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 group.

How does one find the underlying cause of misty mesentery at the mesenteric root secondary to mesenteric panniculitis? MRI and CT scan picked this up and I'm not sure what kind of specialist would be able to help me.

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@dwholey

How does one find the underlying cause of misty mesentery at the mesenteric root secondary to mesenteric panniculitis? MRI and CT scan picked this up and I'm not sure what kind of specialist would be able to help me.

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@dwholey – you need to see a mesentery specialist because most other doctors have never even heard of MP. Mayo has 3 of those specialists, I believe. 2 in Rochester, MN and one in Florida, last time I checked. I also have MP. You can do tests at your local Mayo and the specialists can do Teledoc appts with you.

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@colleenyoung

Hi @msvivian,
Welcome to Connect, and especially to this mesenteric panniculitis group. I moved your post to this discussion thread to bring you into the conversation.

Were you only recently diagnosed with mesenteric panniculitis?

Colleen
Connect Community Director

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Yes I was recently diagnosed with MP and dealing with nausea and pain- hard to eat.
Have an appointment we a gastroenterologist on Monday. This is stressful

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@lobell2

Yes I was recently diagnosed with MP and dealing with nausea and pain- hard to eat.
Have an appointment we a gastroenterologist on Monday. This is stressful

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@lobell2 I found that most gastros have no idea what MP is. I initially saw a gastro and she, as well as her practice partners, had no idea what to do. I then went to the Mayo system and found an mesentery specialist. I was diagnosed over a year ago and with the help of my specialist I have very few symptoms, but I am very careful every day what I heat, I exercise, hydrate a lot, get lots of sleep, destress your life (this is huge!), take Miralax daily and if that doesn't work I have Constulose. My other meds are Oxycodone if/when the pain is unbearable (took twice in the last year), as well as Dicyclomine and Ondansetron if I feel symptoms coming on. I hope you find someone who can help.

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@jessica2binformed

Hello there,
I am new on this site. I am looking for HELP!!! I am 54 years old and have had upper right abdominal pain now for years and years. I had many tests, scans, etc… over the years. (not to mention having seen different specialty doctors). Around 14 years ago I had my gall bladder removed due to it being "non-functional". A partial hysterectomy followed soon afterwards. Still, I've struggled over the years with occasional flareups of severe pain that nothing seems to help. It has been debilitating at times. During my latest episode of pain, my husband came home to find me screaming in pain not able to move. It was horrible. Two years ago my gastro doctor told me I have celiac disease (along with a prior diagnosis of GERD, and IBS) I also have pretty bad allergies and food intolerances, specially to plants (mostly raw) The allergist called my condition "oral allergy syndrome". I'm still trying to figure out what to do with that diagnosis. Over the past two years I've been on a gluten free diet and have done pretty well with the bloating issue. However, I am still having 2 or 3 episodes a year of severe pain that lasts for usually a month and with it comes bloating and constipation. I went to the ER last September due to severe episode of pain and constipation. Tests showed that I have Mesenteric Panniculitis. The gastro doctor and the ER doctor don't really know what to do about the diagnosis. I've been on steroids, antibiotics, and meds for abdominal cramping. Nothing works. I'm currently in pain and taking Ibuprofen, etc… for the pain. I'm getting so very tired of this stuff happening. I am a very active mom who likes to build, hike, hunt for arrow heads, etc. (also ADHD, ofcourse) My daughter and I have a camping trip next weekend where we will be hiking in the mountains. I hope to God I'm not feeling like I do now. I describe the usual pain as what it feels like to go swimming right after eating a huge meal. You know that hard stabbing cramping feeling? That is the constant pain i have and then certain movements trigger the feeling of being stabbed in the gut. I tend to breathe shallow because it hurts to breathe in deeply. I looked up info about Mesenteric Panniculitis and realized how rare it is. I hope to connect with anybody who can give me advice or reassurance. I'd really appreciate any feedback. Thanks! Jessica McRee Grabert

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Wow, we have the same very similar story!!!!! Did you have bloating? And it's very painful.

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@lobell2

Yes I was recently diagnosed with MP and dealing with nausea and pain- hard to eat.
Have an appointment we a gastroenterologist on Monday. This is stressful

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@lobell2, how did your appointment go last week?

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@colleenyoung

@lobell2, how did your appointment go last week?

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The GI doctor listened and took notes. He doesn't want to say MP as the CT showed. Wants to rule out other things..so have to have colonoscopy and another test – but can't get in until June 22.
Just dealing and trying to push through. He said if the pain gets worse go to ER.. I laughed and said I am here trying to get help- what could an ER doctor do? Well if you need pain meds..I told him I wasn't seeking pain medication.. I want answers.
I know my comments are one sided -how I feel and understood the appointment.
I guess I have to deal with it and wait. The pain is now a dull ache in the side and I have been eating more.

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Having Mesenteric Panniculitis is so horrible, especially when you can’t find a Dr. to help. I even got in touch with the Mayo in Jacksonville and can’t get an appointment for 6 months b/c they are booked and won’t take any more appointments. I have called several gastric Dr’s and they don’t treat mp or even know what it is, I feel like I have no resources to help me. Yet, I continue to suffer daily. My primary gave me antibiotics and cortisteroids and it has helped some but symptoms never really go away. I’ve requested a MRI to make sure that I don’t have other underlying conditions. Waiting on insurance approval. I’m so glad that I have this site to see how others cope. I need all the info I can get.
LisaW.

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@markmor456

Been recently diagnose with meseteric panniculitis 2 months ago been dealing with it since Oct 2013.looking for input,
Thanks

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Hi everyone. I went Q care with severe abdominal pain. CT was ordered. Doctor called me today with mesenteric panniculitis. I'm glad there was a reason for the pain. I'm not sure I like having this.

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Hi @gallosusie1, welcome.
I moved your message to this long existing discussion about mesenteric panniculitis
– Mesenteric Panniculitis or Sclerosing Mesenteritis https://connect.mayoclinic.org/discussion/mesenteric-panniculitis-or-schlerosing-mesentertis-auto-immune-around-small-intestine/

I did this so you can easily connect with other members like @lisacw @lobell2 @lauraharris111 @erincorn @dwholey @kimh @floridamike and many more.

@gallosusie1, this is all new to you. Do you have any questions that you'd like to ask fellow MP-ers?

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Hello I was diagnosed with Mesenteric Panniculitis in 2015 . When I was girst diagnosed they used metrondiazole, bentyl, Naproxen. I also went on a diet avoiding sugar, counting carbs and eating alot of vegetables, whole grains. But now I am trying a gluten Free diet as well. I do flare up about twice a year. About march 2022 I flared up took steroids for the first time they helped but unfortunately they ran my system down and I caught COVID. However I also do not have a spleen. Post Covid I had another flare up I figured I would try a home opathic approach using Turmeric and olive leaf extract with Vitamon D and vitamin C. Some relief but not enough. Today I had to call my Gastro and they are now going to try xifaxan. I do feel that diet does help. High fiber and foods that fight inflammation works to.

I am curious though due to multiple adhesions from several surgeries and no spleen would love to see if anyone else has the same issue and what works for them. My next try is a referral to the Mayo Clinic.
We do have a Hospital here in Chapel Hill NC that deals specifically with rare diseases.
Im glad I found this site.

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