Mesenteric Panniculitis or Sclerosing Mesenteritis

I am currently inpatient at a hospital I got admitted from the emergency room. It has been 10 days now and I have had an EGD, Chest x-ray, CT scan of abdomen and pelvis with contrast, a laparoscopy, and countless amounts of blood tests. The doctors tell me I have something very rare and she has never seen it her entire career. Biopsies were taken during the laparoscopy and I am still waiting on results to see if it is cancerous. I am not being told much so I reviewed some of my procedures to see if I can get answers. I found that the radiologist may think it is sclerosing Mesenteritis Which was found in my CT scan. Every other test has come back unremarkable, the only thing they see is thickening of the Omentum But are unable to find an underlying cause. They also found I have bilateral plural effusion, which they performed thoracentesis to remove the fluid In the right side plural space. It was tested and found negative for malignancy unable to find the cause of why the fluid was there. I decided to go to the emergency room after having excruciating pain in my abdomen for about a month and difficulty breathing which turns out to be from the pleural fluid. The pain in my abdomen started off on my lower left side but has really moved all around. The pain seems to get worse at night and in the morning. I am a 42 year old male with no major medical history besides a ruptured esophagus that has been repaired. I also have peptic ulcer disease and just discovered I also have H. Pylori. Has anyone else been diagnosed with sclerosing Mesenteritis? What where your symptoms? I feel like I am going to leave the hospital with no answers or help because they can’t officially diagnose me.

Can anyone please share how they got diagnosed with this disease and what your medical findings and symptoms were.

Hi @jcdeep,

I can imagine how worried you must be, and I want to thank you for reaching out to the Connect community. Living with a chronic condition can be so difficult and frustrating. Here is some information about Sclerosing mesenteritis care at Mayo Clinic, which I would encourage you to read:
https://www.mayoclinic.org/diseases-conditions/sclerosing-mesenteritis/care-at-mayo-clinic/mac-2035509vdouglas
You may notice that I moved your discussion and combined it with this existing discussion on sclerosing mesenteritis as I thought it would be beneficial for you to be introduced to the many members in this group – I'm tagging @kimh @jaimeworth89 @doron @musicflowers4u @warlick @sjean @pcfromfm @fernandoparce @cconnors @bertbiz @vdouglas who've also been living with MP and who would be happy to answer your questions.
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.

@jcdeep, as you will read, sclerosing mesenteritis is rare, and it's not clear what causes it; has your current healthcare team in the hospital given you an explanation for what's causing the pain? Have they prescribed any pain medications?

I have not been officially diagnosed. I was discharged from 10 day inpatient stay with no answers today. I found this disease by reading my The impression from the radiologist on my CT scan. One doctor that I saw suggested I go to Mayo Clinic because they will better understand and have the ability to diagnose. I was discharged with tramadol and prednisone.

I am a 66 y old woman. With MP. Diagnosed end of 2017 from keyhole examination, after CT scan showed thickening around the bowel Messentry, went on steroids for 4 mths, but due to their effect on my bone density had to come off. Am still on tomoxefen, indefinitely. My symptoms were pain in stomach and cramps. I am not too bad at present, although last month I had a month of bad cramps. I am under a gastrointestinal specialist in Aussi. I get really tired if I do too much bending / gardening etc, so have to pace myself. Some say this condition can just go away....I’m hoping for that,...for you too !

Hi @jcdeep,

Mayo Clinic doctors care for more than 200 people with sclerosing mesenteritis each year, and have a lot of experience diagnosing and treating this rare condition.
Also, Mayo Clinic in Rochester, Minnesota, ranks No. 1 as the best gastroenterology and gastrointestinal (GI) surgery hospital in the U.S. News & World Report Best Hospitals rankings.

If you would like to make an appointment at Mayo Clinic, please call one of our appointment offices. You can also request an appointment online. The contact information for Minnesota, Arizona and Florida can be found here: http://www.mayoclinic.org/appointments

I had a laparoscopy which seems to be the same thing as a keyhole exam. During the procedure they saw the thickening but did not diagnose me. I as well had a CT scan that showed thickening around the bowel Mesentery. My symptoms are cramping in the abdomen as well. Not sure why I couldn’t get a diagnosis! One thing that seems different with me is I have bilateral pleural effusions with unknown cause. Has anyone else had this? Thank you for the feedback!

Have you gone to the Mayo Clinic? I have been diagnosed and am on Prednisone, tamoxifen and oxycodone for pain. I have been out of remission for over a year now and still symptomatic unfortunately. It may be time to look at some immunosuppressant medications....

Hi JC, I have been tentatively diagnosed with MP from an MRI. I get an MRI every 2 years for recurrence of IPMNs in my pancreas. I too have more pain at night and especially the morning. Being horizontal is my biggest provocateur. Mine was probably caused by numerous abdominal surgeries. Unfortunately no one biopsied my panniculitis during the surgeries, they just wrote "dense fibrous adhesions". Now no one is willing to go back in to get a biopsy. I sense they think it's all in my head. I've been on prednisone for a week without any improvement. The NSAIDs helped but my stomach/bowels can not tolerate them. Acetaminophen helps. Pain meds are very hard to obtain in my state. I can't eat large or hard to digest meals. Apparently biopsy is the gold standard for diagnosis. Did you get your biopsy report?

@steve_b