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

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ngilson | @ngilson | Jan 26, 2016

Hi everyone, I'm Nancy from ID. I was diagnosed with MP in April 2015. Went thru 4 months of Prednisone and have been asymptomatic since. Followup CT 2 weeks ago still shows MP. They are recommending that I go to the Mayo for second opinion and followup. Any suggestions or recommendations since I'm currently not having any symptoms??

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BillyMac65 | @billymac65 | Jan 26, 2016

If they are recommending Mayo, I don't see why you wouldn't go. They were fantastic when I went. They made no promises on the future course of this for me, but so far so good. Only other advise I have is to try to avoid CT scans and opt for MRI's when you have the choice.

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1 reply
ron22 | @ron22 | Jan 27, 2016

My dad has had two surgeries since November 2015 for a small bowel obstruction that is still unresolved. He is currently on TPN for nutrition. He is likely headed for a third surgery later this year. Based on the pathology reports of biopsies taken at second surgery and the discovery of a large inflammatory mass attached to the small bowel, we believe this may be a severe case of mesenteric panniculitis. We have been unsuccessful in trying to get his current doctors to obtain definitive diagnosis so that a course of steroids may be attempted. Does anyone have any references for GI doctors with expertise in mesenteric panniculitis especially in the Fort Lauderdale or West Palm Beach area of Florida? Thanks.

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ngilson | @ngilson | Jan 27, 2016
In reply to @billymac65 "If they are recommending Mayo, I don't see why you wouldn't go. They were fantastic when..." + (show)
@billymac65

If they are recommending Mayo, I don't see why you wouldn't go. They were fantastic when I went. They made no promises on the future course of this for me, but so far so good. Only other advise I have is to try to avoid CT scans and opt for MRI's when you have the choice.

Jump to this post

Thank you for the response and the info on the MRI vs CT scan, definitely will keep that in mind. My doctors here are very honest that they really don't know anything about MP. I've read that Dr. Darrell Pardi at the Minnesota clinic has done research in this, although the Phoenix clinic is closer for me. If anyone has any recommendation of a specific Mayo doctor they've seen, I would be interested. I was so thankful when I found this site and for all of the information that has been shared.

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LS4 / Lisa Schwart Tulsa Oklahoma (FB page) | @lisas444 | Jan 27, 2016

Hi Ron - i'm going to send you a private message on this page here. My daughter has sclerosing mesenteritis as well and diagnosed at age 14 and has 17 abdominal surgeries now with another one about to happen next month for multiple bowel obstructions and has also been on TPN off/on since 2008 and full time the last 2.5 years. We've been in Cleveland now for testing and evaluation for a bowel transplant to hopefully cure her of SM. We are in Tulsa, Oklahoma. We have an ever growing group with 207 members in it with people all over the US and several also from other countries all with SM or MP. We have a handful there in Florida that i'd love to put you in touch with. We have a good handful in our group with severe SM/MP and other are mild and some are in between and we've lost 3 in the past year with SM after their diagnosis. 🙂 My name is Lisa Schwartz in Tulsa, OK

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2 replies
ron22 | @ron22 | Jan 27, 2016
In reply to @lisas444 "Hi Ron - i'm going to send you a private message on this page here. My..." + (show)
@lisas444

Hi Ron - i'm going to send you a private message on this page here. My daughter has sclerosing mesenteritis as well and diagnosed at age 14 and has 17 abdominal surgeries now with another one about to happen next month for multiple bowel obstructions and has also been on TPN off/on since 2008 and full time the last 2.5 years. We've been in Cleveland now for testing and evaluation for a bowel transplant to hopefully cure her of SM. We are in Tulsa, Oklahoma. We have an ever growing group with 207 members in it with people all over the US and several also from other countries all with SM or MP. We have a handful there in Florida that i'd love to put you in touch with. We have a good handful in our group with severe SM/MP and other are mild and some are in between and we've lost 3 in the past year with SM after their diagnosis. 🙂 My name is Lisa Schwartz in Tulsa, OK

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Hi Lisa,
Please send me the info. on the Florida contacts.  Thanks.

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msvivian | @msvivian | Jan 28, 2016

I just joined this group as I have been diagnosed with mesenteric panniculitis after suffering through a number of attacks since last year. I also have many other chronic health issues which only complicates the situation. I am a 62 year old female and I live in Michigan. I believe I am the only one in my health system in southeastern Michigan who has this disease so I am thinking I may have to travel to get help. The problem with travel is that it is expensive and it is challenging when one has many health issues. I would like to know if anyone in this group has the name of any doctors in Michigan who have experience in treating this illness.

