Mesenteric Panniculitis or Sclerosing Mesenteritis

I have been recently diagnosed with SM. Are there any foods one should avoid because the small bowel being involved? lectins? fiber? fats?

Hi @jessienalu
I want to say "welcome", but....instead I will give you a quick recap on my experience and hopefully it will help you when you get to your gastro appointment.
Two weeks after suffering a severe back trauma (bad fall on black ice), I came down with pain in my right kidney area that radiated to my right abdominal area. After 3 CTs, a week long hospital stay (trying to get the pain under control) and a surgical biopsy (to rule out lymphoma), I was formally diagnosed with MP. I was put on steroid therapy (Prednisone) for about 6 months. I was on 40 mg. daily for three months and began weaning down 5 mg. weekly until I started suffering from esophageal spasms (side effect of Prednisone) when I was hospitalised for another 10 days and eventually taken off the Prednisone. While Prednisone brings it's gifts (weight gain, sleeplessness, facial hair, moods), it also put me in remission for about 2 and a half years. And I mean complete remission where I was beginning to forget that I even had MP. Unfortunately, after a stressful situation (my father was diagnosed and ended up dying of cancer all within a short 3 month period), I fell out of remission. That was August 2017. I am still off work trying to get this thing under control. At the moment I am on (still!) Prednisone 5 mg. daily, Tamoxifen 20 mg. daily and Azathioprine 150 mg. daily. This 'cocktail' has given me some improvement pain wise however, every medication brings side effects which I am willing to deal with as long as the pain begins to go away. I hope that this helps you. Someone on this site also recommended a book called, "How to be Sick" by Toni Bernhard which comes from a Buddhist point of view. I am not a Buddhist, but found this book extremely helpful while trying to deal with a mind that wants to do so much combined with a body which restricts me from doing those things. I hope my experience can help you.

I have been recently diagnosed with SM. Are there any foods one should avoid because the small bowel being involved? lectins? fiber? fats?

From the bottom of my heart, thank you for taking the time to reply to me.
I am so sorry to hear about your pain.
My gastro appointment got declined because «my symptoms are not newly accured». So now my doctor that has no experience or education about this is going to follow me up. I have not been to work for 5 weeks. In 4 days I’m going back to the doctor and honestly feel like there is no point. How is the doctor going to help me when she knows nothing about this. I just have to push her to force my gastro appointment forward. I have a right to be treated by a specialist when the doctors don’t know what to do!
Thank you so much for writing your experience to me. I will read it and show it to my doctor. It will be so helpfull for me to have it with me, so thank you again. I will also try to get a hold of that book.
I wish you the best and pray for your recovery.

I feel like I'm slowly going crazy... I had a hysterectomy May 9, 2017. By August, I was diagnosed with mesenteric panniculitis that was "accidentally discovered" when I continued having abdominal pain after surgery (my gyno naturally thought it was my ovaries; CT scans done and radiologist found the MP). I was sent to a surgical oncologist that was said to be a "GI guru" and have extensive knowledge in all things "weird and rare". He was rather dismissive about it all as, based on my lab work my gyno had done, there was nothing that made him think there was a concern for cancer. Just brushed it off as an "annoyance issue", that the pain could stay for a month or a year, but he would give me Mobic to help with the inflammation and it should eventually resolve itself (standard treatment for MP is through steroids, but I have anaphylactic reactions to all steroids, and I'm kinda trying to NOT die....). I'm a month in on the Mobic, the flare ups in pain are more frequent with the pain being more and more intense. Nausea has also started to set up and my appetite is waning, at best, as most of the time, the thought of food makes me sick. My PCP and gyno weren't pleased with the consult I had from oncol. One has ordered a repeat CT to be done in a couple of months to monitor progression/improvement. The other has referred me to gastro and hematology. I had a positive ANA and a positive double strand DNA. My spleen has been consistently mildly enlarged on the past few CT's I've had done. Research material on this is limited. I feel like I'm in a snowglobe, being shaken up with all these doctors, throwing around words like "necrosis" and "restricted blood flow" and "cancer" and referral after referral. I'm frustrated and tired of "hurry up and wait".... is there ANYONE that's ever dealt with this that can give me a little insight on it all???

Im 24 years old and been suffering with MP for about 5 years now, Getting diagnosed was such a relief because finally I had an answer. I went from hospital to hospital till I found a Dr that took my pain serious enough and was able to see from the CT scan what others had missed. I had a biopsy done and thats how I was diagnosed as A typical. I was treated w all kinds of different meds because they had never had an A typical patient before. I was put on Prednisone finally after 2 years on steroids, it worked I was able to eat and the constant nausea lessened. My family is always worried which makes it difficult because since stress is such a trigger worrying about them being worried causes episodes all the time. My pain comes about very often after I eat or waking up. Cannabis has helped a little but not as much as I wish. In NYC there arent any Drs I have found who have been of help and my old G.I has left and due to state of health insurance the hospital that was treating me is no longer able to treat me. If any one knows of any good G.I Drs in NY do let me know?.

I feel like I'm slowly going crazy... I had a hysterectomy May 9, 2017. By August, I was diagnosed with mesenteric panniculitis that was "accidentally discovered" when I continued having abdominal pain after surgery (my gyno naturally thought it was my ovaries; CT scans done and radiologist found the MP). I was sent to a surgical oncologist that was said to be a "GI guru" and have extensive knowledge in all things "weird and rare". He was rather dismissive about it all as, based on my lab work my gyno had done, there was nothing that made him think there was a concern for cancer. Just brushed it off as an "annoyance issue", that the pain could stay for a month or a year, but he would give me Mobic to help with the inflammation and it should eventually resolve itself (standard treatment for MP is through steroids, but I have anaphylactic reactions to all steroids, and I'm kinda trying to NOT die....). I'm a month in on the Mobic, the flare ups in pain are more frequent with the pain being more and more intense. Nausea has also started to set up and my appetite is waning, at best, as most of the time, the thought of food makes me sick. My PCP and gyno weren't pleased with the consult I had from oncol. One has ordered a repeat CT to be done in a couple of months to monitor progression/improvement. The other has referred me to gastro and hematology. I had a positive ANA and a positive double strand DNA. My spleen has been consistently mildly enlarged on the past few CT's I've had done. Research material on this is limited. I feel like I'm in a snowglobe, being shaken up with all these doctors, throwing around words like "necrosis" and "restricted blood flow" and "cancer" and referral after referral. I'm frustrated and tired of "hurry up and wait".... is there ANYONE that's ever dealt with this that can give me a little insight on it all???

Im 24 years old and been suffering with MP for about 5 years now, Getting diagnosed was such a relief because finally I had an answer. I went from hospital to hospital till I found a Dr that took my pain serious enough and was able to see from the CT scan what others had missed. I had a biopsy done and thats how I was diagnosed as A typical. I was treated w all kinds of different meds because they had never had an A typical patient before. I was put on Prednisone finally after 2 years on steroids, it worked I was able to eat and the constant nausea lessened. My family is always worried which makes it difficult because since stress is such a trigger worrying about them being worried causes episodes all the time. My pain comes about very often after I eat or waking up. Cannabis has helped a little but not as much as I wish. In NYC there arent any Drs I have found who have been of help and my old G.I has left and due to state of health insurance the hospital that was treating me is no longer able to treat me. If any one knows of any good G.I Drs in NY do let me know?.