Mesenteric Panniculitis or Sclerosing Mesenteritis

Posted by BillyMac65 @billymac65, Dec 6, 2012

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!!

Bill

Interested in more discussions like this? Go to the Digestive Health Support Group.

I had an adrenalectomy due to a benign growth september 2018, I presented with stabbing like pains in the front left flank, ct scan showed the tumour. I though aha! My pain has a reason. Off I trotted to get it removed, success. But,one year on, the pain is STILL there, my doctor said it’s healing pain.. I called it BS, so demanded another CT scan, Mesenteric Panniculitis diagnosis. I WAS RIGHT, something WAS wrong!. Referred back to surgeon, now on Category 2 wait list, all he needs to do is prescribe me the correct meds so I can breathe comfortably and not feel like I have to constantly stretch my left side out... in my mind, I think it helps, but really, nothing does, no amount of stretching this way or that! but, I know, there’s procedures I must jump through hoops..... so, for now, I take whatever pain relief I can find. CBD oil, but not seeing a change, but its only been a few weeks.... hurry ups dr! Im in australia.

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@kimh

That's good to know. I will let you know what I am on and leave it to your research skills lol. For the inflammation: Prednisone 5 mg. (I started out at 40 mg.), Tamoxifen 20 mg and Azathioprine 200 mg. (I have to get my blood tested because of this drug, I believe). For pain: Targin 5 mg and for breakthrough pain: Oxycodone. I have huge problems with sleep (the main suspect is the Prednisone), so I am also on a drop (0.2 mg) of THC before going to bed at night. I hope this helps!

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Prednisone, its a sleep killer, take it as soon as you wake, that is if you get to sleep at all. I find it makes you extremely productive.

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@ritaz1964

I had an adrenalectomy due to a benign growth september 2018, I presented with stabbing like pains in the front left flank, ct scan showed the tumour. I though aha! My pain has a reason. Off I trotted to get it removed, success. But,one year on, the pain is STILL there, my doctor said it’s healing pain.. I called it BS, so demanded another CT scan, Mesenteric Panniculitis diagnosis. I WAS RIGHT, something WAS wrong!. Referred back to surgeon, now on Category 2 wait list, all he needs to do is prescribe me the correct meds so I can breathe comfortably and not feel like I have to constantly stretch my left side out... in my mind, I think it helps, but really, nothing does, no amount of stretching this way or that! but, I know, there’s procedures I must jump through hoops..... so, for now, I take whatever pain relief I can find. CBD oil, but not seeing a change, but its only been a few weeks.... hurry ups dr! Im in australia.

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Edited to add: previous abdo surgeries- ceasarean x 2, 2001 & 2007, gastric sleeve (2015). This pain started July 2018 and hasn’t left!

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I was diagnosed two days ago. I was in a great deal of pain on my left side. The ER took a CT and diagnosed me then with MP. I have basically have had nothing but broth and some rice for the past two days. They put me on Meloxicam 15 mg. I need to follow up with my physician. What other foods do you think are ok for me until then? I seem to be having a lot of gas with this too. Is that normal?

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@charread

I was diagnosed two days ago. I was in a great deal of pain on my left side. The ER took a CT and diagnosed me then with MP. I have basically have had nothing but broth and some rice for the past two days. They put me on Meloxicam 15 mg. I need to follow up with my physician. What other foods do you think are ok for me until then? I seem to be having a lot of gas with this too. Is that normal?

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I have IBS, so gas is the norm.... meloxicam works fast. I used it for my tennis elbow pain... but if MP causes gas, Ive got it in spades!

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@ritaz1964

Prednisone, its a sleep killer, take it as soon as you wake, that is if you get to sleep at all. I find it makes you extremely productive.

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THC oil helps with the sleeplessness!

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I am now healing from major surgery. They tried to take a biopsy by lapro but couldn’t find it. Opened me up to find the mass and check for other underlying conditions. Diverticulitis was found. Nothing else but the small mass. If this becomes inflamed what am I looking at for symptoms? Mine was found by a CT Scan. I understand the experts are at Mayo. PS I went in because of IBS pain on my left side but the mass is on the right. My pain is a 10 on the 1-10 scale.

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@ritaz1964

I have IBS, so gas is the norm.... meloxicam works fast. I used it for my tennis elbow pain... but if MP causes gas, Ive got it in spades!

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Have you looked into changes in your diet? I went to gluten free and feel so much better. No gas.

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@jimmymac

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.

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My daughter has had similar GI problems for years. She is still undiagnosed. I started going on these groups to do research and get info. When she was a teen she had lymphatic malformations which they surgically removed. There was inflammation in mesentery at the time. So they found it, but they did not diagnose her properly and had no idea what the real problem was. They thought the surgery would cure her and 10 years later she still has pain and horrible GI problems. We are at a loss just finding a doctor to diagnose her properly. I am pretty sure she has mesenteric panniculitis since what she had in her teen years is tied in with this type of disorder. Now to hear that even if we can get her diagnosed there really isn't treatment is very frustrating. The healthcare plan she has limits her ability to find a quality doctor who could diagnose her, much less treat her. They too told her to go to a psychiatrist and wanted to put her on an antidepressant. I feel for you and I hope you are able to find help.

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@ghennel

My daughter has had similar GI problems for years. She is still undiagnosed. I started going on these groups to do research and get info. When she was a teen she had lymphatic malformations which they surgically removed. There was inflammation in mesentery at the time. So they found it, but they did not diagnose her properly and had no idea what the real problem was. They thought the surgery would cure her and 10 years later she still has pain and horrible GI problems. We are at a loss just finding a doctor to diagnose her properly. I am pretty sure she has mesenteric panniculitis since what she had in her teen years is tied in with this type of disorder. Now to hear that even if we can get her diagnosed there really isn't treatment is very frustrating. The healthcare plan she has limits her ability to find a quality doctor who could diagnose her, much less treat her. They too told her to go to a psychiatrist and wanted to put her on an antidepressant. I feel for you and I hope you are able to find help.

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Welcome @ghennel, many of us have had similar experiences. But we -together-have been able to aid each other with important foods/diets to try and medicines that help. Mayo clinic has been a great help to others who have been able to take advantage of it. Ask lots of questions on the site, share your experiences and those of your daughter. Many choices help, cut back on all the stress you can, change your life to get more rest -as much as you can - and try some other suggestions on diet and medications. Best of luck -stick with us!❤️

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