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.

LS4 / Lisa Schwart Tulsa Oklahoma (FB page) | @lisas444 | May 10, 2017
In reply to @croller68 "Hi, I have been fighting this severe abdominal pain that tends to stay near my belly..." + (show)
@croller68

Hi, I have been fighting this severe abdominal pain that tends to stay near my belly button and then likes to radiate left. Some days its manageable and some days I am literally doubled up waiting to die. I recently got a job at a hospital with awesome benefits so I starting talking to every doctor I could find as I support them all. Various pain management drugs were tried with little effect so I found a GI who scoped me from both ends and found nothing. Then they ordered a CT and wham there it was. I was diagnosed with mesenteric panniculitis but finding what is best to kill the pain is a battle still raging. They started me on 40mg of prednisone which works great but is causing other issues such as fast heart rate and elevated blood pressure not to mention makes me moody as hell. 10 years ago I was diagnosed with prostate cancer at age 38. I already have high blood pressure and I am also a prostate cancer survivor. My doctor is not all that versed on this condition and both the GI docs here at the hospital seem also not to know much about it. My doctor has tried other things but nothing works like the prednisone. I just can't handle the side effects. I wish I could find someone locally who has a good understanding of this disease and could help me find a way to cut out the pain. I was quite overweight and have been on a diet to the point that I have dropped 30 pounds but the pain some days continues to be unbearable. Starting to get frustrated.

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Hi croller. Some good info here. We also have a private group with 350 members all across the USA and several other countries with SM and MP. My daughter was diagnosed with severe aggressive SM following a misdiagnosed ruptured several day old appy and 3 back to back abd surgeries, sepsis, and a month inpatient when this all started. SM diagnosed after all that and life changed and has almost taken her life a few times now. She was diagnosed when was 14 and is now 23. We have a wonderful group would love to add you to and network you with others near you and support. Work with every member adding in in networking doc and hospital info within your state and or country for doc who will see and treat SM/mp . Sent you a private msg as well. Hope to hear back from you.

REPLY
Doron | @doron | May 10, 2017
In reply to @croller68 "Hi, I have been fighting this severe abdominal pain that tends to stay near my belly..." + (show)
@croller68

Hi, I have been fighting this severe abdominal pain that tends to stay near my belly button and then likes to radiate left. Some days its manageable and some days I am literally doubled up waiting to die. I recently got a job at a hospital with awesome benefits so I starting talking to every doctor I could find as I support them all. Various pain management drugs were tried with little effect so I found a GI who scoped me from both ends and found nothing. Then they ordered a CT and wham there it was. I was diagnosed with mesenteric panniculitis but finding what is best to kill the pain is a battle still raging. They started me on 40mg of prednisone which works great but is causing other issues such as fast heart rate and elevated blood pressure not to mention makes me moody as hell. 10 years ago I was diagnosed with prostate cancer at age 38. I already have high blood pressure and I am also a prostate cancer survivor. My doctor is not all that versed on this condition and both the GI docs here at the hospital seem also not to know much about it. My doctor has tried other things but nothing works like the prednisone. I just can't handle the side effects. I wish I could find someone locally who has a good understanding of this disease and could help me find a way to cut out the pain. I was quite overweight and have been on a diet to the point that I have dropped 30 pounds but the pain some days continues to be unbearable. Starting to get frustrated.

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Hi there,

For some people (but definitely not all), they can control symptoms with diet. For me diet has been my savior. I have never taken any steroids or any other meds although I have seen a Messenteric specialist. I do go through periods of pain that are bad and it is only when I cheat. I think I am fortunate to have an autoimmune version of this. I have done two things to place my symptoms in remission:

1. I am on the Paleo autoimmune protocol
2. I take the following gut supplements as recommended by Kris Kresser (here is the link: http://my.chriskresser.com/the-supplement-guide/). I take the list for digestive disorders and the list for autoimmune.

Bullet 2 has changed my life, allowed me to cheat on my diet and basically removed my bloating. Some people go on FODMAP diet, but the Paleo autoimmune protocol works for me. I know that many folks don't have an autoimmune version, but I imagine that these supplements and probiotics would help with general health. I used to have Gerd (acid reflux for 11 years, taking 300mg of zantac daily) and now I don't take a single pill.

Good luck!

REPLY
LS4 / Lisa Schwart Tulsa Oklahoma (FB page) | @lisas444 | May 11, 2017
In reply to @warlick "I have just been diagnose with SM I am trying to feel my way through this..." + (show)
@warlick

I have just been diagnose with SM I am trying to feel my way through this to choose Florida or Minnesota. I no nothing about either so any help will be greatly appreciated. Reid

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Thx, shared that info with the group.

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LS4 / Lisa Schwart Tulsa Oklahoma (FB page) | @lisas444 | May 11, 2017
In reply to @deets "Hi All, I was just told I have MP after having severe abdominal and fever with..." + (show)
@deets

Hi All, I was just told I have MP after having severe abdominal and fever with nausea and vomiting. I had a Ct which showed a hazy mesentery and mildly prominent nodes. Glad I found this group. Going to see GI MD in 2 weeks.

