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.

@pcfromfm

Morning @marcelk! Welcome to our group-I’m from Alberta Canada. Your story is not dissimilar from so many of ours. I’ve had this disease for years now. Have you found foods that you cannot manage? -a diet that helps? You said some magic words -“stay positive”- for sure so important! -and stick with finding who helps and what works. Eliminate as much stress that you can and rest -so so much more. You are on a hood path-listen to your body and know there are others out here!

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Hello PC, thank you for your reply. It is so good to hear from people with similar complaints as I have, and it is also very good to know that I am not alone.
About your food-question: I have always had problems with my intestines. Sometime they act normal, and sometimes they "mess up". And in most cases it is hard to tell if it is a result of something I ate. So also for my MP it is hard to tell if there is certain food that causes problems.
But I have found out some things that seem to work for me, but not in the way that they cure things: don't eat to many in one time (little portions is better) and food with a lot of fat doesn't improve the situation. I'm also trying to lesser my use of sugar.
But I don't quit eating all the things I like, because dealing with MP is hard enough, so there is no need to make your life more uneasy.
But I try to eat less of the "bad" things and more of the healthy things. Although I've always done that in my life.

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@kimh

Hi Marcel,
I was diagnosed at 49 and am 56 now. I did go into remission for two years, but by August 2017, MP reared it's ugly head again and it has been a huge struggle to try to reach remission again. The first outbreak was solved with 3 months of Prednisone (40 mg) and then a taper down for another three months. But the side effects were many for me and I ended up suffering from esophageal spasms (feel like a heart attack), so the doctors took me off. This time around, I have not been so lucky, and like you, am also on Azathioprine (4 pills daily) and Tamoxifen (20 mg.) daily as well. This site has been very helpful for me and it really helps to talk to people that 'get it'. I hope the tamoxifen proves to be successful for you! Also, for me, stress and cold, wet climate (I'm from Canada) play large roles in how I am feeling. I hope this was helpful for you….

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Hello Kim, Thank you for your reply.
I have had two courses of prednisolon (20mg for two weeks) and that gave a lot of side effects, but it helped to reduce the pain and complaints I had at that time. But the "mass", visible on echo's and CT-scan, were not reduced in any way. And the problems were increasing again very soon afterwards.
I have had the same "heavy" Prednisolon course you had, from September last year, and it did maybe something, but it gave very heavy side effect, so over all it might have done more damage that that it did good.
But I'm using Tamoxifen (10mg, once a day) now for almost three weeks and my complaints are much less now: I have less pain and more energy. But I still have to watch my energy-levels, and stress and other things that take a lot of energy are not doing any good to my situation.

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@marcellk

Hello PC, thank you for your reply. It is so good to hear from people with similar complaints as I have, and it is also very good to know that I am not alone.
About your food-question: I have always had problems with my intestines. Sometime they act normal, and sometimes they "mess up". And in most cases it is hard to tell if it is a result of something I ate. So also for my MP it is hard to tell if there is certain food that causes problems.
But I have found out some things that seem to work for me, but not in the way that they cure things: don't eat to many in one time (little portions is better) and food with a lot of fat doesn't improve the situation. I'm also trying to lesser my use of sugar.
But I don't quit eating all the things I like, because dealing with MP is hard enough, so there is no need to make your life more uneasy.
But I try to eat less of the "bad" things and more of the healthy things. Although I've always done that in my life.

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Morning @marcrllk ! Good to hear you are listening to your body. I sure believe we are chemical beings. Everything we come in contact with, ingest and/or breath effects us somehow. I tend to be “sensitive” and try to be aware, what might be a trigger. I have a strong reaction or next-to-no reaction. Same thing with my asthma. But I go from being ok , being ok, to not ok at all and in the middle of a very strong reaction. My allergies are like that too. Crazy body. But I have found with more rest ( not a good sleeper) just down time, watching tv, relaxing and direct attempts to eliminate stress-I’m much better. How about you? Do you find stress if all kinds bites?

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Hi @pcfromfm ! The same is true for me regarding rest and keeping stress down to try to battle symptoms. The other thing that is killer on my body is climate! The dampness, wetness and cold do me in every time….and of course, we just keep getting dumped on with snow! I hope it's not an Alberta clipper lol!!!

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Warmer weather starting end of the week Kim! Thank goodness! Such a bout of cold, right!? Balmy -18 today here! But above zero by Sat they say! Snow to melt! Yea! Yes I’m affected by cold too. Interesting Doc I had said that might have been onset of issue with mp -when I was 8 I had hypothermia.

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Really? I hadn't heard about hypothermia being a trigger! I had heard about abdominal surgeries and severe back trauma as possible triggers. For me, it seemed like an obvious connection. Though I have had several abdominal surgeries, two weeks before the onset on my MP symptoms, I had had a bad slip and fall on black ice and landed on cement right on my back, which btw, was a result of a freak ice storm on March 19 (2014)….two days before Spring, officially! And yes, you are right about the weather going on an upswing soon! Thank goodness, I'm aching everywhere and have a heating pad attached to me to try to help. I took an infrared sauna to help and it did for about half an hour! We are at -9 right now, better than you guys…but not much lol!!!

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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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I wouldn't know how to look for it!

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Are you a member of the Facebook Mp group Kim?

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@kimh

Really? I hadn't heard about hypothermia being a trigger! I had heard about abdominal surgeries and severe back trauma as possible triggers. For me, it seemed like an obvious connection. Though I have had several abdominal surgeries, two weeks before the onset on my MP symptoms, I had had a bad slip and fall on black ice and landed on cement right on my back, which btw, was a result of a freak ice storm on March 19 (2014)….two days before Spring, officially! And yes, you are right about the weather going on an upswing soon! Thank goodness, I'm aching everywhere and have a heating pad attached to me to try to help. I took an infrared sauna to help and it did for about half an hour! We are at -9 right now, better than you guys…but not much lol!!!

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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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@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 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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@pcfromfm

Are you a member of the Facebook Mp group Kim?

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No. I'm not a FB kinda gal lol

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