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 group.

Hi @snoopdog, I hope you get the help you need, cause I know how it can be.

Well guys I went to see a surgeon today and. honestly it seems like its the same thing all over again. Went there and he claimed he could not find any reports that said I needed a biopsy or even had this disease. I handed him the reports I had that should that I had it and needed a biopsy and even then he looked and told me that those were from the town over. As such he said they are just trying to frighten you. Should him the head surgeon of his hospital said I needed it and all he did was tell me that he does not see that I do. That if that was the case the head surgeon would have done a biopsy. I get I have a rare disease, if I have it, but this really is getting old as of today it has been four years of me trying to get help, not to mention the first year they were claiming I had cancer. And I am still told by some I have colon cancer but that its find they do not see me needing any kind of treatment.

Tiring, any way I hope everyone else is doing ok.

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@kelloggk

I was diagnosed with interstitial lung fibrosis after cat scan so does anyone know of this disease?? Read it is rare only 200,000 cases a year in U.S. I feel it was caused by my gerd which I have had for years, although I have taken meds for it also have gastritis which I can’t seem to get rid of.

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Hello @kelloggk,

Welcome to Connect. I’m so sorry to hear about your diagnosis, and glad that you’ve come here to seek some answers.
Here’s some information about interstitial lung disease from Mayo Clinic: http://mayocl.in/1RrWfAh; and a Live Chat with patients and experts from Mayo Clinic, archived on the site.”Interstitial Lung Disease and Lung Transplant: What Patients Need to Know” You can watch it here: http://mayocl.in/2eb7DPJ

I’d like to introduce you to @alexander, @jazz, @terries, @nancyligon,@raincrowe, @spicegirl, @pd02, @powderpuf, @inspiration, @muskiemama, @richardlande, @pamelafrye1, @mairi, @oliver22, and others talking about pulmonary fibrosis. You can also view their discussion here: http://mayocl.in/2kPZF5s

@kelloggk, what treatment options have you considered? Do you have any questions about gastritis?

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@danielcamp

Hi @snoopdog, I hope you get the help you need, cause I know how it can be.

Well guys I went to see a surgeon today and. honestly it seems like its the same thing all over again. Went there and he claimed he could not find any reports that said I needed a biopsy or even had this disease. I handed him the reports I had that should that I had it and needed a biopsy and even then he looked and told me that those were from the town over. As such he said they are just trying to frighten you. Should him the head surgeon of his hospital said I needed it and all he did was tell me that he does not see that I do. That if that was the case the head surgeon would have done a biopsy. I get I have a rare disease, if I have it, but this really is getting old as of today it has been four years of me trying to get help, not to mention the first year they were claiming I had cancer. And I am still told by some I have colon cancer but that its find they do not see me needing any kind of treatment.

Tiring, any way I hope everyone else is doing ok.

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Hello @danielcamp, that is why I sound like a broken record recommending the Mayo Clinic. It may be a challenge to get there but you will be examined and diagnosed properly and by qualified doctors. Sorry you didn’t get the help you were hoping for. I spent two years trying to get help before the Mayo. Had the ER Dr wrinkle his face and ask me if I had cancer. I hear the same stories over and over.

What are your plans now?

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@londonmark

Just been diagnosed with Mesenteric Panniculitis by CT with contrast following an acute suspected small bowel obstruction and months of persistent upper right quadrant pain. I have a history of Celiac disease (diagnose by endoscopy 2010) and more recently Chronic Inflammatory Demylinating Polyradicular Neurooathy (by biopsy) both (all three?) of which are autoimmune. I take fentanyl and gabapentin for the constant debilitating pain. Interested in following this thread for others stories and to add my own situation to the record. Based in London I attend the well respected Atkinson Morley Dept at St Georges Hospital, London. (Any other U.K sufferers on here?) Mark

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Hi @londonmark,

We took your question (“Are there any proven links between mesenteric panniculitis and other autoimmune diseases I have, such as celiac disease or small fiber neuropathy?”) to Dr. Joseph Murray, M.D., gastroenterologist at Mayo Clinic. You can view his reply here: http://celiacblog.mayoclinic.org

Do let us know if you have any other questions or concerns.

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@londonmark

Just been diagnosed with Mesenteric Panniculitis by CT with contrast following an acute suspected small bowel obstruction and months of persistent upper right quadrant pain. I have a history of Celiac disease (diagnose by endoscopy 2010) and more recently Chronic Inflammatory Demylinating Polyradicular Neurooathy (by biopsy) both (all three?) of which are autoimmune. I take fentanyl and gabapentin for the constant debilitating pain. Interested in following this thread for others stories and to add my own situation to the record. Based in London I attend the well respected Atkinson Morley Dept at St Georges Hospital, London. (Any other U.K sufferers on here?) Mark

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the pcp is sending me to USF but i am trying to get into Moffitt because its good. but Mayo in Jacksonville florida is over capacity and the only one i could go to is in Rockchester minosotta. real far. i am bed ridden mostly lots of abdomenal pain back pain the whole area. low dose steroids right now and erythromycin long term too. but no treatment yet from a GI dr. only apts over a month away/ been to er  few times wen i started throwing up alot. im in alot of pain. 