I have read all of your posts and I wish to express that I am so sorry that you are all experiencing or have a close family member experiencing this horrible illness. Lisa S, from Oklahoma, I especially feel for you and for your daughter who has had so many surgeries and procedures at such a young age. I hope you have good luck with her future treatment so that she (and you)
can have quality of life.

I am shocked that this disease is as rare as it is and the treatments are so "hit and miss." There must be a reason that we are all on this journey together and I am hopeful that it is to find better treatment and cures.

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Jan 28, 2016
In reply to @msvivian "I just joined this group as I have been diagnosed with mesenteric panniculitis after suffering through..." + (show)
@msvivian

I just joined this group as I have been diagnosed with mesenteric panniculitis after suffering through a number of attacks since last year. I also have many other chronic health issues which only complicates the situation. I am a 62 year old female and I live in Michigan. I believe I am the only one in my health system in southeastern Michigan who has this disease so I am thinking I may have to travel to get help. The problem with travel is that it is expensive and it is challenging when one has many health issues. I would like to know if anyone in this group has the name of any doctors in Michigan who have experience in treating this illness.

I have read all of your posts and I wish to express that I am so sorry that you are all experiencing or have a close family member experiencing this horrible illness. Lisa S, from Oklahoma, I especially feel for you and for your daughter who has had so many surgeries and procedures at such a young age. I hope you have good luck with her future treatment so that she (and you)
can have quality of life.

I am shocked that this disease is as rare as it is and the treatments are so "hit and miss." There must be a reason that we are all on this journey together and I am hopeful that it is to find better treatment and cures.

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Hi @msvivian,
Welcome to Connect, and especially to this mesenteric panniculitis group. I moved your post to this discussion thread to bring you into the conversation.

Were you only recently diagnosed with mesenteric panniculitis?

Colleen
Connect Community Director

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1 reply
Angela M | @tardis6167 | Jan 28, 2016
In reply to @tardis6167 "Hi. My name is Angela and I live in Australia. It has been 2-3 yrs since..." + (show)
@tardis6167

Hi. My name is Angela and I live in Australia. It has been 2-3 yrs since I last posted. I was diagnosed with M.P nearly 7 yrs ago and have had flare ups every 6 months. Some have been severe and I have had to be hospitalised for pain management but usually if I get on to Prednisolone early enough and take Oxycodone and Tramadol, I can manage it. I have a good doctor who has read up as much as possible on the illness but trusts me to know when I am having an attack which is usually confirmed by CT. It has now been 12 months since my last bout which was very severe and lasted longer than usual. In the early years I noticed that during an attack, eating meat brought about more pain so over the years I have developed an aversion to most meats and usually live on chicken and fish. I am beginning to think that this change in my diet is the result for me not getting an attack in line with the usual six monthly cycle that I have experienced in the past. Have any other sufferers changed their diet in this way and noticed any benefits.

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Hi Angela here again.
Since my last conversation was barely posted I have gone down with another flare up and it is a really bad one. So my theory about not eating meat is not totally valid any more but maybe it helped in delaying the flare up. Well i will stick with the theory and hope it does help in reducing the times I have to put up with this awful condition.

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Jan 28, 2016
In reply to @tardis6167 "Hi. My name is Angela and I live in Australia. It has been 2-3 yrs since..." + (show)
@tardis6167

Hi. My name is Angela and I live in Australia. It has been 2-3 yrs since I last posted. I was diagnosed with M.P nearly 7 yrs ago and have had flare ups every 6 months. Some have been severe and I have had to be hospitalised for pain management but usually if I get on to Prednisolone early enough and take Oxycodone and Tramadol, I can manage it. I have a good doctor who has read up as much as possible on the illness but trusts me to know when I am having an attack which is usually confirmed by CT. It has now been 12 months since my last bout which was very severe and lasted longer than usual. In the early years I noticed that during an attack, eating meat brought about more pain so over the years I have developed an aversion to most meats and usually live on chicken and fish. I am beginning to think that this change in my diet is the result for me not getting an attack in line with the usual six monthly cycle that I have experienced in the past. Have any other sufferers changed their diet in this way and noticed any benefits.

Jump to this post

Welcome back Angela. So sorry to hear that you were down with another flare-up, and a particularly bad one. Glad you're back.

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