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 think most of us seem strong because we have been living with this diagnosis for a while. Someone on this site recommended a book titled, How To Be Sick by Toni Bernhard. This book helped me beyond belief! It comes from a Buddhist perspective and though I am not Buddhist, this book was written to appeal to anyone. Like you, I had to alter my mindset and concentrate on what I am able to do (though that may differ daily depending on my symptoms) rather than what I can no longer do. I also had to learn to limit my exposure to stressful situations and that was toughest on me because I had to learn to say 'no' or distance myself at stressful times. lol…I'm still working on that….

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I was the same way when I relapsed because it has taken so long to bounce back….if ever….so I have started reading again and I also began painting. This 'expansion' of myself has allowed me to put some value on what I am able to do and also provides me with something to focus on besides my physical health!

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Thanks Di, Yes we can all support each other which is wonderful. I also like the comments about refocusing on other things, like reading, painting etc. I love to garden and Autumn is a beautiful time of the year to be out and about, with trees turning all sorts of shades of reds, oranges and yellows. I limit myself though, and can't do what I used to, but still enjoy this wonderful pastime of pottering around, cutting back , mulching and even weeding. Yes, we can't let this condition get on top of us, we need to be always thankful for what we have and what we can still do. Prayers for you.

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Hi Di, I don’t know about the fibrosis as your dr said. My MP is an inflammation of the messentry (that’s the fatty part that holds the bowel together). I am just on tomoxefen, now, as I said before and I think this is a cancer preventative. They often give this drug to women who have had breast cancer. I continue to have blood tests and a CT scan every year or 2. I have been told that this condition MP, can just go away! I’m hoping and praying for this. Try not to get stressed, less of that is better. Don’t overdo exercise and try and eat well, cutting out the fatty foods. 🙏 ps I have also been recording what food I eat each day since January. Just to see if anything triggers…..but nothing is jumping out as beng detrimental……..(and really , certain food should not really make things worse, as MP is on the outside of the bowel. )

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Hope I am helpful with my story. I have posted before but probably newbies have not seen it. After
many years of symptoms and area gastro and surgeons failing to know what my symptoms could really mean I consulted Mayo Clinic. Even after a CT scan at ER in my Home area, doctors failed to make the connection that an enlarged lymph node in the mesentery which indicated need for biopsy might be something more serious. And all the doctors telling me it was impossible to get to that location to do a biopsy. But it was possible at Mayo Clinic. Turns out my case was Stage IIIB, MENS1, neuroendocrine Carcinoid Cancer. Only found through an exploratory. Three feet of small bowel, 12 tumors and 13 lymph nodes removed. Follow-up every six months bloodwork and yearly scan now at Dana Farber. Had Octreoscan, also Gallium-68 scan now available in America since 2016 previously only in Germany and I believe Switzerland (please google to fact check me). So far cancer free since July 2016. I, too, had nausea, 25 pound weight loss, painful abdominal and back pain, diarrhea. Finally pursued best care ever at Mayo Clinic. They saved my life.

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Hello everyone. After years of random symptoms on and off, a doctor finally decided to to Physical examination of my abdomen, sent me for a CT scan which revealed MP. Apparently I presented as someone with diastasis recti in the upper abdomen.
I am waiting on a chat with a gastroenterologist in 3 weeks and don't know what the future holds.
I also have an uncommon adipose disorder called lipoedema which causes inflammation and pain.
Ì would be happy to interact with this group as I feel very alone with this. I live in rural Queensland Australia where there is the Aussie pervading She'll be right mate" attitude.
I have symptoms which are getting worse right now which my doctor believes aren't related to MP.
My upper abdomen in very distended and painful when pressed. I get niggly pain down the right side at random times, but a lot of pain across the middle back.
Sometimes I feel queasy, though not nauseous and have recently experienced a bit of heartburn in the evenings.
I'm also fatigued ALL the time and sometimes find it hard to catch my breath. Today I'm at our local markets, sorting to write this post, as my head is fuzzy, affecting my walking.
I have had a lot of bariatric procedures over the past 20 years, and sometimes I feel some pressure on the back of my larynx when lying or bending over.
I am keen to join the facebook group of its still operational a there's not much support out here.
Thanks for reading.
Blessings.
Sheryle🦋🌻

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@shez61

Hello everyone. After years of random symptoms on and off, a doctor finally decided to to Physical examination of my abdomen, sent me for a CT scan which revealed MP. Apparently I presented as someone with diastasis recti in the upper abdomen.
I am waiting on a chat with a gastroenterologist in 3 weeks and don't know what the future holds.
I also have an uncommon adipose disorder called lipoedema which causes inflammation and pain.
Ì would be happy to interact with this group as I feel very alone with this. I live in rural Queensland Australia where there is the Aussie pervading She'll be right mate" attitude.
I have symptoms which are getting worse right now which my doctor believes aren't related to MP.
My upper abdomen in very distended and painful when pressed. I get niggly pain down the right side at random times, but a lot of pain across the middle back.
Sometimes I feel queasy, though not nauseous and have recently experienced a bit of heartburn in the evenings.
I'm also fatigued ALL the time and sometimes find it hard to catch my breath. Today I'm at our local markets, sorting to write this post, as my head is fuzzy, affecting my walking.
I have had a lot of bariatric procedures over the past 20 years, and sometimes I feel some pressure on the back of my larynx when lying or bending over.
I am keen to join the facebook group of its still operational a there's not much support out here.
Thanks for reading.
Blessings.
Sheryle🦋🌻

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Forgot to mention that I've had IBS type symptoms for years which took a turn for the worse in 2015, embarrassingly resulting in chronic diarrhoea and an incontinent bowel sometimes through the night, and a couple of times at work. Thankfully that side of things has settled somewhat, though still problemsome.

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Hello, everyone. Sorry to hear so many struggling with MP. Just recently diagnosed. Still doing blood tests, lymph node biopsy, etc., etc.
Question: Does anyone experience migraine type headaches when the abdominal pain intensifies? Greatly appreciate everyone's sharing. Thank you.

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@lfrwbr

Hello, everyone. Sorry to hear so many struggling with MP. Just recently diagnosed. Still doing blood tests, lymph node biopsy, etc., etc.
Question: Does anyone experience migraine type headaches when the abdominal pain intensifies? Greatly appreciate everyone's sharing. Thank you.

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I would have flu like symptoms when my pain and cramps are bad. Yes a little headache, but not migraine. Look after yourself and don’t overdo it.

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Hi kids. Hope everyone is hanging in there. Fresh out of my last hospital stay. Not to sound melodramatic, but I've honestly lost count of how many stays I've had since diagnosed with MP in January. Let's say I've been more in than out. They, of course, don't know what to do other than manage pain and other symptoms. I've shared before that I 'graze' eat to control the nausea. It no longer does, so I'm taking Zofran around the clock. Pisses me off. Suffered a bad bout of pancreatitis, had to be courtesy of MP. I wanted to share that I've been on Protonix, with awesome results. Heartburn is gone. Back on another short round of steroids, but it will end once my PCP has his say. I've graduated to Morphine PO, with Percocet for breakthrough pain, and I resent having to take them them both. I'm waiting on authorization for the cerebral angiogram on my aneurysm (My nice, quiet, killer problem that should take the limelight from the MP, but doesn't.). Ok, I'm done whinning. Try out Protonix, my friends. And hang in there everybody.

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