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@londonmark

Just been diagnosed with Mesenteric Panniculitis by CT with contrast following an acute suspected small bowel obstruction and months of persistent upper right quadrant pain. I have a history of Celiac disease (diagnose by endoscopy 2010) and more recently Chronic Inflammatory Demylinating Polyradicular Neurooathy (by biopsy) both (all three?) of which are autoimmune. I take fentanyl and gabapentin for the constant debilitating pain. Interested in following this thread for others stories and to add my own situation to the record. Based in London I attend the well respected Atkinson Morley Dept at St Georges Hospital, London. (Any other U.K sufferers on here?) Mark

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@snoopdog.  I am so sorry that you are suffering.  I am no doctor, but all I can do is share with you what worked for me.  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 protocol2. 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.It 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.Best of luck to you!take care,Doron

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HI @snoopdog, hang in there and keep moving forward. I understand the issues with travel while in pain, bloated and other uncomfortable intestinal things going on. You just need to keep taking it a step at a time doing the best you can. Maybe you can try Florida Mayo again, taking it to a higher level. I never accept the first rejection. Sometimes you just need to find the right person. Maybe work at two options Moffitt and Mayo. take the best you can get.

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@londonmark

Just been diagnosed with Mesenteric Panniculitis by CT with contrast following an acute suspected small bowel obstruction and months of persistent upper right quadrant pain. I have a history of Celiac disease (diagnose by endoscopy 2010) and more recently Chronic Inflammatory Demylinating Polyradicular Neurooathy (by biopsy) both (all three?) of which are autoimmune. I take fentanyl and gabapentin for the constant debilitating pain. Interested in following this thread for others stories and to add my own situation to the record. Based in London I attend the well respected Atkinson Morley Dept at St Georges Hospital, London. (Any other U.K sufferers on here?) Mark

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@snoopdog, have you got in to see any other doctors, how are your doing?

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@lisas444 Hi,I am in here for first time coming from Australia with a severe case of Scelorsing messenteritis.No help,no one knows what to do,i need help as its killing me,faster than most.
Please can I join your group in hope to connect with like minded and perhaps a way to find help.thanks

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Hello @clover,

Welcome to Connect. I’m so sorry that you are going through this, but I want you to know that you’ve found a wonderful community here on Connect, and assure you that you will get much-needed support and answers.

There’s a great group of people here ready to share their experiences: please meet @bertbiz, @mardellepoff, @miker46, @billymac65, @mommasaid, @vdouglas, @doron, @ngilson, @billindc, @billymac65, @doron, @gmeg.

@clover, what symptoms are you dealing with at the moment?

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@clover

@lisas444 Hi,I am in here for first time coming from Australia with a severe case of Scelorsing messenteritis.No help,no one knows what to do,i need help as its killing me,faster than most.
Please can I join your group in hope to connect with like minded and perhaps a way to find help.thanks

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Hi clover. Would love to add you over. We have 326 people now with approximately 15 in Australia. It is private and not open forums for the public to see. I did send you a private message in response to your msg to me.
Lisa Schwart
Tulsa, Oklahoma
You can find me on Facebook

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@clover

@lisas444 Hi,I am in here for first time coming from Australia with a severe case of Scelorsing messenteritis.No help,no one knows what to do,i need help as its killing me,faster than most.
Please can I join your group in hope to connect with like minded and perhaps a way to find help.thanks

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Hi again clover, my daughter was diagnosed with SM back in 2008 when she was 14. Unfortunately her as has been very aggressive as well. She’s been on all the meds that have been tried for SM and even some on a trial basis. She’s had 18 abdominal surgeries for multiple bowel obstructions and the SM calcifications and masses have also affected the right side of her female organs and her right ureter. We live in Oklahoma and have been going back and forth to Cleveland Clinic in Ohio for just over a year now with the bowel transplant team. She’ll be listing for a small bowel transplant. Unfortunately, she developed complications in the last 11 hour abdominal surgery and has been in congestive heart failure. We recently Petitioned the FDA for 2 new drugs which we were able to obtain and she’s been making somewhat of an improvement with them. Once she has cardiac clearance she’ll be having another abd surgery in Cleveland.. she’s been on TPN feeds for several yrs now. We haven’t given up yet. Have many Australians in our group can help network you with hopefully for other doc’s near you. Talk soon. Lisa Schwart, Tulsa, oklahoma.

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