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

@mitsy2020

My husband as been recently diagnosed with mesenteric panniculitis- after more test than I can name Mayo figured it out- he’s started meds but really haven’t said how long he’ll have to take them? His main symptom is severe bloating which is now affecting his breathing, Does anyone else have these issues?

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Mitsy – I have these issues as well as my main symptoms, I was diagnosed in May and confirmed with a follow up scan in November (also have had Hashimotos since childhood so this is my second autoimmune disease), now my primary doc had bounced me back to my GI, who has no openings for appointments for two months, very frustrating. What has your husband tried for relief??? I would also like to know which tests he had at Mayo since I am seriously considering going there, also which meds since I am very apprehensive about taking a steroid, thanks!

Anne

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Hi, I have been recently diagnosed with sclerosing mesenteritis and searching online for more information. I am grateful to have found this space. I am a 47 year old male. I experienced unexplained higher white blood cell count since 2016 but was never high enough to cause concern by my Doctors. Starting in July 2020 I had discomfort on my upper left abdomen that came and went and my Doc blamed it on the work from home order due to COVID and told me to stretch and exercise more. In November, pain increased and I went to the ER. CT showed sclerosing mesenteritis and very high white blood cell count. Was put on very high doses of antibiotics which did nothing. Found a GI who gave me another CT this week, this time with barium, with same results. Now waiting for GI Doc for next steps. I am trying to manage the pain and lethargy. I see there are many posts here, will keep reading and hope to learn diet tips or any hopeful leads on Doctors that can help. Thank you for reading. Jim

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@jimbodc

Hi, I have been recently diagnosed with sclerosing mesenteritis and searching online for more information. I am grateful to have found this space. I am a 47 year old male. I experienced unexplained higher white blood cell count since 2016 but was never high enough to cause concern by my Doctors. Starting in July 2020 I had discomfort on my upper left abdomen that came and went and my Doc blamed it on the work from home order due to COVID and told me to stretch and exercise more. In November, pain increased and I went to the ER. CT showed sclerosing mesenteritis and very high white blood cell count. Was put on very high doses of antibiotics which did nothing. Found a GI who gave me another CT this week, this time with barium, with same results. Now waiting for GI Doc for next steps. I am trying to manage the pain and lethargy. I see there are many posts here, will keep reading and hope to learn diet tips or any hopeful leads on Doctors that can help. Thank you for reading. Jim

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Jim, is the mass exactly where your pain is? If yes it will be important to treat it correctly and find the right doctor. If not, it may not be related. I also have a very high WBC count. As a result they checked me for every kind of cancer under the sun. Turns out I have Eosinophil Asthma. It was misdiagnosed as having chronic bronchitis for nearly a year because of covid. It is the most severe form of asthma. My vitamin D and magnesium levels were depleted but no one noticed. What I am saying is that your WBC count may be pointing to other inflammation in your body. Or it may be the mesentery itself.

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@constancelee

Jim, is the mass exactly where your pain is? If yes it will be important to treat it correctly and find the right doctor. If not, it may not be related. I also have a very high WBC count. As a result they checked me for every kind of cancer under the sun. Turns out I have Eosinophil Asthma. It was misdiagnosed as having chronic bronchitis for nearly a year because of covid. It is the most severe form of asthma. My vitamin D and magnesium levels were depleted but no one noticed. What I am saying is that your WBC count may be pointing to other inflammation in your body. Or it may be the mesentery itself.

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Thank you. I am sorry to hear of your diagnosis. I did see a Hematologist in September on my own due to the WBC being high for so long and cancer runs in my family. They found no sign of cancer which was good news but my B12 and D levels were depleted so I started supplements. The CT reports did not mention a mass only many inflamed lymph nodes in the mesentery and a lot of inflammation on left side where all the pain is. Could the inflammation cloud other issues? GI Doc mentioned biopsy which I am nervous about the qualifications of the surgeon. When I meet him this week will be sure it is someone with experience in MP/SM.

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I went in for a biopsy. I wanted to make sure that the little mass was not cancerous. It was supposed to be a minimal laparoscopic procedure. I was advised that if there were complications it could be a complete open. I should have asked for a definition of complications. They opened me up completely, got a biopsy and closed me up. Now I’m waiting to have an incisional hernia repaired at Mayo.

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@constancelee

I went in for a biopsy. I wanted to make sure that the little mass was not cancerous. It was supposed to be a minimal laparoscopic procedure. I was advised that if there were complications it could be a complete open. I should have asked for a definition of complications. They opened me up completely, got a biopsy and closed me up. Now I’m waiting to have an incisional hernia repaired at Mayo.

