Mesenteric Panniculitis and Sclerosing Mesenteritis: Let's connect

I am 39 years old. Normally fatty liver doesn’t come this early in life. I’ve had trouble eating dairy and other foods the past ten years so I basically avoided dairy but now it’s not helping. Now with this Mesenteric panniculitis I am definitely having a hard time finding a solution on how to get my body back to normal.

Mesenteric panniculitis is a rare inflammatory condition affecting the fatty tissue of the mesentery in the abdomen. While its exact cause remains unclear, several potential contributing factors have been identified:

🧬 Possible Causes of Mesenteric Panniculitis
Idiopathic Inflammation

In many cases, the inflammation appears spontaneously without a known trigger.

Autoimmune Disorders

The immune system may mistakenly attack mesenteric tissue, leading to chronic inflammation.

Abdominal Surgery or Trauma

Prior surgeries or injuries to the abdomen have been linked to the development of this condition.

Infections

Chronic infections such as tuberculosis, typhoid fever, cholera, syphilis, and Whipple’s disease have been associated with mesenteric panniculitis.

Cancer Associations

Some studies suggest a link between mesenteric panniculitis and cancers like kidney or prostate cancer. About 28% of patients with the condition had a history of these cancers.

Medications and Vascular Issues

Certain medications and vascular problems may also contribute, though evidence is limited.

🧠 Disease Progression
Mesenteric panniculitis can evolve through stages:

Mesenteric Lipodystrophy – Fat tissue is replaced by immune cells.

Mesenteric Panniculitis – Intense inflammation occurs.

Retractile Mesenteritis – Scar tissue forms, potentially causing complications.

Infections
Previous infections might trigger mesenteric panniculitis. Some research has associated mesenteric panniculitis with a history of chronic infections like:

Tuberculosis.
Typhoid fever.
Cholera.
Syphilis.
Whipple’s disease.
Cancer
Mesenteric panniculitis sometimes occurs in people who've been previously treated for cancer. It also sometimes occurs in people with known or soon-to-be-diagnosed cancer outside the mesentery. Previous or current cancer has been reported in up to 30% of cases. Types of cancer associated with mesenteric panniculitis include:

Lymphoma.
Carcinoid tumors.
Colon cancer.
Kidney cancer.
Prostate cancer.

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Hello,
I have been dealing with diverticulitis flares for a year and a half. I have been in and out of the ER 4 times, as well as have been seen by an internist (Colonoscopy and Endoscopy done). This last 'flare' in August felt different and ended up in the ER again with another CT scan. The radiologist shared I have 'misty mesenteric panniculitius" and that he could see it on a CT scan I had done several months prior, as well as on the the new CT scan, He suggested I see an internist (my first internist never mentioned anything about MP). My GP sent me to a different internist and I am waiting on getting a second visit once she has all my medical records over the past 1 1/2 years. As of two days ago I am having SEVERE abdominal cramping that has gone on for almost 24 hours. Today I'm more 'sore' and tender and not cramping as much. Trying to stay out of the ER and so I took some pain meds I had on had, which helped take the edge off and helped me to sleep. This is exhausting. I keep reading MP is 'rare' and can be complicated. I would like to year from others who have been diagnosed with this and what their journey has been. So far all my blood work doesn't suggest lymphomas or sjorgrens (autoimmune) which is associated with MP. I just can't keep living like this.

@aksanralynn - hello, and welcome to Mayo Clinic Connect. So that you can easily chat with others who are talking about mesenteric panniculitis (MP), I moved your post here to this existing discussion:

- Mesenteric Panniculitis and Sclerosing Mesenteritis: Let's connect https://connect.mayoclinic.org/discussion/mesenteric-panniculitis-or-schlerosing-mesentertis-auto-immune-around-small-intestine/

Hoping you can meet members here such as @peterose @bluecars2 @sdrussett1 @spankytwo2 and others, who can share a bit of their journeys or that of a loved one with MP. I'd also like to introduce you to @jlharsh.

Sorry to hear about the severe cramping. I'm glad you could at least figure out a way to get some sleep. When you say you just can't keep living like this, are you referring to the level of abdominal pain? Any other symptoms bothering you?

@lisalucier
Thank you for moving my post to the correct platform. I didn't find anything when I did my initial search. I appreciate the connections to other members dealing with MP. The cramping and very heavy feeling in my abdomen (difficult to sit or stand up straight) that takes days to go away and comes and goes every few weeks/months, has been tiring. I also haven't been confident in my regular GP and the first gastroenterologist I saw in January. So much has been missed. But I am working with a the GI specialist who is still gathering all my records before we move forward with a plan. I see her again on the 11th. In the meantime, I had a 'flare' of pain starting yesterday afternoon and have been in bed with a moist heating pad....really trying to not go to the ER.

Thank you, @lisalucier for tagging me. Hi @aksandralynn, it is nice to meet you. I am sorry you are having so much discomfort and this is affecting your day-to-day.

I have been told I have diverticulitis but I really do not understand the root of what is happening with me yet. I am not very much help for you in that regard. I do understand how miserable you must be at times. I have had to blend my food or even go a day or two without eating just keep my pain tolerable. Getting to my current care team has been what has helped me but it has not been an easy fix. I relate to your comment that you can’t keep living like this. You can do this!

