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.

@vdouglas

Hello @poppy73, how are you doing this evening?
Von

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I tend to think trauma for me. I was hit head on by a drunk driver about a decade ago. It is a unwanted gift that just keeps on giving. I was smashed from behind by a unbelted passenger into steering column. But I think it was seat belt and air bag that saved me and finished my gut off.

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@vdouglas

Hello @poppy73, how are you doing this evening?
Von

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@poppy73 ,Thank you very much for the kind words and the advice. Cough is gone full steam recovery mode.
Thank you,
Von

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Thank you @vdouglas! Very kind words! All of these posts help me to get and keep perspective on this crazy MP. Just feeling I am not alone anymore-worth tons of positive regard. I sure find lots of rest is the #1 key for me. Never easy but more so as I age, rest-as a state of mind as much as a physical state is imperative. I really have few evenings that include “plans”. Plans more then feet up and in some comatose state! I have 4 children and 14 grand children and a husband who will never retire but with that in mind—rest is still my first key! A positive, productive, creative state of mind -all good! Having no Doctor I must be my own manager as much as possible, at this point.

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@vdouglas

Hello @poppy73, how are you doing this evening?
Von

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Well, I had a severe fall on black ice (another reason to hate winter!) and several abdominal surgeries which may be a factor as well. I also have hypothyroidism. In this instance, I had been under a lot of stress, some of it good stress, but also a very big upset. My mother has ITP and hypothyroidism, so there is evidence of autoimmune disease in my family as well.

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@vdouglas

Hello @poppy73, how are you doing this evening?
Von

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Wow! I'm glad that you survived such a horrific accident, but you are so right about that unwanted gift. How can trauma cause an autoimmune disease? Do our bodies still feel ill from the trauma? So many people have back and/or abdominal traumas, why do only a few of us develop an autoimmune disease from it?

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@pcfromfm , Thank you. Even though this disease cannot be cured it can be lived with and you show us that. We each find our own way of coping and as we share it with others we are each able to add something else to our "coping bag of tricks".Some have terrible struggles and my heart just breaks for them because I have felt the pain, bloating, nausea etc. but generally it can be manageable as the "study 92 patients" shows us.
Again, positive minded people like you are a great inspiration for those that suffer so terribly and for each and every one of us.
Regarding your mention of family, I think a husband that will never retire is such a rare virtue in today's world, you are very lucky. 14 grand children really shows that life has a great purpose.
Best wishes,
@vdouglas
Von

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@vdouglas

Hello @poppy73, how are you doing this evening?
Von

Jump to this post

Not sure if there is connection between trauma and autoimmune. The doctors I had that diagnosed me suggested that either might be reason I have it. But that there is no definite cause as yet for those who have the disease or it’s progressions. Not sure if that’s changed. MS runs in my Dads family with three that I know of (it has shown up a bit later in life for all of them so far) and my Mother also had Hypothyroidism and some undiagnosed issues. My brother has some mayor health concerns but no diagnoses. So the guessing continues and I watch the younger ones in the family closely. Keep smiling, keep moving= my moto! But I sure hate to use Predisone. Maybe I have had to for too long and to many times, not sure. Side effects not good although it does seem to make a difference. So R and R as much as possible for me. Anyone else find something besides these drugs that definitely help?

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@vdouglas

@pcfromfm , Thank you. Even though this disease cannot be cured it can be lived with and you show us that. We each find our own way of coping and as we share it with others we are each able to add something else to our "coping bag of tricks".Some have terrible struggles and my heart just breaks for them because I have felt the pain, bloating, nausea etc. but generally it can be manageable as the "study 92 patients" shows us.
Again, positive minded people like you are a great inspiration for those that suffer so terribly and for each and every one of us.
Regarding your mention of family, I think a husband that will never retire is such a rare virtue in today's world, you are very lucky. 14 grand children really shows that life has a great purpose.
Best wishes,
@vdouglas
Von

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You are so right @vdouglas-I have been totally blessed! His attitude and life’s direction has helped me work at picking up and motoring on! These sweet young ones keep me in “awe” everyday! I very seldom mention life’s struggles, except within this group. Thank you for helping me find a place to be able to share! I watch and listen for new info constantly, New hope for the future. I feel, most days, optimistic that there is no place to go but up, with ideas and medications to try to help. Thank all for giving me a spot to reach out to!

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@vdouglas

Hello @poppy73, how are you doing this evening?
Von

Jump to this post

@pcfromfm ,You had inquired about automune in our family's. My mother was recently diagnosed with Polymyalgia rheumatica, My sister recently with Fibromyalgia and my brother had an emergency resection, cause unknown, just researching that. A grandson with Vitiligo and many more suspected.
@vdouglas
Von

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@pcfromfm

Thank you @vdouglas! Very kind words! All of these posts help me to get and keep perspective on this crazy MP. Just feeling I am not alone anymore-worth tons of positive regard. I sure find lots of rest is the #1 key for me. Never easy but more so as I age, rest-as a state of mind as much as a physical state is imperative. I really have few evenings that include “plans”. Plans more then feet up and in some comatose state! I have 4 children and 14 grand children and a husband who will never retire but with that in mind—rest is still my first key! A positive, productive, creative state of mind -all good! Having no Doctor I must be my own manager as much as possible, at this point.

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Can you please tell me what the symptoms are. I have many issues with my stomach and nothing doctors are doing are helping me. I had a large ulcer healed I have Barrett’s esophagus from GERD. I HAVE COLON POLYPS THAT HAVE TO BE REMIVED EVERY 6 months. I continue to have severe bloating and high stomCh pain on right side which radiates to back and right shoulder. No gall bladder stone detected. I am at wits end and don’t know where to turn anymore. Any advice appreciated. I hope you do well with your treatment for your problem. Just not sure what this entails.

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