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

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jimbodc | @jimbodc | Dec 17, 2020
In reply to @constancelee "I’m sorry about your hives. They have something to do with meds or diet. Something is..." + (show)
@constancelee

I’m sorry about your hives. They have something to do with meds or diet. Something is toxic to you. It is probably not SM but rather some one or a combination of treatments.

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Thanks constancelee, only change is this diagnosis, no change in meds or foods and Docs haven't put me on anything for this diagnosis until my biopsy is complete. Happens to me on days when I feel the worst.

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mitsy2020 | @mitsy2020 | Dec 18, 2020
In reply to @beckymel "For me any minor improvement came when I ate smaller amounts more often, most of the..." + (show)
@beckymel

For me any minor improvement came when I ate smaller amounts more often, most of the foods I was told to avoid are foods that I rarely eat anyway (fried, spicy, acidic, etc). I tend to feel very full much quicker anyway, but because of the bloating I am not losing any weight. My stress is coming from waiting for the next round of appointments since here you have to wait two months just to see the specialist. You would think if you had something as rare as MP they would want to see you quicker!

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Good luck with test etc- My husband only got diagnosed by going to Mayo- now Mayo is working with our physician- Thank you for suggestions- We’ll try a food diary

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mitsy2020 | @mitsy2020 | Dec 18, 2020
In reply to @pcfromfm "Morning Mitsy2020. I have done the elimination diet a number of times. It sure made a..." + (show)
@pcfromfm

Morning Mitsy2020. I have done the elimination diet a number of times. It sure made a difference. I started with boiled white rice and bits of boiled white chicken meat. Adding only one good item at a time for 3 days to see if I am still good. It’s a long process but worth it. I cannot eat any form of onion or corn, tea or mixtures with many ingredients. I can’t do any strong spices, alcohol, mustard, any seafood. I can only manage small meals, I don’t do convenience foods because there too many chemicals that seem to bother me. It becomes a way of life and easier than it seems. I eat old fashioned food. Most important is to eliminate stress. I was a teacher -always the “crazy” kids and adults -prison, reform school, psychiatric hospitals. So yes -stress made a huge difference. State of mind, good active coping skills important. Stay positive. Eliminate as much stress as you can. But getting lots of extra rest essential. Have you husband find a new way to rest, relax and recoup. We all seem to vary with what works except this it seems. Hugs and good luck on your journey!!

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Thank you for your help- your bloating & breathing issues are exactly my husband’s symptoms- It comforting to know there are others out there to talk to- After the Holidays we are starting a food log to pin point what makes him worse- he’s retired but has a very “High Stressed” personality so working now on slowing him down !! Thanks again , Merry Christmas to all of you out there- & a HEALTHIER Happy new year !

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mitsy2020 | @mitsy2020 | Dec 29, 2020
In reply to @pcfromfm "Morning Mitsy2020. I have done the elimination diet a number of times. It sure made a..." + (show)
@pcfromfm

Morning Mitsy2020. I have done the elimination diet a number of times. It sure made a difference. I started with boiled white rice and bits of boiled white chicken meat. Adding only one good item at a time for 3 days to see if I am still good. It’s a long process but worth it. I cannot eat any form of onion or corn, tea or mixtures with many ingredients. I can’t do any strong spices, alcohol, mustard, any seafood. I can only manage small meals, I don’t do convenience foods because there too many chemicals that seem to bother me. It becomes a way of life and easier than it seems. I eat old fashioned food. Most important is to eliminate stress. I was a teacher -always the “crazy” kids and adults -prison, reform school, psychiatric hospitals. So yes -stress made a huge difference. State of mind, good active coping skills important. Stay positive. Eliminate as much stress as you can. But getting lots of extra rest essential. Have you husband find a new way to rest, relax and recoup. We all seem to vary with what works except this it seems. Hugs and good luck on your journey!!

