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

@dinayo

Hello, my GI informed me yesterday my recent MRI shows "some scarring" & that I'll likely have this disease for life. Is this the same as "fibrosis" and does it indicate I'm in the more advaced third stage of this disease? Also, is one more likely with this disease to acquire a cancer/malignancy throughout their lifetime? Does it mean a more shortened lifespan? In terms of medical care for MP/SM what is the usual yet best proactive approach from this point on regarding requesting preventative/beneficial/ repeated lab tests/ imaging scans/ or other? Thank you for any & all valuable advice/help/experience/suggestions & my best & prayers to all suffering from this. 🙏

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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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@jolied

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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Hi Jolied, thank you for your helpful and informative post. It helps me put this MP diagnosis and what to expect more in perspective. And your advice regarding diet and limiting exercise is something l'll be more aware of. I hope you are and stay as well and as pain free as possible. You seem to have a control and self awareness of this disease that I will very much try & adopt myself. Thank you for your kind help💛Di

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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.

Liked by dementorshoes

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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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Hi. I also was diagnosed with Mesenteric Panniculitis & feel & have many of the same symptoms you've described. As it's so rare many of us feel alone as you do. There is a wonderful & helpful Facebook page for those suffering from this. It's private to protect our medical information & to speak freely. Message "Lisa Schwart Tulsa" & request to join the group "Sclerosing Mesenteritis". It's been really helpful emotionally and with what type of medications work best, where to find doctors who can help, and to just talk about what you're going through with others providing suggestions, help, and solace. You're not alone & you can get help 🙂

Liked by dementorshoes

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@musicflowers4u

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.

Jump to this post

Hello, could you tell us how you were successfully able to get a referral to the Mayo Clinic to be seen? I've had trouble getting my Drs to approve one. Was wondering, if you may know, are Dr referrals required and how easy or difficult is it to be seen by a GI at Mayo?Thanks for sharing your story & it's wonderful you've had a positive outcome.

Liked by dementorshoes

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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.

Liked by dementorshoes

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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.

Liked by dementorshoes

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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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Hello everyone. Is the facebook group still active? I have messaged Lisa via her link to her FB profile and am awaiting a reply. I understand that she is probably a busy lady, and not on Facebook all the time.
Do any of you have back pain, and how do you manage it? I'm just taking panadol osteo, and sometimes panadeine forte. As I'm only newly diagnosed and still have to wait 2 weeks to see a specialist, I'm not sure how best to manage. Thank you😊

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@shez61

Hello everyone. Is the facebook group still active? I have messaged Lisa via her link to her FB profile and am awaiting a reply. I understand that she is probably a busy lady, and not on Facebook all the time.
Do any of you have back pain, and how do you manage it? I'm just taking panadol osteo, and sometimes panadeine forte. As I'm only newly diagnosed and still have to wait 2 weeks to see a specialist, I'm not sure how best to manage. Thank you😊

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Yes, when my MP was active I had horrible back pain directly related to MP.

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@dinayo

Hello, could you tell us how you were successfully able to get a referral to the Mayo Clinic to be seen? I've had trouble getting my Drs to approve one. Was wondering, if you may know, are Dr referrals required and how easy or difficult is it to be seen by a GI at Mayo?Thanks for sharing your story & it's wonderful you've had a positive outcome.

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Write a one page letter to Dr Pardi or Dr Alexander at Mayo Clinic Gastro Dept in Rochester, MN. Explain your symptoms and pain level, and state what tests you have had and what doctors you have seen and results or non results. Ask for an appointment. You will be contacted with an appointment followed by a schedule for bloodwork, scans, consults. Expect to spend 10 days. They are very thorough. I consented to an exploratory and was diagnosed with Carcinoid Cancer. My MP was a symptom of that underlying rare cancer which local surgeons and specialists were never experienced to know what to look for. Book a flight on Delta Mayo. Stay at hotel right across from Mayo bldg. Mayo will send you a list of places to stay. Good luck.

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@musicflowers4u

Write a one page letter to Dr Pardi or Dr Alexander at Mayo Clinic Gastro Dept in Rochester, MN. Explain your symptoms and pain level, and state what tests you have had and what doctors you have seen and results or non results. Ask for an appointment. You will be contacted with an appointment followed by a schedule for bloodwork, scans, consults. Expect to spend 10 days. They are very thorough. I consented to an exploratory and was diagnosed with Carcinoid Cancer. My MP was a symptom of that underlying rare cancer which local surgeons and specialists were never experienced to know what to look for. Book a flight on Delta Mayo. Stay at hotel right across from Mayo bldg. Mayo will send you a list of places to stay. Good luck.

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Thank you❤️

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@shez61

Hello everyone. Is the facebook group still active? I have messaged Lisa via her link to her FB profile and am awaiting a reply. I understand that she is probably a busy lady, and not on Facebook all the time.
Do any of you have back pain, and how do you manage it? I'm just taking panadol osteo, and sometimes panadeine forte. As I'm only newly diagnosed and still have to wait 2 weeks to see a specialist, I'm not sure how best to manage. Thank you😊

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Hi! Yes, it took about a week for me to get accepted to the Facebook group but you should hopefully be soon. Make sure you messaged & contacted 'Lisa Schwart Tulsa'. She says herself she gets busy but she is great about getting back to you & ultimately getting added on. Re message her several times- as I had to- if you don't hear back from her. 👍🙏

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