1. < Digestive Health

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.

kimh | @kimh | Oct 1, 2018

Thank-you @doron for sharing in your success. I had gone to a naturopath and she had prescribed me some digestion (with enzymes) supplements without much success. However, I have not tried grapefruit seed extract, ginger extract or feverfew for pain, so at least I have something new to try! I will also look up the two doctors that you mentioned...

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kimh | @kimh | Oct 1, 2018

This helps a lot! I will discuss everything with my husband tonight! Thank-you. By the way, there was a special on PBS a little over a week ago on the Mayo Clinic and the whole time I was watching it

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2 replies
PCfromFM | @pcfromfm | Oct 1, 2018
In reply to @kimh "This helps a lot! I will discuss everything with my husband tonight! Thank-you. By the way,..." + (show)
@kimh

This helps a lot! I will discuss everything with my husband tonight! Thank-you. By the way, there was a special on PBS a little over a week ago on the Mayo Clinic and the whole time I was watching it

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I have done an elimination diet a number of times and recommend it strongly. I know some think since we are not dealing with intentional issues such as Crohn’s -food should not matter. I believe and know through experience that there are foods-maybe chemicals-that I can not manage. Flarups happen immediately. Stress of any kind, good or not, and not enough rest cause a relapse. I have come off prednesone completely right now and use drugs only intermittently - more to help ward off an episode. I do take B12 and B6. Quality of life is so important - I have found -step by step -taking control with food and life style -I can manage much better. One step at a time!

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kimh | @kimh | Oct 1, 2018
In reply to @kimh "This helps a lot! I will discuss everything with my husband tonight! Thank-you. By the way,..." + (show)
@kimh

This helps a lot! I will discuss everything with my husband tonight! Thank-you. By the way, there was a special on PBS a little over a week ago on the Mayo Clinic and the whole time I was watching it

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I didn't finish the post lol! The whole time I was watching the special, I was wondering why I wasn't already there!

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steve_b | @steve_b | Oct 1, 2018
In reply to @kimh "Hi @steve_b. May I ask what celiac plexus nerve block actually is? For pain, I am..." + (show)
@kimh

Hi @steve_b. May I ask what celiac plexus nerve block actually is? For pain, I am currently on Targin (I'm from Canada, so our medication names may be different than in the States) which is a mild slow release oxycodone (that does not cause constipation) and the typical oxycodone for breakthrough pain. The oxycodone knocks me out and I would like to learn more about celiac plexus nerve block and if it could be an option for me.

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Hi @kimh, You can get a better explanation by googling it but basically they locate a nerve bundle in the middle of your abdomen using a scanner called fluoroscopy or EUS (endoscopic ultrasound). Then they kill the nerves using alcohol injected through a needle. Usually it works for a few months to years depending on nerve regrowth. It's typically used for intractable pain from chronic pancreatitis or pancreatic cancer. I don't know if links work in this forum but here is a case study for MP.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4436925/

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1 reply
aland | @aland | Oct 1, 2018
In reply to @steve_b "Hi @kimh, You can get a better explanation by googling it but basically they locate a..." + (show)
@steve_b

Hi @kimh, You can get a better explanation by googling it but basically they locate a nerve bundle in the middle of your abdomen using a scanner called fluoroscopy or EUS (endoscopic ultrasound). Then they kill the nerves using alcohol injected through a needle. Usually it works for a few months to years depending on nerve regrowth. It's typically used for intractable pain from chronic pancreatitis or pancreatic cancer. I don't know if links work in this forum but here is a case study for MP.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4436925/

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@steve_b I am not ready for that. One mistake...one mm off seems tragic

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kimh | @kimh | Oct 1, 2018

I didn't think about that....but it seems like a wonderful dream to be off the oxys....

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musicflowers4u | @musicflowers4u | Oct 1, 2018
In reply to @pcfromfm "Hi Kimh -I may have missed some of your past posts -forgive me if I’m old..." + (show)
@pcfromfm

Hi Kimh -I may have missed some of your past posts -forgive me if I’m old news. I’m wondering if you have been able to find some triggers or are on a diet of some kind? I’m in Canada and have little to no medical help. I finally have this body fairly manageable -but after many years!

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I avoid nuts, seeds, skins, too much acid, alcohol, fried food, rich food and desserts. I don’t drink soda or regular coffee (only drink acid reduced coffee). Bless you. Hope US doesn’t go the way of Canada’s health care.

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musicflowers4u | @musicflowers4u | Oct 1, 2018
In reply to @kimh "Thanks! And I appreciate that everything can be found indoors! I do know a little something..." + (show)
@kimh

Thanks! And I appreciate that everything can be found indoors! I do know a little something about Minnesota winters lol!!!!

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A great place. Good luck.

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musicflowers4u | @musicflowers4u | Oct 1, 2018
In reply to @johnbishop "I hope you find some answers and help. In case you have to come to Rochester..." + (show)
@johnbishop

I hope you find some answers and help. In case you have to come to Rochester Mayo Clinic Campus here is some info that may help you get around. Nice thing about Rochester in the Winter is you can get to all the buildings without going outside.

Rochester Mayo Clinic Concierge Services
https://www.mayoclinic.org/patient-visitor-guide/minnesota/becoming-a-patient/concierge-travel-services
Mayo Building - Mayo Clinic Patient Video Guide - Minnesota - YouTube

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Thanks John for adding the Mayo info.

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