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

@poppy73

It does help. It is hard to apply old hard medical information.I about dropped my tablet when I looked up the term “Messentric Panniculitis ” . The information is scary and brief .Have you found the medical community to be accepting and helpful ?

I have felt like people just want to keep passing me to the next person ….

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Not what you want to do when you are in pain, but I agree walk it off 🙂 Thing that is going to be tough for me is going back
to lifting once I go back to work for the school district. I may have to find a easier line of work.

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The doctors don’t have to do a biopsy to diagnose MP. I was diagnosed through a CT Scan. Every six months I get another CT to check if anything has changed. MP is located in the Messentary and is considered an auto-immune disease. When you do see your doctor, bring a notepad full of questions. You are your own best advocate.

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I will.So it is a auto -immune disease? Do they refer your u to a rheumatologist?

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@poppy73

I will.So it is a auto -immune disease? Do they refer your u to a rheumatologist?

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I have only seen a GI doctor.

Liked by Poppy73

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@kanaazpereira

Hello @judy147,

Welcome to Connect; we’re so glad you joined us, and thank you for sharing your history and diagnosis.

I’d like to introduce you to @billymac65 @danrofohio @vdouglas @mardellepoff @billindc @bertbiz @bakb @snoopdog @dennisl27 @denia @doron @croller68 @gmeg, all of whom have been coping with mesenteric panniculitis (MP), or have loved ones with MP; I’m confident they will share their insights and have more information that might help you.

You may find the following resource helpful to learn more about Avascular necrosis or AVN: http://www.mayoclinic.org/diseases-conditions/avascular-necrosis/basics/treatment/con-20025517

I’d encourage you to view these existing discussions on Mayo Clinic Connect:
– Early stages of avn: https://connect.mayoclinic.org/discussion/early-stages-of-avn/
– Core Decompression Surgery: https://connect.mayoclinic.org/discussion/core-decompression-surgery/
– Do you have chronic hip, knee, shoulder or other joint pain? You may have avascular necrosis: https://connect.mayoclinic.org/discussion/do-you-have-chronic-hip-knee-shoulder-or-other-joint-pain-you-may-have-avascular-necrosis/

I’m also tagging @guener @jay_baruch @sma1952 @billv123 @sebley12 @tllamber @mardigras, and hope they will return to share their experiences about steroid-induced AVN

@judy147, did you have any significant symptoms that led to the diagnosis of MP? How do you currently manage pain relief from the AVN?

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Thank you for your help. Sorry it has taken me so long to get back but I was having computer problems. I had gone into the ER with flank pain for possible kidney stone (which pain wasn’t real bad so did not think it was a kidney stone)and was diagnosed through a CT scan. I was put on Flagyl, which caused bad side effects and had to stop. I can’t say I really have symptoms other than I have a feeling like some thing is there in my epigastric area and bad reflux. I have been dealing with this for a couple of years. I do get a feeling of nausea at times but it is mild. I have seen a gastroenterologist for this and he did an endoscopy and said I had some gastritis and to watch what I eat. I have been on Nexium for years but it really does not help. I was referred to a general surgeon from the ER and had an UGI and an esophageal manometry done. UGI showed a small sliding hiatal hernia, still waiting on the esophageal manometry results. Can my reflux be caused by the MP? In my readings so far, I have not seen this as a symptom. There is a procedure they can do to help the GERD but it involves surgery and I have read that surgery could aggravate it. Any and all information will be appreciated.

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@amilhim

is there a cure for Mesenteric Panniculitis? someone I know has just been diagnosed with this disease after so many years of episodic abdominal pain and apparently wrong diagnosis. she is in her late seventies, is it normal at this age?

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43 here!