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Sent you a pm

REPLY
Kanaaz Pereira, Connect Moderator | @kanaazpereira | May 11, 2017
In reply to @croller68 "Hi, I have been fighting this severe abdominal pain that tends to stay near my belly..." + (show)
@croller68

Hi, I have been fighting this severe abdominal pain that tends to stay near my belly button and then likes to radiate left. Some days its manageable and some days I am literally doubled up waiting to die. I recently got a job at a hospital with awesome benefits so I starting talking to every doctor I could find as I support them all. Various pain management drugs were tried with little effect so I found a GI who scoped me from both ends and found nothing. Then they ordered a CT and wham there it was. I was diagnosed with mesenteric panniculitis but finding what is best to kill the pain is a battle still raging. They started me on 40mg of prednisone which works great but is causing other issues such as fast heart rate and elevated blood pressure not to mention makes me moody as hell. 10 years ago I was diagnosed with prostate cancer at age 38. I already have high blood pressure and I am also a prostate cancer survivor. My doctor is not all that versed on this condition and both the GI docs here at the hospital seem also not to know much about it. My doctor has tried other things but nothing works like the prednisone. I just can't handle the side effects. I wish I could find someone locally who has a good understanding of this disease and could help me find a way to cut out the pain. I was quite overweight and have been on a diet to the point that I have dropped 30 pounds but the pain some days continues to be unbearable. Starting to get frustrated.

Jump to this post

Hello @croller68,

Welcome to Connect. I'm so sorry to hear about your diagnosis, and glad that you've joined us on Connect; thanks for sharing your history.

Here is some information from Mayo Clinic, which you might find helpful:
http://mayocl.in/2pCvLAP
I'm tagging @billymac65 @k2aunt @danrofohio @mardellepoff @bertbiz @vdouglas @dennis127 @denia @doron with the hope that they will share their journey and experiences in dealing with mesenteric panniculitis.

@croller68, Mayo Clinic in Minnesota has been recognized as the best Gastroenterology & GI Surgery hospital in the nation for 2016-2017 by U.S. News & World Report; have you considered getting an opinion from there? How are you managing the pain at present?

REPLY
rpkelderman | @rpkelderman | May 11, 2017

Thanks for the reply. Pain is managed with Tylenol. Today I am having a pain in my right upper quadrant so will need to take T3

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rpkelderman | @rpkelderman | May 11, 2017

I sent a post yesterday. Not sure if my MP is autoimmune. I do have an enlarged spleen, my mesenteric (small intestine core)lymph nodes were enlarged but since my diagnosois I have been taking an anti inflammatory. The pain is usually in my mid section but can be in my spleen area or in my right liver area since I have hypo attenutatinging lesions on my liver. Nausea is intermittent with loss of appetite due to hyersensitive smell.
After 5 months south in Mexico my enhanced CT scan showed reduced lymph nodes but liver and spleen remain the same. I take Aleve twice a day for inflammation and pain.I live in western Canada. My family doctor doesn't really understand it so isn't willing to try prednisone. I am in limbo for now.

REPLY
Kanaaz Pereira, Connect Moderator | @kanaazpereira | May 11, 2017

Hello @rpkelderman,

I'd like to welcome you to Connect, and thank you so much for sharing your experiences.

There is a recent discussion about enlarged spleen (although it is in the Cancer group) that might interest you; you can view it by clicking on this link: http://mayocl.in/2r7LRDC
And here is some information about the same from Mayo Clinic: http://mayocl.in/2q8Ik9L

@rpkelderman, may I ask why you aren't sure about the MP being autoimmune? Do you have any questions about the lesions on your liver?

REPLY
PCfromFM | @pcfromfm | May 23, 2017
In reply to @shareie "I am in pain and in the er every 2 months..... moraphine,Nausea rx, prednisone...given at er..." + (show)
@shareie

I am in pain and in the er every 2 months..... moraphine,Nausea rx, prednisone...given at er t hen continue prednisone 5 days...I'm auto immune , still trying to figure out what involves and no one Dr wise can answer any questions...my intestines swell and I hurt base d during attacks which last until I get prednisone etc.....I am tired of routine uncontrollable routine I have every two months....what's your advice and is this similarity to anyone? Have Been told my condition is very rare

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Hi Lisa-I'm interested in any group that might be able to offer suggestions-have MP. Diagnosed about 17 years ago. I live very far north, in an area with really no support. So all info welcome!!

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PCfromFM | @pcfromfm | May 23, 2017

Hello Mr Bill. I am thrilled with this discussion group. I've been reading posts and found much info. I was diagnosed about 17 +- years ago at a University Hospital. But they felt I had the condition from about age 8. I'm 67 now and have been through many episodes. I live in the far north, no one knows about MP here. Just hearing of others experiences sadly does my heart good. I am not alone!! Please continue adding info, references and sharing!! Thank you!

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