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

@constancelee

I find your discussion interesting. I was diagnosed with SM in 2019 by a biopsy that turned into a major exploratory surgery in Nebraska. He was so sure he’d find cancer. The mass had been seen on a CT. I had complained about having pain. I went on a gluten free diet. It helped somewhat, but overall I feel much better so I stayed on it. When I went to Mayo, they were confident my pain had nothing to do with my SM. They did treat me for some esophageal issues which improved life greatly. The biggest issue is they are treating me for a huge hernia I developed as a result of the first surgery. It was necessary for me to lose weight before surgery to ensure it’s success. They are helping me with my diet and healthy eating. The change in my eating has drastically improved the pain in my abdomen. I’ve lost 50 pounds, eat a low fat, non-sugar and non alcohol diet. I think all of that combined with a fairly stress free life (I retired after the 1st surgery) has made the difference. I truly do not want to take meds. I did celebrate Valentine’s Day with all the forbidden things I just mentioned and had a very rough Monday. For me………it’s all about the diet. Hernia surgery is in March.

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Welcome @constancelee . I also had a surgical biopsy done to confirm the diagnosis was MP and not anything worse. The doctors were worried about it being lymphoma. I'm sure that I got the better diagnosis. What is SM? Do you still have it, despite also having a hernia? I have become painfully aware that our bodies can have more than one thing go wrong! Congrats on the weight loss, btw! That's a wow!!!

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@pcfromfm

Welcome @constancelee to our discussion. Good job loosing weight -never easy! The first time I mentioned good as a strong irritating factor on the Facebook page I had the admin give me quite a blast. But I have continued to talk about it and get ideas from others -and it seems many of us have real problems with certain foods. Maybe a chemical thing somehow but I know -for me-it’s another factor like any other stressor. Good luck with your surgery! I’m certain it will improve many parts of your life!

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I’m generally not but have been lately -there is a extremely informative closed MP site that lays out much of the research info -worth looking at-and many members from around the world.

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@pcfromfm

I’m generally not but have been lately -there is a extremely informative closed MP site that lays out much of the research info -worth looking at-and many members from around the world.

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Maybe worth a check out….

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@pcfromfm

Yes I’ve had a few abdominal surgeries as well which maybe cemented the issue no doubt. I was really ill at 8 -in bed with what they thought was appendicitis but wasn’t-doctor even came to my house. (Olden days -lol!) I have extreme reactions to a number of things -mouth full of sores and overall issues. I’d like to send you my email or can you find it-?

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Yes, please do.

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@kimh

Welcome @constancelee . I also had a surgical biopsy done to confirm the diagnosis was MP and not anything worse. The doctors were worried about it being lymphoma. I'm sure that I got the better diagnosis. What is SM? Do you still have it, despite also having a hernia? I have become painfully aware that our bodies can have more than one thing go wrong! Congrats on the weight loss, btw! That's a wow!!!

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SM Sclerosing Mesenteritis. It is not causing issues for now and it is stable in size. I have a lot of inflammation so I know at any point it could be a problem. On top of this I was diagnosed with Eosinophil Asthma. Somehow, I feel the eosinophil issue is bigger than just asthma.

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@nancykeenan

@ellenos is that the only time you have it? As soon as I can have a bowel movement mine goes away until next night…..I have no other symptoms at all. I can pretty well eat what I want even….I will be waiting with interest to see what your doctor says. Ask if it could be IBS if they found nothing else wrong.

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I met with the GI doctor. He said he did not think my lower abdominal pain was related to MP – his experience was that MP takes a long time to manifest (for people with MP pain). My CT was not with contrast, so he has suggested trying Mirolax first to rule out constipation and if that doesnt work he will have a contrast CT done. Since I started CBD I am having no night pain – I found it hard to believe so I didnt take any last night to see if pain was still even there, and it definitely was. Maybe its enough of a relaxation to stop any cramping.

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@ellenos

I met with the GI doctor. He said he did not think my lower abdominal pain was related to MP – his experience was that MP takes a long time to manifest (for people with MP pain). My CT was not with contrast, so he has suggested trying Mirolax first to rule out constipation and if that doesnt work he will have a contrast CT done. Since I started CBD I am having no night pain – I found it hard to believe so I didnt take any last night to see if pain was still even there, and it definitely was. Maybe its enough of a relaxation to stop any cramping.

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Well isn’t that interesting. A little bit like my GI doctor said. I had my CAT scan with contrast. That’s why he said my pain was related to IBS not MP…..I should try CBD….I am 78 and need to get my head around the CBD. Lol! I will see if my daughter can get it for me. Keep me posted pls. I will let you know if I try the CBD!

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@nancykeenan

Well isn’t that interesting. A little bit like my GI doctor said. I had my CAT scan with contrast. That’s why he said my pain was related to IBS not MP…..I should try CBD….I am 78 and need to get my head around the CBD. Lol! I will see if my daughter can get it for me. Keep me posted pls. I will let you know if I try the CBD!

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I order it online from Straight Hemp which was recommended by the owner of a local health food store. I take the oil under the tongue using the dropper and I use 1 ml and if I wake in the middle of the night I take another half. I have been using it for years for anxiety and decided to try it for the pain. Hope it helps you!

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@ellenos

I order it online from Straight Hemp which was recommended by the owner of a local health food store. I take the oil under the tongue using the dropper and I use 1 ml and if I wake in the middle of the night I take another half. I have been using it for years for anxiety and decided to try it for the pain. Hope it helps you!

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@ellenos. Ok I was good last night, basically nothing. Thx for the info on the CBD. I will have more anxiety thinking about taking it lol! Anyway I will look it up and if this starts getting worse I will order it for sure…. keep in touch pls….

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@ellenos

I met with the GI doctor. He said he did not think my lower abdominal pain was related to MP – his experience was that MP takes a long time to manifest (for people with MP pain). My CT was not with contrast, so he has suggested trying Mirolax first to rule out constipation and if that doesnt work he will have a contrast CT done. Since I started CBD I am having no night pain – I found it hard to believe so I didnt take any last night to see if pain was still even there, and it definitely was. Maybe its enough of a relaxation to stop any cramping.

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My MP, we don't think took a long time to manifest itself. Two weeks to the day of my fall, was when I started feeling the symptoms. I had tried CBD, but it didn't seem to make a difference. Maybe, I should give it another shot?

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@nancykeenan

Well isn’t that interesting. A little bit like my GI doctor said. I had my CAT scan with contrast. That’s why he said my pain was related to IBS not MP…..I should try CBD….I am 78 and need to get my head around the CBD. Lol! I will see if my daughter can get it for me. Keep me posted pls. I will let you know if I try the CBD!

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I use the thc oil to help me sleep. I order it from Spectrum Therapeutics and my doctor renews my prescription annually. The CBD won't get you 'high'. Think of it as an anti inflammatory medication! lol

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@kimh

My MP, we don't think took a long time to manifest itself. Two weeks to the day of my fall, was when I started feeling the symptoms. I had tried CBD, but it didn't seem to make a difference. Maybe, I should give it another shot?

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Thats really interesting about not taking time to manifest – I wondered how he could make this conclusion given its fairly rare. I am not sure about the CBD, I wonder if it is just helping me sleep thru the pain. You do want full spectrum which does include some THC – at least thats what I found when I was investigating using it for anxiety which is why I started taking it. It is so difficult to tell what helps this !

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