Mesenteric Panniculitis or Sclerosing Mesenteritis

Hello @adrussell, welcome to Mayo Clinic Connect. There is another active discussion on MP where your post will have more visibility. I'm tagging our moderator @kanaazpereira to see if we should move your post to the following discussion where you can meet others with similar health symptoms and learn more about MP. You may want to read through some of the discussion below and post any questions you might have there until other members respond.

Groups > Digestive Health > Mesenteric Panniculitis or Sclerosing Mesenteritis
-- https://connect.mayoclinic.org/discussion/mesenteric-panniculitis-or-schlerosing-mesentertis-auto-immune-around-small-intestine/

The National Organization for Rare Disorders has more information on Mesenteric Panniculitis here:
-- https://rarediseases.org/rare-diseases/mesenteric-panniculitis/

Do you have any specific questions you are trying to get answered?

John

Thank you John. I see where others discuss specific diets to control inflammation, more information on that would be great. Also, what other testing can be done to determine possible causes and treatments of the condition.

I wished I had some answers for you but I'm hoping one of the members in the Mesenteric Panniculitis or Sclerosing Mesenteritis discussion will be able to offer some suggestions. I did find a Mayo Clinic page that discusses a related diet that I think might apply and also another page on FODMAP diets here:

The role of lifestyle-related treatments for IBS
-- https://www.mayoclinic.org/medical-professionals/digestive-diseases/news/the-role-of-lifestyle-related-treatments-for-ibs/mac-20431272

Low FODMAP Diet for IBS: List of Foods to Eat and Avoid
https://www.medicinenet.com/low_fodmap_diet_list_of_foods_to_eat_and_avoid/article.htm#fodmap_foods_for_ibs_definition_and_facts

Just recently diagnosed with this condition, have ran ANA and was positive for inflammation. Had colonoscopy to rule out any tumors, diverticulitis, etc. All was good there. No waiting for more tests to be scheduled to see if there is an underlying cause. I have suffered from kidney stone for last 12 years. Actually went to er thinking I had another stone when they discovered the MP because of the enlarged lymph nodes and swelling. Anyone else suffer from this, have information they can share, etc. My family Dr. is really good about researching and referring to other Drs. when he doesn't know. Just seems there isn't much information about this condition.

Hi @adrussell,

I moved your discussion and combined it with this existing discussion as I thought it would be beneficial for you to be introduced to the many members who have discussed much of what you are experiencing.
If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members talking about their or their loved ones' experiences.

Thank you

I feel your frustration. I am right there with you. I recently had the colonoscopy done to verify there was no underlying issues there causing it. All was good. My ANA blood work came back positive with inflammation so I am waiting to see what other tests the dr. wants to do to try and narrow down a more specific autoimmune disease. Other wise we are thinking that all the lithotripsy's Ive had on Kidneys is the cause however the last one I had was in June. Hang in there.

I was diagnosed 3 weeks ago after being sick for almost 9 months.... we will be traveling from Ohio to Minnesota Jan 20 to see Dr Pardi’s colleague..... hoping for some relief. My ca 125 is 949.1 and my pain is excruciating........

Hello @dmaquino

Welcome to Mayo Connect. I'm sure you are relieved to finally have a diagnosis after 9 months of pain. I'm also glad to hear that you will be seeing a doctor at Mayo.

If you are comfortable sharing more how was this diagnosed for you?

In May, I had a 10cm ovarian mass removed.... was cancerous but was contained.... I still had severe belly pain after several weeks..... my biopsies were sent to Harvard and Michigan because they were abnormal! I spent a week in the hospital June, July, and Aug with a second surgery that revealed an abscess on the outside of my colon...... treated w abx but as soon as meds stopped, pain returned.... surgeon started prednisone and referred to Cleveland Clinic for GI. Numerous invasive test all for inside of colon came back normal .... saw 2 more GI docs. No help.... I’ve had 8 ct scans since May .... saw new GI 3 weeks ago and she diagnosed from first biopsy... she said the mass had abnormal mesentery cells in it.... it also showed on all CT’s! No one really knows how to treat this from what I can see... we are being seen at Mayo fir Dr Pardi, who does see and treat this! Looking for relief as the pain is excruciating........