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.

kimh | @kimh | Feb 16, 2021

Really? I hadn't heard about hypothermia being a trigger! I had heard about abdominal surgeries and severe back trauma as possible triggers. For me, it seemed like an obvious connection. Though I have had several abdominal surgeries, two weeks before the onset on my MP symptoms, I had had a bad slip and fall on black ice and landed on cement right on my back, which btw, was a result of a freak ice storm on March 19 (2014)....two days before Spring, officially! And yes, you are right about the weather going on an upswing soon! Thank goodness, I'm aching everywhere and have a heating pad attached to me to try to help. I took an infrared sauna to help and it did for about half an hour! We are at -9 right now, better than you guys...but not much lol!!!

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1 reply
PCfromFM | @pcfromfm | Feb 16, 2021

Yes I’ve had a few abdominal surgeries as well which maybe cemented the issue no doubt. I was really ill at 8 -in bed with what they thought was appendicitis but wasn’t-doctor even came to my house. (Olden days -lol!) I have extreme reactions to a number of things -mouth full of sores and overall issues. I’d like to send you my email or can you find it-?

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1 reply
kimh | @kimh | Feb 16, 2021

I wouldn't know how to look for it!

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PCfromFM | @pcfromfm | Feb 16, 2021

Are you a member of the Facebook Mp group Kim?

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1 reply
constancelee | @constancelee | Feb 16, 2021
In reply to @kimh "Really? I hadn't heard about hypothermia being a trigger! I had heard about abdominal surgeries and..." + (show)
@kimh

Really? I hadn't heard about hypothermia being a trigger! I had heard about abdominal surgeries and severe back trauma as possible triggers. For me, it seemed like an obvious connection. Though I have had several abdominal surgeries, two weeks before the onset on my MP symptoms, I had had a bad slip and fall on black ice and landed on cement right on my back, which btw, was a result of a freak ice storm on March 19 (2014)....two days before Spring, officially! And yes, you are right about the weather going on an upswing soon! Thank goodness, I'm aching everywhere and have a heating pad attached to me to try to help. I took an infrared sauna to help and it did for about half an hour! We are at -9 right now, better than you guys...but not much lol!!!

Jump to this post

I find your discussion interesting. I was diagnosed with SM in 2019 by a biopsy that turned into a major exploratory surgery in Nebraska. He was so sure he’d find cancer. The mass had been seen on a CT. I had complained about having pain. I went on a gluten free diet. It helped somewhat, but overall I feel much better so I stayed on it. When I went to Mayo, they were confident my pain had nothing to do with my SM. They did treat me for some esophageal issues which improved life greatly. The biggest issue is they are treating me for a huge hernia I developed as a result of the first surgery. It was necessary for me to lose weight before surgery to ensure it’s success. They are helping me with my diet and healthy eating. The change in my eating has drastically improved the pain in my abdomen. I’ve lost 50 pounds, eat a low fat, non-sugar and non alcohol diet. I think all of that combined with a fairly stress free life (I retired after the 1st surgery) has made the difference. I truly do not want to take meds. I did celebrate Valentine’s Day with all the forbidden things I just mentioned and had a very rough Monday. For me.........it’s all about the diet. Hernia surgery is in March.

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2 replies
PCfromFM | @pcfromfm | Feb 16, 2021
In reply to @constancelee "I find your discussion interesting. I was diagnosed with SM in 2019 by a biopsy that..." + (show)
@constancelee

I find your discussion interesting. I was diagnosed with SM in 2019 by a biopsy that turned into a major exploratory surgery in Nebraska. He was so sure he’d find cancer. The mass had been seen on a CT. I had complained about having pain. I went on a gluten free diet. It helped somewhat, but overall I feel much better so I stayed on it. When I went to Mayo, they were confident my pain had nothing to do with my SM. They did treat me for some esophageal issues which improved life greatly. The biggest issue is they are treating me for a huge hernia I developed as a result of the first surgery. It was necessary for me to lose weight before surgery to ensure it’s success. They are helping me with my diet and healthy eating. The change in my eating has drastically improved the pain in my abdomen. I’ve lost 50 pounds, eat a low fat, non-sugar and non alcohol diet. I think all of that combined with a fairly stress free life (I retired after the 1st surgery) has made the difference. I truly do not want to take meds. I did celebrate Valentine’s Day with all the forbidden things I just mentioned and had a very rough Monday. For me.........it’s all about the diet. Hernia surgery is in March.

