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 have been diagnosed
Too
But never even told what symptons are. My GP still thinks it is IBS. Every morning pain in my stomach, go to bathroom goes away then back next morning. Slight constipation, bloated, can’t eat much at one time. What are your symptoms?

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@nancykeenan

I have been diagnosed
Too
But never even told what symptons are. My GP still thinks it is IBS. Every morning pain in my stomach, go to bathroom goes away then back next morning. Slight constipation, bloated, can’t eat much at one time. What are your symptoms?

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Hi Nancy,
My symptoms,sharp pain my right side when attack come , specially when I eat grains, wheat , diary, inflammation in kidney , frequently going to bathroom, some time diarrhea and some times fell slightly of consiption, bloating all time , burning sensation in ruin but it’s not UTI, my suggestions sleep early, a lote of water and avoid bloated food , try to do fasting and Yogert and herb tea help to but no Caffein

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I never really have an attack, just feel discomfort low on my right every morning until I have a bowel movement. I have the bloating and can’t eat as much as I did. Have more constipation then diarrhea. I will check what I am eating. Thx so much!

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@irishgirl1

Hi, so grateful to have found this group. I’m a44 year old Irish female diagnosed with MP two years ago with no other underlying conditions. Like many others on here my doctor had never treated anyone with this before. My gastric consultant said it’s an autoimmune disease so passed me off to a rheumatologist who said as I had no obvious joint problems that it wasn’t her area so I get fobbed off again and left to fend for myself. My GP suggested I take prednisone for flare ups and that usually helps for a while. Currently going through a flare up right now with abdominal pain, back pain under my rib cage, bloating, constipation and pain in my right eye.

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@irishgirl1 I see a Mayo MP specialist. I take Dicyclomine for flare ups, instead of prednisone, as well as Ondansetron when nausea hits. Both work wonders! I also have Oxycodone if those don't work and the pain isn't bearable.

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Just diagnosed - but doctors won't agree. I am not sure they even know what to do with the pain. What is the prognosis

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Does anyone have pain every morning upon waking very low on right side. Massage it and after bowel movement, pain gone until next morning. Was periodically now every morning. Had helps to have bowel movement. Any suggestions !

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@camih00

Hi Bill. While you wait for some conversation to build here, I thought I'd share a Mayo Clinic patient story that might be of interest to you: http://www.mayoclinic.org/patientstories/story-441.html

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Hi Bill! Welcome! I was diagnosed at 55 after many years of extreme symptoms. The team of doctors at a University Hospital told me I may have had this since I was eight -experiencing hypothermia then, although auto immune issues definitely run in my family. I have 3-6 “episodes” a year, when I was younger many more and a few years it was constant. I have learned what I can eat and do. Stress and lack of sleep or rest being a major factors. A positive attitude essential and constant awareness of what you need to do to feel as best as you can. When episodic medical help almost always essential. Finding your triggers is so important. I’ve done the elimination diet several times with much success. Best of luck and health! Ask any questions you need to!

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@pcfromfm

Hi Bill! Welcome! I was diagnosed at 55 after many years of extreme symptoms. The team of doctors at a University Hospital told me I may have had this since I was eight -experiencing hypothermia then, although auto immune issues definitely run in my family. I have 3-6 “episodes” a year, when I was younger many more and a few years it was constant. I have learned what I can eat and do. Stress and lack of sleep or rest being a major factors. A positive attitude essential and constant awareness of what you need to do to feel as best as you can. When episodic medical help almost always essential. Finding your triggers is so important. I’ve done the elimination diet several times with much success. Best of luck and health! Ask any questions you need to!

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Hi, what kind of food you are avoiding to get attack and what kind of medication offer it to you when the pain come back .Thanks

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@nancykeenan

Does anyone have pain every morning upon waking very low on right side. Massage it and after bowel movement, pain gone until next morning. Was periodically now every morning. Had helps to have bowel movement. Any suggestions !

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This is what happened to me and still happening , my advice avoid grains that number one, wheat sugars, diary except yogurt and Caffein because all these make it worse , solve it with plants of water and herbs tea such as mint tea , Chamomile and Plain real yogurt . I don’t know if experiences bloating to

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@smezaael

Hi, what kind of food you are avoiding to get attack and what kind of medication offer it to you when the pain come back .Thanks

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Morning! I’m in Canada and take extra strength Gravol as soon as I start to feel nauseous st all. It’s hardly strong enough. I’m not good with most pain meds. Can’t take morphine/Percocet/oxy so I’m still just using teva-lenoltec#3.
I can’t eat processed foods, no alcohol, (😟) no corn or onions in any form(powder, sugars etc) no strong spices, no chemicals or artificials in drinks or foods, only small meals, less meat, no milk, very little red meat, life is pretty plain! Lol! I seem to have no problems with most grains or cane sugar. Everything else (just about) in moderation. Stress of any kind ( I had a very stressful profession and now I’m retired-what a difference-even though I loved it!) I require much more downtime than others, not sleeping so much but quiet time. Staying positive and happy sure helps! Have you found some triggers?

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