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@bertbiz

Hi @poppy73. MP is a rare condition/auto immune disease. Just speaking from personal experience, the radiologist that read my CT Scan was kind of “excited” because he had never seen an actual case, he had just read about. Knowing that this condition has a name was really helpful to me. That meant it probably had a treatment. The first thing my doctors did was put me on Prednisone for 3 months. That helped with reducing the inflammation. I had a few side effects, but nothing I couldn’t handle. The next thing I did was change my diet. I use what’s called the FODMAP diet. http://www.ibsdiets.org/fodmap-diet/fodmap-food-list/ That was a great guide how to start eating again. Then little by little I could try some of the foods on the “no” list. Although it says it’s for ibs, it does work for MP, as well. I feel very fortunate that my MP was caught fairly early. What I deal with now are occasional flare-ups, but not very often. I was diagnosed in May of 2016. I have discussed with my doctors that I thought I was predisposed to this condition because my dad had Crohn’s disease and my mom had Non-Hodgkin’s Lymphoma. So this being an inflammation of the lymph nodes in the messentary connected to the intestines seemed to be a perfect storm. We are lucky because the messenatry is getting a lot of attention and research. It was discovered by a Dr. in Ireland that the messentary is not just a bridge between from the intestine, but an organ unto itself. So that will help discover why some people get this and how better to treat it.
I hope this “dissertation” has helped you a little bit. There is another support group for MP and SM on Facebook if you are interested in being on more than one site.
Take Care,
bertbiz

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I just got my diagnosis of MP on Sunday. The ER doc knew nothing as with my PC. My gastro is engaged but has only seem related issues.

I signed up for connect but I cannot find this group to put in my profile. I’m puzzled? I’m surprised it is allowing me to post. Is there something I’m doing wrong?

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my name is iyad i was I was diagnosed with mesenteric panniculitis
can any one help me to find adoctor Specialist in this disease

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@ebaker8

my name is iyad i was I was diagnosed with mesenteric panniculitis
can any one help me to find adoctor Specialist in this disease

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ask places like Sloan Kettering, or Mayo, or Cleveland Clinic, etc., who of their graduates might possible have exterience in this. Talk to their alumni offices. Also ask any med schools in your area. Also, read the list of writers of materials at NORD, or NCBI, or NIH who have written about the stuff in the last ten years. mesenteric panniculitis. I did not even know such a thing existed, but it sounds like a pain in the behind.

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@ebaker8

my name is iyad i was I was diagnosed with mesenteric panniculitis
can any one help me to find adoctor Specialist in this disease

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Hello @ebaker8. Welcome to Mayo Clinic Connect!

I would encourage you to call Mayo Clinic http://mayocl.in/1mtmR63 for more specific answers to your questions. We do have physicians that specialize in this and you can ask the scheduling desk about them specifically.

I also encourage you to read through past posts in this discussion; they are incredibly informative. What questions in particular do you have about MP?

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Well its official , I am diagnosed. I guess it is good to know what is wrong. I am suppose to keep at food journal to see if certain foods bother me.
Does anyone have foods that seem to make their pain worse?

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Don’t know whether it is Angel’s Food Cake or Devil’s food cake. Or just remembering what I left behind.

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@poppy73

Well its official , I am diagnosed. I guess it is good to know what is wrong. I am suppose to keep at food journal to see if certain foods bother me.
Does anyone have foods that seem to make their pain worse?

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I started with the Auto immune protocol and added food back. My biggest issues are gluten, sugar, dairy, corn, tomatoes, nuts, alcohol (especially beer) in excess. Everyone is different, so auto immune protocol is a good start. You only need to be very strict for about 6 weeks before you start adding food back in. I would also look at taking supplements, especially probiotics. I like the supplements recommended by Chris Kresser. Good luck!

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I was diagnosed with sclerosing mesenteritis earlier this year. I found this forum recently and I have read every single message y’all have posted here! Getting a diagnosis after seventeen years of mysterious symptoms was a huge relief (as many of you know!). Finding this group, though, is even more of a relief and such a huge blessing! I’m so grateful for everything you have shared. There is so much priceless information here … not to mention a feeling of relief in not being alone in this.

For the benefit of others, I’ll share a few details of my story, which is very similar to what others have shared already. I hope it is helpful to someone.

