Mesenteric Panniculitis or Sclerosing Mesenteritis
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!!
Interested in more discussions like this? Go to the Digestive Health Support Group.
@aah you are not imposing at all. There was no need to see him in person. By the time I found him, I had experienced 3 ER visits where tons of tests were run (bloodwork, CT scans, etc.), all of which he had access to. He then ordered additional blood tests. He is very comfortable treating me from a distance because there isn't really anything different he would do in person. I trust him implicitly and feel very fortunate he agreed to take my case. I can actually communicate with him via the Mayo patient portal, which is much faster than trying to get an in-person appointment. For instance, after my last CT scan a month ago here in Scottsdale at 6:30pm, I had the results and his report before I even woke up the next day because of the time difference. I am a runner and a month or so ago, as I ramped up my mileage training for a half marathon, I started getting nauseous around mile 3 every single time. He responded the same day with my questions, we adjusted my meds and now I am so much better while running.
Thank you so much for the info! I am trying to get a second opinion – my team of Dr's recommended I try w Mayo, Cleveland Clinic or John' Hopkins. I tried calling Mayo for info on telemed appt but they told me they were not taking new patients. Did your local doctor help you with referral? I am getting to my wits end …. also have ulcerative colitis, severe gastritis and gerd and have altered diet and managed symptoms fairly well for years but this MP has been very challenging. So glad you have the connection you do and help trying to manage MP.
Thank you so much for your info!
@aah I found Dr. Loftus myself. I suggest getting a referral from whatever doc you are seeing for a CT scan and do it at Mayo. You will then have an online patient portal and can send a message to the department at Mayo where Dr. Loftus works and request a consult that way.
Thank you! Wishing you continued success with your treatment 😊
I am a 60 year old male. Started December 14, 2022 with severe heartburn and small stomach cramps on right lower abdomen area. In 14 days, went to severe pain, constant diarrhea and not wanting to eat. Had CT scan, Endoscopy and Colonoscopy on Feb 1 & 2. Diagnosis of SM and No one can tell me what foods will not cause pain. In past month tried Keto, tried all fruit, tried no seed items and now on soft food diet. They have me on 80mg of Omeprazole, And want to put me on Tamifexin. Looking for guidance and direction to make pain subside to manageable level.
Hello everyone, I'm 46 and on January 31st I was diagnosed with MP as well, I think I may of gotten this from a car accident I was in a few years ago, I remember my first reaction was holding my stomach, it felt like my stomach shifted, went to the ER they found nothing, as time went by I stopped drinking, not eating too much , lost a lot of weight, I was 230 and went down to 180 with in 3 years felt cold all the time, constipated, having issues burping, eating and then throwing up because i felt like my food was not digesting properly, now I'm on a leave of absence, lost, scared, confused, depressed, and worried, I was taking steroids that help a lot but now I'm starting to feel bloated again only after a few weeks and I'm having a hard time getting a full burp out, I feel horrible. All I eat is chicken, fish, fruits, and eggs seem to be ok but I might have to cut them out too. Anyone else have symptoms like this? Thank you all, love all of you going through this. We are team of MPs. ❤️
Am I the only one who has pain on the lower left side ?
I use to smoke MJ all the time, it's the only thing that would help me with my back pain, now I have MP and I can't really smoke anymore, the THC helped a lot and also with depression from being injerd, I did try to smoke with MP and I felt happy but bloated from my stomach and had a hard time burping 😔 so now i might try edibles to see how thR helps
Wish you my best 🙏
I am from ontario! Pls let me know if you find out any more info. Apparently nobody around here knows anything about this.
@ray210 and @nancykeenan I was diagnosed just over a year and a half ago. I see an mesentary specialist with Mayo, Dr. Conor Loftus in Rochester, MN. I live in Arizona and get all my tests done at Mayo in Scottsdale. He can then access the records on the patient portal. I recommend finding a specialist since this diagnosis is so rare most doctors are unaware of the best treatment or even the diagnosis. I saw a number of doctors, and had multiple ER visits, before finding my way to Mayo. Most critical things are to ensure you are hydrating appropriately every single day! Also, stress is a huge precipitator to a flare, so seriously decrease your stress levels. I take Miralax every day without fail. I then have 3 medications to take if I feel a flare coming on. I am a runner and find that I start to feel nauseous around mile 2-3, so I have a prescription for Ondansetron ODT which helps significantly. Exercise if you can. The items/foods that I have found to cause issues are dairy, spicy foods, alcohol, sugars and red meat. Good luck!