Mesenteric Panniculitis or Sclerosing Mesenteritis

My husband was diagnosed with mesenteric Panniculitis in 2010 after many decades of visits to GI doctors and hospitals. He had a small bowel obstruction that showed severe inflammation of his mesestery layer. It was first treated with prednisone and liquid diet. The mesentery layer was greatly reduced with 6 months of steady treatment. But since then he has had two more episodes of small bowel obstructions. We are unaware of what triggers such events but we do know that hard vigorous labor aggravates the condition, causung pain, discomfort, insomnia, vision problems, acid indigestion ( now treated with omeprazole. )
Early diagnosis could find nothing and patient was told to seek help from psychiatrist and not a gastric doctor. Decades later MRI results showed increased inflammation in mesentery and diagnosis is mesentery panniculitis. With very little medical information of this very rare condition we are at a loss to finding doctors to treat this disease. Is there a doctor somewhere in New York who can help us.

Hello @jacques101, You are not alone, even in Canada. I'm from Ontario and have been suffering from this disease since March 2014. I was diagnosed through CT as well as surgical biopsy. Thankfully, there was no underlying condition. This is a result of a severe fall on black ice. I was in remission for about two years (almost forgot that I had the disease!) due to steroid therapy and eliminating stress (I took a year off). After returning back to work for a year, I fell out of remission, so I have learned that stress is a major factor for me. Also, weather systems affect my pain level as well. I have been battling to return back to my old life (probably not a realistic goal!) and I can share with you some of the meds that I am currently on. I'm taking 200 mg. of azathioprine, 20 mg. tamoxifen and am currently weaning down on Prednisone (I have been on since August 2017!) and am on 4 mg. daily. Also (lucky to be in Canada...), I am also on CBD oil to try to help with inflammation. Also, I have found taking daily saunas (is this in my mind???) to be helpful. I haven't experienced 'heartbeats' in my stomach, but my pain seems to be on my right side of my abdomen and feels kind of like someone sticking their hand and twisting my guts! If you are experiencing nausea, perhaps your doctor might consider Ondansetron. It has been helpful for me. So, as you can see, we are still active on this site lol! I hope this post is helpful!

Hello Kelsey, I have been diagnosed with sclerosing mesentary panniculitis. ive had ct scans and and mri. I live in florida and my GI doc has refferred me to Mayo in jacksonville. Do you have a contact there i can get in touch with? Thank you. I failed prednisone and budesonide due to side effects

Hi there, fellow Floridian. I'm in Orlando and have just been referred to Mayo, as well. Working with insurance to get the specifics worked out. I'm glad your GI was honest, and wise enough to refer you there, too. Hoping you get the help and relief you need. If you've already been, and don't mind sharing info, can you let me know how it went, please? I'm truly looking forward to some relief from this, but am understandably anxious about the process. Good luck and thanks.

@hopeful33250 o.k.here it goes See what you think. Why Connect. We have a variety of pain,back,stomach ,nerve but we fight to keep us sane ,also those ugly beasties ,anxiety,panic,depression, being overwhelmed,those beasties,push them down into the ground .
It's through Connect that we do CONNECT. We all care for each other ,share with each other and it starts by opening up
And emptying our cup.
So be grateful everyday for your blessings everyday ,if you just want to talk
that's o.k.

Hi I'm suffering with immense side Pain..Terrible Burning..Like someone is strangeling my mid section more to right back.Are these the symptoms anyone is having?

Oh, Robin, bless your heart. I'm right there with you. In fact, you described the pain perfectly. I was saying it was like an unbelievably painful hug. Or comparing it to back labor. Anyway you describe it, it's legitimately, the worst pain I've ever experienced (and I've had my share). Mine has been going on for 6 weeks now and I've become used to some of it, but there are times it takes me to tears. I actually am currently sporting a black eye from falling after the pain caught me. I was trying to stand when the pain took me to me knees and I briefly fainted, and down I went (I've fabricated a much more entertaining story involving ninjas and a top secret mission). I so hope you get good medical help and find some relief.

Hi @robinbeth6 , Have you had a CT scan? Many have been diagnosed that way. I also had a surgical biopsy done. I don't remember blood work being used to diagnose MP. Maybe your doctor is trying to rule out other things?