Mesenteric Panniculitis or Sclerosing Mesenteritis

Hi @stacy72 This symptoms of this disease can be treated to help alleviate your symptoms. There are studies (and colleagues!) that your GI could reach out to for direction. I am taking Prednisone, Tamoxifen, Azathioprine and CBD oil to help shrink the inflammations and encourage remission. For pain, I am taking something called Targin (a very low dose of oxy that is a slow release medication that does not cause constipation) and for breakthrough pain, I am taking oxycodone, but sparingly. I hope this helps you.

Welcome stacy72. I have found over time that eliminating as much stress as possible, getting more rest then most and watching my diet -that I am able to have mostly good days. Keeping positive and feeling as much in control as I can be -makes a huge difference to my feeling good. Research and listen to this group and the one on Facebook, we are all in this together! Welcome!

Are there certain foods i should be avoiding also?

Many others can recommend to you what works best for them. Many have specific diets they follow, most have specific foods they avoid. Over much time and many elimination
diets I feel best /have the smallest amount of pain and “special” effects with no alcohol, no onions or corn in any form, no seafood of any kind, few spices, bland foods, small amounts of beef, pork, poultry, and cheese/yogurt no problem with wheat can’t do any chemicals so no additives etc. Generally I can stay out of hospital with gravol and diet management, tons of rest and a positive attitude!

I have been very lucky in that I am able to control the disease and symptoms with supplements recommended by Dr. Kresser and the Paleo auto immune protocol diet. I cheat but get more strict when symptoms reappear

Has anyone been put on Nortriptyline for pain? My GI put me on it and it was not worth the side effects for me. I'm really feeling like he thinks I have IBS. I have had I s for years and that's not what I am feeling. The pain Is almost constant but tolerable to a point. I have. A follow up appointment this week. I'm just not feeling g like he is listening to me and that he already had his mind made up about my diagnosis when he walked in the door. He said I didnt have MP because I dont have the typical body habits of those who do have MP. Meaning I'm too thin to have it. We will see what happens but I'm not very optimistic about my treatment or lack thereof.

Hi @jamokl246 I'm sad to hear about a rush to diagnosis in your case. Have you had a CT done? When I was initially diagnosed in 2014, I had already had 3 CTs in my abdominal area and to rule out anything more ominous (lymphoma, because the inflammations were growing), I had a surgical biopsy which clearly showed MP. Has this option been given to you? Not sure about MP body habits? When I came out of remission in August 2017, one of the 'tell tale' signs was rapid weight loss. Being 'too' thin, actually makes sense because you have no appetite with this disease. There is always the possibility that you may have more than one thing going on as well, so I wouldn't entirely rule out IBS, but I would expect that you should at least have a CT done, just to be a little more confident in your diagnosis. I hope this helps you at your next appointment and good luck. We have all been there with disbelievers lol!

I almost wish for weight loss with my MP. But I had 2 CT scans, initially looking for kidney stones. First scan was without contrast and the enlarged lymph nodes were clearly visible. Repeated the CT with contrast and the look like Christmas lights. Also a subtle psuedocapsule and increased attenuation at the Mesenteric root. What does all that mean? Little nuclear bombs going off across my lower left abdomen and across my left side into my left middle back. Osteoarthritis showed up nice and clear as well, lower spine, SI joint. Get both of the going and it's a bad day. My primary care is caring but clueless, she put me on a week's dose of Prednisone, I think she googled that in the other room. I had much relief but it wore off after 2 weeks or so. Sent me to GI, had a clean colonoscopy, she said come back in 6 months for another CT, if same or worst she'll do a biopsy. YAY. GI said she doesn't do steroids or painkillers and referred to a pain management clinic, just last week I rounded up all my records for last 2 years, MRI, CTs, x-rays, blood works. Everybody seems clueless or uncaring. I don't think it's diet related, I believe it's more complicated than that into the autoimmune system realm. My neighbor stumped doctors for years with an autoimmune problem, not MP but bizarre pain in neck and arms and inflamed lymph nodes throughout his upper body. Anyway, good luck. God blessed me with a high pain tolerance.

Hi @kimh. Yes I had a CT done when I was in er. Radiologists diagnosed me with MP. Then a re read the next day never mentioned it. I had a 3rd radiologist look and he said he would not have called the mp out on the report. Frustrating! No there has been no mention of biopsy or anything. Just going with the flow. Meanwhile I have pain all the time. I have had ibs for 20 years. This is not a new thing to me and I know what that feels like. This is entirely different. I started with right upper quadrant pain and I still have that. Now for the last 2 days I have had left lower quadrant pain to the point it woke me up several times last night. I'm just frustrated and at a loss. I appreciate your response. I may send my ct to mayo to see if I really have this or not. Lots of back story here too. I grew up in an area where Monsanto had dumped radioactive waste near a creek where I played as a child. Now there are cluster cancers being discovered. Google cold water creek if interested. It's a bit frightening.

Yikes! Well a biopsy would be definitive. I'm not sure if I was born with it, but I have heard that symptoms can present themselves in three different circumstances, which are: underlying condition of lymphoma (not me thankfully), abdominal surgeries (I have had several), or severe back trauma. My symptoms came on two weeks to the day of a horrible fall on black ice. My specialist believes 100% that my symptoms were brought on by the fall. For pain management, I am on CBD oil, Targin (oxybased, mild slow release that does not constipate) and percocet for breakthrough pain. I hope this helps you.