You mentioned how infrequent mesenteric panniculitis, also called clerosing mesenteritis occurs. You may have reviewed information Mayo Clinic provides about it already, but if not I am providing a link. I particularly want to point out:
- Mayo Clinic doctors care for more than 300 people with sclerosing mesenteritis each year.
- Mayo Clinic doctors and scientists are studying new ways to diagnose and treat sclerosing mesenteritis.
- There is a list of publications about sclerosing mesenteritis by Mayo Clinic doctors that may help your doctors. Scroll down to the Reearch section of the Doctors and Depatments page to find a link to this list.
https://www.mayoclinic.org/diseases-conditions/sclerosing-mesenteritis/symptoms-causes/syc-20355087
You mention going to the ER. How do they assess and treat you when you are there? How are you sleeping?

@jlharsh
Hello and thank you for reaching out!! I am sad to hear you are experiencing the same! It is not fun. I had a bout of diverticulitis about 12 years ago. Took antibiotics and never had it return, until July of last year.
Since then it has been non stop in and out of the ER with "diverticulitis flares". We even cut a camping vacation short and considered postponing my dream trip to Greece (we did go 🙂 ) I've learned to stop going to the ER and switch to a liquid/clear diet for a few days and then slowly add in pureed/soft foods until things settle and feel better. I saw a GI Specialist (had an endoscopy and colonoscopy - all good except for a hiatle hernia). Tons of blood work and labs. I was told I had a slight fatty liver. Also worked with a nutritionist in his office monthly. The GI doctor told me to not take any NSAIDS and 'lose weight". I am a size 12/14. Though my tummy at times looks like I am 9 months pregnant. The nutritionist was very happy with my eating (low FODMAP) as well as a bit of Metiterrean style eating (I am greek, so I have always eaten in that style), I have been on two rounds of Bactrim when the flares show as '"complicated". In August I wasn't feeling well (middle and right side of stomach hurting as well as my middle back) and worried maybe it was my appendix or possibly a kidney stone, so I went in to the ER for imaging. I was told my diver wasn't complicated, but they gave me antibiotics just in case. But the ER doctor commented I needed to see my GP because the 'Misty Mesenteric Panniculitis' showed on the CT and hadn't gotten 'any worse or any better' since the CT scan I had 8 months prior. I had never been told about MP until that day. So I visited my GP and her comment was, this is very rare and referred me to a new GI specialist who I have met with once and is waiting on all my records to be sent to her for review. My GP also had me go for a MRI.
I really try not to go to the ER. I usually end up with an IV of toradol, a CT scan, maybe antibiotics or not and 'follow up with my GP'. But yesterday, and the day before I couldn't walk upright or sit, the pain had me moaning. Today pain is around a 7 down from a 10. I just drink bone broth, tea, water. I did manage to eat a scrambled egg this morning. I am so hungry. The only reason I slept last night was I had some leftover pain meds, which I took. I helped take the edge off.
I will review what you sent, thank you. I have done quite a bit of reading and also reached out to a MP Facebook group. I may seek outside medical care depending on what this new GI specialist says. My son lives in Scottsdale AZ and I know there are Mayo Clinic's there, so I have considered care there.
My labs don't show autoimmune (Sjogrens) or cancer, though I read sometimes they actually have to biopsy lymph nodes in the area affected. I do have a higher A1C (was on metformin which feels like poison in my body, so I won't take it any longer. I am at a loss and so tired of not knowing what is causing this. I feel like I just need to stop eating.
Thank you again for reaching out. I believe everyone's experiences help when trying to figure out something not well known.

@aksandralynn, I know taking pain meds is not a solution but I am glad they have given you some relief. You are going through a lot. Thank you for explaining more about your situation. You are doing so many positive things to help yourself get through this and it doesn’t feel like it, but you are making progress.

Some of what you describe is familiar to me, though I need to correct. I was not told I have diverticulitis, rather diverticulosis so definately not as difficult. I found myself in a systemic circulation crisis at home and landed at Mayo, Rochester a few years ago. I was told they knew what was happening but did not know what to do about it. They wanted to help me figure it out and their approach would be to first, protect my heart then take one symptom at a time. It would be a marathon, and it has been. Before getting there I tried several things on my own, one being a visceral massage. It was the lightest pressure you can imagine and resulted in an extreme amount of pain in my abdomen. Like you, my labs haven’t shown autoimmune or cancer. Liver has also been a concern. One thing that goes through my head is something the surgeon who did my hysterectomy a decade ago said to me following…..she mentioned it was a mess and was surprised I ever had children. I continue to put one foot in front of the other, do the next best thing in front of me. With a good care team I am making incremental progress. I hope the same for you.

You mention Mayo Clinic in AZ. That just may be a wonderful option for you. It sounds like you would benefit from their integrative approach and familiarity with uncommon, rare situations.
Here is a link to pursue asking questions and/or making an appointment at Mayo Clinic: http://mayocl.in/1mtmR63

I am interested to hear how you are doing as you continue. You can have your doctor submit a referral to Mayo or you could simply contact them yourself. Do you have a feel for which would work best for you? When is your next scheduled appointment?