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.

@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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New member with MP over 6 yrs ago..looking for or group to talk about other experiences and/or home treatments.

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@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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Welcome @bakb!
Please meet @vdouglas @bertbiz @dennisl27 @snoopdog @doron and others connecting here on Connect. We look forward to getting to know you. Why don’t you start by telling us a bit more about yourself and your 6 year journey with MP.

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Please alllow me to join your group. I have MP for approximately 5-6 years. I am maintaining between flare ups on a low maintenance dosage of hydrocodone. I am interested if others have dietary thoughts to share and/or exercises to help. Thank you.

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@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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Hello everyone. My initial CT was in follow up to check on tumor on kidney. Initially my local physician referred me to GI doctor. No new news/help/recommendations there. Thus without going to Mayo in MtN r elsewhere my local doctor has been treating me for years. For flare ups I go on a low dose of prednisone with tapering after 5 days to coming off med. For pain which is constant I am on a low doseage of Hydrocodone AM & PM which allows me to function. I have diverticulitis from many surgeries over the years and adhesions that add to the discomfort. I have tried many types of diets to see if that avenue would help in easing pain/discomfort which has not been effective. I wondering if someone has a “home remedy” diet that may seem effective for the person trying it. I am 65 yrs old and retired – and just looking for information. Will follow this and appreciate all input.

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@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 Bill,
So sorry you are dealing with this. When I was first diagnosed, I used the FODMAP diet. I still don’t eat raw vegetables, but have been able to incorporate cooked greens back into my diet. Good luck!

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@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 @bakb

I was diagnosed back in Oct 2016 with MP. I was able to see a good GI doctor that is treating several MP patients in December. She uses Mobic (meloxicam) instead of the prednisone bc it has fewer long term side effects. After 6 or 7 weeks I began to feel relief from all the swelling and pain. I stick to the FODMAP diet. Like @bertbiz I can’t eat any raw veggies. Certain foods cause me to have an almost immediate “meltdown” where I spend the next few hours in the bathroom. Since I started taking the Mobic and being very strict with my diet, my quality of life has improved. I still have to go work every day, so I try to minimize my risk of having problems during work hours.

The information here is so awesome and helpful. This is a great community to share your symptoms and concerns with.

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@kanaazpereira

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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Hello to you as well. I have Sclerosing Messenteritis.I have a lagre tumor,mostly right side,covering the small and the large bowel.
I was opened a year ago to have a biospy,they thought carciniod,it is a big mass,I look 9 months pregnant too..
The surgeon got his nodes to look at,as there were nodes,but I began to bleed out when they tried to reduce the tumor growth.
So they sewed me up and now i suffer so much.I have small obstructions a lot now,i have been eating very little hard food,i just went for a MRI 2 days ago to see what it has done know.
My rheumy seems very unphased,but i cant eat,and the pooing stops too,so my GP and myself decidied if I can find a Gastro Surgeon who is willing to open me up I will take the risk.
If I dont do it i will die home soon.If id doit i might die from complications,but until I am dead I will take a chance to be here a bit longer with mykids ad graandkids.
I really need to find a good surgeon to contact in Sydney,I live in Broken Hill,a small town,but will fly to Sydney to take the chance on this..does anyone know of any Doctors/Surgeons who have been around SM??
Thanks for any help given in advance 🙂

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@bakb

Please alllow me to join your group. I have MP for approximately 5-6 years. I am maintaining between flare ups on a low maintenance dosage of hydrocodone. I am interested if others have dietary thoughts to share and/or exercises to help. Thank you.

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@bakb Welcome to the group.

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Thank you. This is a great place to share, I don’t feel so alone. Already learning from others, ready to make changes and hopefully feel healthier.

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@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 there,It seems like you are looking for dietary solutions, and I might add that for some they don't work.  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 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.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.Best of luck to you!take care,Doron

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@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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Thanks Doron, and yes I am looking for dietary solutions to my MP. Yes I have auto-immune and diverticulitis. I will certainly look at these suggestions and bring to my local MD. You said you saw a mesenteric specialist – may I ask where he/she was located? I am in SD so Mayo clinic is a possibility. I know Dr. Pardi is at Mayo clinic but to get an appointment takes months. Thus looking for possible solutions to help me now. I thank all for this group as I was very frustrated before. At least now I have suggestions and will work on what works best for me. 🙂 Betty

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@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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So my Dr. is in Chicago, but he is on leave for almost a year now.  Once he comes back I will let you know.  I used to diet without the supplements, and still had gerd and felt bloated quite often. Now with diet and supplements I don't feel bloated.  Most of these diets are elimination diets and you can add things back in slowly.  Good luck, Doron

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