Jump to this post

Welcome @constancelee to our discussion. Good job loosing weight -never easy! The first time I mentioned good as a strong irritating factor on the Facebook page I had the admin give me quite a blast. But I have continued to talk about it and get ideas from others -and it seems many of us have real problems with certain foods. Maybe a chemical thing somehow but I know -for me-it’s another factor like any other stressor. Good luck with your surgery! I’m certain it will improve many parts of your life!

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1 reply
kimh | @kimh | Feb 16, 2021
In reply to @pcfromfm "Are you a member of the Facebook Mp group Kim?" + (show)
@pcfromfm

Are you a member of the Facebook Mp group Kim?

Jump to this post

No. I'm not a FB kinda gal lol

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kimh | @kimh | Feb 16, 2021
In reply to @constancelee "I find your discussion interesting. I was diagnosed with SM in 2019 by a biopsy that..." + (show)
@constancelee

I find your discussion interesting. I was diagnosed with SM in 2019 by a biopsy that turned into a major exploratory surgery in Nebraska. He was so sure he’d find cancer. The mass had been seen on a CT. I had complained about having pain. I went on a gluten free diet. It helped somewhat, but overall I feel much better so I stayed on it. When I went to Mayo, they were confident my pain had nothing to do with my SM. They did treat me for some esophageal issues which improved life greatly. The biggest issue is they are treating me for a huge hernia I developed as a result of the first surgery. It was necessary for me to lose weight before surgery to ensure it’s success. They are helping me with my diet and healthy eating. The change in my eating has drastically improved the pain in my abdomen. I’ve lost 50 pounds, eat a low fat, non-sugar and non alcohol diet. I think all of that combined with a fairly stress free life (I retired after the 1st surgery) has made the difference. I truly do not want to take meds. I did celebrate Valentine’s Day with all the forbidden things I just mentioned and had a very rough Monday. For me.........it’s all about the diet. Hernia surgery is in March.

Jump to this post

Welcome @constancelee . I also had a surgical biopsy done to confirm the diagnosis was MP and not anything worse. The doctors were worried about it being lymphoma. I'm sure that I got the better diagnosis. What is SM? Do you still have it, despite also having a hernia? I have become painfully aware that our bodies can have more than one thing go wrong! Congrats on the weight loss, btw! That's a wow!!!

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1 reply
PCfromFM | @pcfromfm | Feb 16, 2021
In reply to @pcfromfm "Welcome @constancelee to our discussion. Good job loosing weight -never easy! The first time I mentioned..." + (show)
@pcfromfm

Welcome @constancelee to our discussion. Good job loosing weight -never easy! The first time I mentioned good as a strong irritating factor on the Facebook page I had the admin give me quite a blast. But I have continued to talk about it and get ideas from others -and it seems many of us have real problems with certain foods. Maybe a chemical thing somehow but I know -for me-it’s another factor like any other stressor. Good luck with your surgery! I’m certain it will improve many parts of your life!

Jump to this post

I’m generally not but have been lately -there is a extremely informative closed MP site that lays out much of the research info -worth looking at-and many members from around the world.

REPLY
1 reply
kimh | @kimh | Feb 16, 2021
In reply to @pcfromfm "I’m generally not but have been lately -there is a extremely informative closed MP site that..." + (show)
@pcfromfm

I’m generally not but have been lately -there is a extremely informative closed MP site that lays out much of the research info -worth looking at-and many members from around the world.

Jump to this post

Maybe worth a check out....

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