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Mesenteric Panniculitis or Sclerosing Mesenteritis
Digestive Health | Last Active: Dec 4 5:59am | Replies (1518)Comment receiving replies
Hi, I have been fighting this severe abdominal pain that tends to stay near my belly button and then likes to radiate left. Some days its manageable and some days I am literally doubled up waiting to die. I recently got a job at a hospital with awesome benefits so I starting talking to every doctor I could find as I support them all. Various pain management drugs were tried with little effect so I found a GI who scoped me from both ends and found nothing. Then they ordered a CT and wham there it was. I was diagnosed with mesenteric panniculitis but finding what is best to kill the pain is a battle still raging. They started me on 40mg of prednisone which works great but is causing other issues such as fast heart rate and elevated blood pressure not to mention makes me moody as hell. 10 years ago I was diagnosed with prostate cancer at age 38. I already have high blood pressure and I am also a prostate cancer survivor. My doctor is not all that versed on this condition and both the GI docs here at the hospital seem also not to know much about it. My doctor has tried other things but nothing works like the prednisone. I just can't handle the side effects. I wish I could find someone locally who has a good understanding of this disease and could help me find a way to cut out the pain. I was quite overweight and have been on a diet to the point that I have dropped 30 pounds but the pain some days continues to be unbearable. Starting to get frustrated.
Replies to "Hi, I have been fighting this severe abdominal pain that tends to stay near my belly..."
Hi there,
For some people (but definitely not all), they can control symptoms with diet. For me diet has been my savior. I have never taken any steroids or any other meds although I have seen a Messenteric specialist. I do go through periods of pain that are bad and it is only when I cheat. I think I am fortunate to have an autoimmune version of this. I have done two things to place my symptoms in remission:
1. I am on the Paleo autoimmune protocol
2. I take the following gut supplements as recommended by Kris Kresser (here is the link: http://my.chriskresser.com/the-supplement-guide/). I take the list for digestive disorders and the list for autoimmune.
Bullet 2 has changed my life, allowed me to cheat on my diet and basically removed my bloating. Some people go on FODMAP diet, but the Paleo autoimmune protocol works for me. I know that many folks don't have an autoimmune version, but I imagine that these supplements and probiotics would help with general health. I used to have Gerd (acid reflux for 11 years, taking 300mg of zantac daily) and now I don't take a single pill.
Good luck!
Hello @croller68,
Welcome to Connect. I'm so sorry to hear about your diagnosis, and glad that you've joined us on Connect; thanks for sharing your history.
Here is some information from Mayo Clinic, which you might find helpful:
http://mayocl.in/2pCvLAP
I'm tagging @billymac65 @k2aunt @danrofohio @mardellepoff @bertbiz @vdouglas @dennis127 @denia @doron with the hope that they will share their journey and experiences in dealing with mesenteric panniculitis.
@croller68, Mayo Clinic in Minnesota has been recognized as the best Gastroenterology & GI Surgery hospital in the nation for 2016-2017 by U.S. News & World Report; have you considered getting an opinion from there? How are you managing the pain at present?
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Hi croller. Some good info here. We also have a private group with 350 members all across the USA and several other countries with SM and MP. My daughter was diagnosed with severe aggressive SM following a misdiagnosed ruptured several day old appy and 3 back to back abd surgeries, sepsis, and a month inpatient when this all started. SM diagnosed after all that and life changed and has almost taken her life a few times now. She was diagnosed when was 14 and is now 23. We have a wonderful group would love to add you to and network you with others near you and support. Work with every member adding in in networking doc and hospital info within your state and or country for doc who will see and treat SM/mp . Sent you a private msg as well. Hope to hear back from you.