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You may even want to consider a visit to a rheumatologist, to try to track down the inflammation. I finally tracked mine down to my sinuses. I have an appoint with an ENT in a few weeks.

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@beckymel

Mitsy – I have these issues as well as my main symptoms, I was diagnosed in May and confirmed with a follow up scan in November (also have had Hashimotos since childhood so this is my second autoimmune disease), now my primary doc had bounced me back to my GI, who has no openings for appointments for two months, very frustrating. What has your husband tried for relief??? I would also like to know which tests he had at Mayo since I am seriously considering going there, also which meds since I am very apprehensive about taking a steroid, thanks!

Anne

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He had Multiple CT scans, Pet scans Upper GI, XRays etc ( Dr’s here were even advising exploratory surgery but didn’t ) all done here but no one here could figure out what it was- Saw a pulmonologist & gastroenterologist at Mayo- blood test , breathing test, x-rays, & another CT – diagnosed within 2 days- he’s been on prednisone prior & didn’t help- gastroenterologist put him on colchicine- it’s starting to work & after only a week we’re seeing the start of the bloating going down & he’s breathing a little better even though it’s a slight improvement we’re hopeful!

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I have recently been diagnosed from a CAT scan with mesentric panniculitis. Pain every morning between 3-5 am in right side until ,I have a bowel movement then goes away until the next morning. What is the bloating you refer to that is going down…I see my gastroenologist january 21….

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@jimbodc I am not sure where you are located but there are 3 Mayo Clinics.. Jacksonville, FL, Rochester, MN, Scottsdale, AZ… also look at Cleveland Clinic for excellent GI Care.. Boston General and Johns Hopkins are not as well known to me.. but they have great reputations..

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@nancykeenan

I have recently been diagnosed from a CAT scan with mesentric panniculitis. Pain every morning between 3-5 am in right side until ,I have a bowel movement then goes away until the next morning. What is the bloating you refer to that is going down…I see my gastroenologist january 21….

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My husband never really experienced pain, his started with bloating in his upper abdomen for over a year & the bloating gradually got worse which the pressure started effecting his breathing!! Good luck , Mayo was the only Drs that could figure out what was wrong!!! THEY ARE WONDERFUL

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@mitsy2020

My husband never really experienced pain, his started with bloating in his upper abdomen for over a year & the bloating gradually got worse which the pressure started effecting his breathing!! Good luck , Mayo was the only Drs that could figure out what was wrong!!! THEY ARE WONDERFUL

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Thank you…my pain is probably better described as discomfort. I am from near Toronto, ontario, so a long way from the Mayo Clinic….I will see what we know up here and go from there….do you think diet has anything to do with it?

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@nancykeenan

Thank you…my pain is probably better described as discomfort. I am from near Toronto, ontario, so a long way from the Mayo Clinic….I will see what we know up here and go from there….do you think diet has anything to do with it?

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Morning Nancy! I am from Fort McMurray. We have a few of us in Canada. Many of us do watch our diets carefully. Some with “formal “ diets others not do much. Through elimination I have discovered I cannot eat onions or corn in any form, no seafood, alcohol, extreme spices and have found small meals and less red meat seems to work best. But none of us are exactly the same. Biggest influences -seems to affect most is -less stress and more rest. Stay well and think positive❤️

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And here comes another Canadian lol….I'm from Ontario….staying away from stress is a must for me as well as lots of rest! Another factor for me is weather, specifically cold, damp weather. As for diet, as with @pcfromfm, spicy food is problematic and smaller snacks work better for me than large meals. I hope this helps1

Liked by PCfromFM

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@pcfromfm

Morning Nancy! I am from Fort McMurray. We have a few of us in Canada. Many of us do watch our diets carefully. Some with “formal “ diets others not do much. Through elimination I have discovered I cannot eat onions or corn in any form, no seafood, alcohol, extreme spices and have found small meals and less red meat seems to work best. But none of us are exactly the same. Biggest influences -seems to affect most is -less stress and more rest. Stay well and think positive❤️

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Thanks to you and kimh! I have not really found anything yet but justnstarted writing it down. Not enough sleep may be something. I am a terrible sleeper, so will keep my eye on that too. I don’t eat spicy food, so no problem there! Thanks fir your help! Stay safe..

Liked by PCfromFM, kimh

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