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.

lauralhv | @lauralhv | Jul 6, 2022

In reply to @gmeg "Hi The lumps and bumps were described by an MD long ago as fatty tissue under..." + (show)

What did your Dr. say what to do to dissolve them? TY in advance.

mom2three | @mom2three | Jul 8, 2022

In reply to @nedradenise "Does anyone have this rare inflammatory disease? If so how do you deal with the pain..." + (show)

Hello I have this condition the way I deal with the pain is raking Turmeric
I also changed my diet to only eating anti inflammotory foods. No Caffeine
Beef in moderation
Pork in moderation
I mainly eat chicken and turkey.
No sugar.

A gluten free diet can help also.

Starches I only eat brown rice and if potatoes a small portion.

Whole grain cereals
Beans are great to I have done alot of research. Changing my diet and taking Turmeric has helped alot

Anti inflammatory is the key to keeping this rare disease at bay.
eating junk food and stress Causes flares as well as eating sugar and drinking sodas.

The antinflammatory diet also helps to stay regular.

Im all about natural I only take medicine when needed.

Hope this helps

smezaael | @smezaael | Jul 9, 2022

In reply to @mom2three "Hello I have this condition the way I deal with the pain is raking Turmeric I..." + (show)

What kind of medication you take when need , my family only offer me Ibuprofen, I start drinking Tumeric tea with little black paper or do You think Tumeric pills better, It’s rate disease am not getting any help from doctors , am still looking for the right doctor heard about it or know how to deal with it. Thanks

lobell2 | @lobell2 | Jul 11, 2022

In reply to @lobell2 "The GI doctor listened and took notes. He doesn't want to say MP as the CT..." + (show)

Just had my follow up appointment with the GI doctor. Well the CT is correct it is MP. Again- he hasn't dealt with anyone with this. He could put me on tamoxifen and prednisone- from what he's read. My choice... He said I am welcome to come back any time. I left in tears.
I don't know where to turn. I haven't found what triggers mine and don't want to be on medication.
Feeling lost in the wilderness.

maxmom25 | @maxmom25 | Jul 16, 2022

In reply to @amandaa "Hi @nnewins, welcome to Mayo Clinic Connect. If you scroll to the top of this page..." + (show)

Yes I have

informe | @informe | Jul 16, 2022

Is there a diet for Sclerosing mesenteritis?

smezaael | @smezaael | Jul 17, 2022

In reply to @informe "Is there a diet for Sclerosing mesenteritis?" + (show)

There is diet when I search on the internet, so fare avoid diary’s except yogurt it help build probiotics , no wheats , no sugar, no Caffeine

informe | @informe | Jul 17, 2022

In reply to @smezaael "There is diet when I search on the internet, so fare avoid diary’s except yogurt it..." + (show)

Thank you.

Sharon Barker

maxmom25 | @maxmom25 | Jul 19, 2022

Try Removing sugar and dairy. When having a flare up stay on soft food diet. Small portions. I’m recently diagnosed and it’s trial and error as I think we all have different triggers. I stopped gluten and meat as well. Sticking to anti inflammatory foods. Mostly shakes with a little chia seed and I take a probiotic. It’s been quite a process. I just finished a three day water fast. Best of luck to all

irishgirl1 | @irishgirl1 | Jul 27, 2022

Hi, so grateful to have found this group. I’m a44 year old Irish female diagnosed with MP two years ago with no other underlying conditions. Like many others on here my doctor had never treated anyone with this before. My gastric consultant said it’s an autoimmune disease so passed me off to a rheumatologist who said as I had no obvious joint problems that it wasn’t her area so I get fobbed off again and left to fend for myself. My GP suggested I take prednisone for flare ups and that usually helps for a while. Currently going through a flare up right now with abdominal pain, back pain under my rib cage, bloating, constipation and pain in my right eye.