopholipid Antibody Syndrome which supposedly does not go away. I am starting to lose faith in the tests and doctors. Anybody else have similar experiences?

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Hi @patowen1,

I'm tagging other members who have talked about Antiphospholipid syndrome in other discussions; I hope they will be able to share their experiences and insights with you. Please meet @georgiagirlrelocated, @skymya, @soitis4590, @taogirl2, @colettehellerud, @lagata, @lisaa, @lena999 @zebraclaire97 @irenekw @bruges. You can also read their experiences and insights in these discussions:

– Antiphospholipid syndrome/Hughes https://connect.mayoclinic.org/discussion/antiphospholipid-syndrome-hughes/
– Antiphospholipid and Lyme disease https://connect.mayoclinic.org/discussion/antiphospholipid-and-lyme-disease/

According to this article by Mayo Clinic http://mayocl.in/1YaYc5X “People with certain infections, including syphilis, HIV infection, hepatitis C and Lyme disease, among others, have a higher incidence of having antiphospholipid antibodies.”

@patowen1, what symptoms of antiphospholipid syndrome do you have and how are you managing them?

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