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

Please send me the link! My specialist is sending me for another ct to see if the disease has progressed at all. He does not think that I have a twisted mesentery. He said that would have shown up on my previous ct scans. I seem to be relapsing again, unfortunately. After two years, I really want to get off of Prednisone. If I am relapsing, we will have to blast the MP with a higher Prednisone dose. Exactly what I don't want!

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I'm not allowed to post links yet, but the paper is called "A gut feeling you should Never Ignore – in Gastroenterology, but when I search for that it doesn't come up.. a lot of things about intuition 🙂 I searched for reactive foveolar hyperplasia and mesentery and it came up. In this case the has mesentery ischemia that ultimately affected her stomach. Seems to me it's possible for there to be ischemia to the mesentery that may hasn't caused any ischemic changes in another organ yet but causes symptoms. This would need to be diagnosed by a special CT scan of the arteries.

Might be something to ask about if your CT scan doesn't show anything.

Keep me posted!
I need to go back up into the thread to find out what kind of symptoms you are having. I'm new here!

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@colleenyoung

Hi @elle1233,
I see that you wanted to share link to information to share with fellow members. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe. Clearly the links you wanted to post were not spam. Please allow me to post them for you.

– Dr. Calvin Coffey's TED talk https://youtu.be/pP-h001GyP8
– The mesentery: structure, function, and role in disease by J Calvin Coffey and D Peter O'Leary, PhD (2016) https://www.researchgate.net/publication/309040884_The_mesentery_structure_function_and_role_in_disease

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Thanks a lot of doing this, Colleen! I think the people here with mesenteric problems will find the video and article interesting (and even those without! ) . A little message did come up and explain the link posting policy when I tried to post it, it's understandable.

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Anyone get diarrhea as a symptom?

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@gussypup333

Anyone get diarrhea as a symptom?

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You bet ya gussypup333! Everyday many times usually and when I’m in a bad spell -it’s like non stop with back labour pain. 😳-and you!?

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@gussypup333

Anyone get diarrhea as a symptom?

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Yes, especially during a flare up!

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@colleenyoung

Hi @elle1233,
I see that you wanted to share link to information to share with fellow members. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe. Clearly the links you wanted to post were not spam. Please allow me to post them for you.

– Dr. Calvin Coffey's TED talk https://youtu.be/pP-h001GyP8
– The mesentery: structure, function, and role in disease by J Calvin Coffey and D Peter O'Leary, PhD (2016) https://www.researchgate.net/publication/309040884_The_mesentery_structure_function_and_role_in_disease

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oops, that was "for" doing this, in regard to my reply to you! Hey, however is in charge, we need an edit function for the comments! I do, anyway, for all my typos! 🙂

Liked by kimh

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I’m new here. 38 year old male. I was experiencing flank pain and my urologist thought I might have kidney stones, so he ordered a CT. Came back with: There is very mild hazy fat infiltration at the root of the mesentery
with associated scattered subcentimeter nodes; these findings reflect a nonspecific inflammatory process such as Mesenteric panniculitis. Having a follow up CT in 3-6 months.

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Welcome @gussypup333 . Did they give you anything to help with the inflammation? Or for the pain?

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@kimh

Welcome @gussypup333 . Did they give you anything to help with the inflammation? Or for the pain?

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Not yet. The urologist deferred me to my PCP, who is recommending I see a GI, who I am seeing next week.

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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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@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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Thanks so much for the information.

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I hope it is helpful for you!

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Hi – I'm new to this. Was recently diagnosed with mesenteric Panniculitis. I'm just starting to look into things and thought Mayo Clinic would be a wonderful place to start.

My symptoms started with having abdominal pain, upper center. Had an upper GI, no ulcers. Had a CT and found mesentery was inflamed. Had a colonoscopy, no big findings. Had a capsule endoscopy, given diagnosis of Mesenteric Panniculitis. I am now taking Prednisone to help with the inflammation. I'm waiting for my next office visit with Gastro to figure out what next steps are.

Any insight on this diagnosis would be greatly appreciated. Thank you!

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You are doing all the right things.

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