Summary:
– 47 year old male living in Illinois
– Symptomatic episodically since 2000
– Symptomatic continuously since 2014
– Symptoms: abdominal pain (primarily upper left quad and lower left back, at times severe), night waking insomnia, bloating, painfully rigid abdomen (especially around the upper abdomen and at night), nausea, vomiting.
– Many GI and GP doctors (in CA and IL) stumped after many, many tests came back normal
– Initially, I lost a lot of weight since everything I ate seemed to make me sick (I’m 5’11” and was down to 130 lbs at one point)
– Diagnosed with MP by University of Chicago Medical Center’s (UCMC) Digestive Diseases Center in March (by CT scan)
– Biopsies of mesentery tissue and mesentery nodularity (enlarged lymph nodes) taken at University of Chicago’s Bernard A. Mitchell Hospital in May to rule out lymphoma.
– Surgeon observed inflammation, tissue necrosis, and sclerosing. Pathology was negative for lymphoma.
– Treatment with Prednisone and Tamoxifin started in May.
– Treatment stopped in July after no improvements were observed (and significant side effects experienced).
– UCMC then suggested, since I didn’t respond to treatment with Prednisone, that I travel to Mayo Clinic for further options
– I have a visit scheduled to Mayo Clinic’s Division of Gastroenterology and Hepatology in Rochester in October. Hopefully they can provide some additional treatment options.

There are a 4 things that have helped me stabilize my symptoms and reduce the occurrence of the most debilitating episodes over the last year:

1) Diet: I now eat primarily fatty red meat, grains, and dairy (which is pretty much exactly the opposite of what six GI/GP doctors in 2014 and 2015 recommended as a diet). I may be slowing moving toward a ketogenic diet. We’ll see. My former diet (vegetables, fish, and poultry only) now makes me very, very ill (and very quickly). Everyone is different and with MP/SM every dietary experiment is perilous (as many of you know from experience), but you have to find out what works for you. Just take it as slowly as possible. For me the Very Bad list includes: almost all vegetables (cooked or raw or even juiced), lean proteins, peanuts, seeds (and really anything dry and hard … like popcorn or granola), and any alcohol (I do miss my whiskey). I’m very fortunate and grateful that there are things I CAN eat. I know that many people are dealing with not being able to eat at all or having a feeding tube.

2) Sleep: I use a Medcline pillow to sleep with my torso angled up. I read that many of you have issues with different positions (I can’t imagine worsening pain with too much standing or sitting … that must be awful). For me, I’m unable to lay prone. Pain and a sort of tensing and rigidity in my abdomen start to grow shortly after laying down flat.

3) Sleep: Nighttime timed-release hyoscyamine (Symax Duotab) helps enormously for some reason. It is only recommended for short term use, but I’ve been taking it for well over a year now (and I understand many other people do as well). The only side effect for me seems to be blurry vision. One of my former GI doctors (in San Francisco) recommended it and it has been a life saver for me. If I stop taking it, I’m in agonizing pain within a few days.

4) Activity: Staying active, but doing it very gently, has helped enormously. Walking is good. Bicycling hurts. Golf has been good for me. Lifting and aggressive cardio are bad. Gentle yoga is good. “Yoga shred” (or whatever the current fitness yoga fad is called) is bad. Etc. Overall, walking is probably the best thing and helps the most.

The dietician at UCMC suggested the FODMAP diet, which many here have also suggested. I will be looking into that this week. I also noticed that many people here suggested the Paleo Autoimmune Protocol. That is new to me and I will definitely be reading more about it! Thank you.

Finally, one thing that helped me through the darkest months of this journey was Toni Bernhard’s book “How to Be Sick.” I highly recommend it for anyone dealing with long term, chronic illnesses … especially an illness as mysterious as the one we are experiencing.

My heart and my prayers go out to all of you who are suffering with this.
Locke

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Hello David (@lockedavid),

Welcome to Mayo Connect! We are so glad you found us. Thank you for sharing your health story and some really good information as well. Since you mentioned you have an appointment at the Rochester Mayo Clinic Campus in October I thought you might be interested in some short YouTube videos that may help you get around the area.

Here is link for the playlist of Mayo Clinic video tours on YouTube, click the small bars at the upper left corner of the screen
to see the list of videos. It will start playing the main video.

John

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