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Curious ? Are any of you on meds? If so
do they help
& how long did it take to start seeing improvement? It’s been 3 weeks & he’s maybe 10 % better

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donnacarp | @donnacarp | Dec 29, 2020

I've never heard of mesenteric Panniculitis. I am going to google it up

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nancykeenan | @nancykeenan | Dec 29, 2020

Hi there I never heard if it either. I had a CAT scan and that is what the found. I am from Ontario and my physician really didn’t know much about it. He doesn’t even remember hearing about it in medical school, which was a few years ago fir him...He has never treated anyone with it. I have a telephone interview with a gastroenterologist jan 21 and should know more. I was having a very low pain in my stomach every morning between 3 and 5 am. When I had my first bowel movement it was gone and didn’t come back until next morning! Weird! This has been going on atleast since January 2020.....I have mild diverticulosis....haven’t really found any food that bothers it. Will post after my appointment January 21, 2021. Happy new year! Couldn’t be any worse than 2020! Be safe. We are in lockdown right now until January 14, 2021

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kimh | @kimh | Dec 29, 2020

Good luck with your appointment! I'm also from Ontario. I can tell that you are from the north, since we in the south are in lock down til Jan. 28! If your GI decides to put you on medication, these are the ones that I am on currently. Prednisone (started at 40 mg. but am down to 15 mg now), Tamoxifen, Azathioprine, and Methotrexate. Also, I try to stay away from big meals, spicy foods and take out stuff! And on a weird note, I avoid sleeping on my right side, since that seems to bother me and wake me in the night. I hope this info is helpful for you and good luck!

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nancykeenan | @nancykeenan | Dec 29, 2020

I screwed up, I am in southern too, Oshawa, and so lockdown I thought was jan 23....any way, I also find same thing sleeping on my right side. What were your symptoms? Eating late maybe makes it worse by waking up earlier with this discomfort. Nobody ever really mentions their symptoms....if you could tell me yours that would be great. I will, for sure, compare what he decides to do for meds if any....I will also post my results from my interview...

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kimh | @kimh | Dec 29, 2020

Symptoms are: pain on my right side, nausea, exhaustion, a full feeling: so loss of appetite. When I am not on Prednisone, and I begin to lose weight without trying, I am usually happy until the rest of the symptoms kick in! Then I know it will be a major relapse. At this point, I have been on Prednisone since Aug. 2017, so it's only weight gain for now unfortunately! My doctor also put me on oxycodone for pain and targin for breakthrough pain. The oxycodone makes me dizzy and I prefer the targin, which is a slow release oxy based medicine that doesn't make me dizzy or sleepy. I hope this helps. I'm from Hamilton btw....almost neighbours!

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2 replies
nancykeenan | @nancykeenan | Dec 29, 2020
In reply to @kimh "Symptoms are: pain on my right side, nausea, exhaustion, a full feeling: so loss of appetite...." + (show)
@kimh

Symptoms are: pain on my right side, nausea, exhaustion, a full feeling: so loss of appetite. When I am not on Prednisone, and I begin to lose weight without trying, I am usually happy until the rest of the symptoms kick in! Then I know it will be a major relapse. At this point, I have been on Prednisone since Aug. 2017, so it's only weight gain for now unfortunately! My doctor also put me on oxycodone for pain and targin for breakthrough pain. The oxycodone makes me dizzy and I prefer the targin, which is a slow release oxy based medicine that doesn't make me dizzy or sleepy. I hope this helps. I'm from Hamilton btw....almost neighbours!

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Hi Neighbour! My grand daughter is in her 3rd year at the university....thx for those details. I never have pain bad enuf to take a pain pill as I always go to the bathroom. Sometimes have a full feeling, no nausea ever. I obviously have it but maybe it is not bad enuf to have symptoms and nothing showed up in the area where I had the pain. Glad to hear you don’t take oxy any longer as it is very addictive... I will get back to you when I see my doctor. The doctor you go to does he specialize in this problem? Maybe I should get his name from you if you don’t mind.....I will talk again after my appt. thx. Be safe

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