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

@kanaazpereira

Hi @jcdeep,

I can imagine how worried you must be, and I want to thank you for reaching out to the Connect community. Living with a chronic condition can be so difficult and frustrating. Here is some information about Sclerosing mesenteritis care at Mayo Clinic, which I would encourage you to read:
https://www.mayoclinic.org/diseases-conditions/sclerosing-mesenteritis/care-at-mayo-clinic/mac-2035509vdouglas

You may notice that I moved your discussion and combined it with this existing discussion on sclerosing mesenteritis as I thought it would be beneficial for you to be introduced to the many members in this group – I'm tagging @kimh @jaimeworth89 @doron @musicflowers4u @warlick @sjean @pcfromfm @fernandoparce @cconnors @bertbiz @vdouglas who've also been living with MP and who would be happy to answer your questions.
If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members talking about their or their loved ones' experiences.

@jcdeep, as you will read, sclerosing mesenteritis is rare, and it's not clear what causes it; has your current healthcare team in the hospital given you an explanation for what's causing the pain? Have they prescribed any pain medications?

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I have not been officially diagnosed. I was discharged from 10 day inpatient stay with no answers today. I found this disease by reading my The impression from the radiologist on my CT scan. One doctor that I saw suggested I go to Mayo Clinic because they will better understand and have the ability to diagnose. I was discharged with tramadol and prednisone.

@jcdeep

Can anyone please share how they got diagnosed with this disease and what your medical findings and symptoms were.

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I am a 66 y old woman. With MP. Diagnosed end of 2017 from keyhole examination, after CT scan showed thickening around the bowel Messentry, went on steroids for 4 mths, but due to their effect on my bone density had to come off. Am still on tomoxefen, indefinitely. My symptoms were pain in stomach and cramps. I am not too bad at present, although last month I had a month of bad cramps. I am under a gastrointestinal specialist in Aussi. I get really tired if I do too much bending / gardening etc, so have to pace myself. Some say this condition can just go away….I’m hoping for that,…for you too !

@jcdeep

I have not been officially diagnosed. I was discharged from 10 day inpatient stay with no answers today. I found this disease by reading my The impression from the radiologist on my CT scan. One doctor that I saw suggested I go to Mayo Clinic because they will better understand and have the ability to diagnose. I was discharged with tramadol and prednisone.

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Hi @jcdeep,

Mayo Clinic doctors care for more than 200 people with sclerosing mesenteritis each year, and have a lot of experience diagnosing and treating this rare condition.
Also, Mayo Clinic in Rochester, Minnesota, ranks No. 1 as the best gastroenterology and gastrointestinal (GI) surgery hospital in the U.S. News & World Report Best Hospitals rankings.

If you would like to make an appointment at Mayo Clinic, please call one of our appointment offices. You can also request an appointment online. The contact information for Minnesota, Arizona and Florida can be found here: http://www.mayoclinic.org/appointments

@jolied

I am a 66 y old woman. With MP. Diagnosed end of 2017 from keyhole examination, after CT scan showed thickening around the bowel Messentry, went on steroids for 4 mths, but due to their effect on my bone density had to come off. Am still on tomoxefen, indefinitely. My symptoms were pain in stomach and cramps. I am not too bad at present, although last month I had a month of bad cramps. I am under a gastrointestinal specialist in Aussi. I get really tired if I do too much bending / gardening etc, so have to pace myself. Some say this condition can just go away….I’m hoping for that,…for you too !

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I had a laparoscopy which seems to be the same thing as a keyhole exam. During the procedure they saw the thickening but did not diagnose me. I as well had a CT scan that showed thickening around the bowel Mesentery. My symptoms are cramping in the abdomen as well. Not sure why I couldn’t get a diagnosis! One thing that seems different with me is I have bilateral pleural effusions with unknown cause. Has anyone else had this? Thank you for the feedback!

@jcdeep

I have not been officially diagnosed. I was discharged from 10 day inpatient stay with no answers today. I found this disease by reading my The impression from the radiologist on my CT scan. One doctor that I saw suggested I go to Mayo Clinic because they will better understand and have the ability to diagnose. I was discharged with tramadol and prednisone.

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Have you gone to the Mayo Clinic? I have been diagnosed and am on Prednisone, tamoxifen and oxycodone for pain. I have been out of remission for over a year now and still symptomatic unfortunately. It may be time to look at some immunosuppressant medications….

@jcdeep

I had a laparoscopy which seems to be the same thing as a keyhole exam. During the procedure they saw the thickening but did not diagnose me. I as well had a CT scan that showed thickening around the bowel Mesentery. My symptoms are cramping in the abdomen as well. Not sure why I couldn’t get a diagnosis! One thing that seems different with me is I have bilateral pleural effusions with unknown cause. Has anyone else had this? Thank you for the feedback!

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Hi JC, I have been tentatively diagnosed with MP from an MRI. I get an MRI every 2 years for recurrence of IPMNs in my pancreas. I too have more pain at night and especially the morning. Being horizontal is my biggest provocateur. Mine was probably caused by numerous abdominal surgeries. Unfortunately no one biopsied my panniculitis during the surgeries, they just wrote "dense fibrous adhesions". Now no one is willing to go back in to get a biopsy. I sense they think it's all in my head. I've been on prednisone for a week without any improvement. The NSAIDs helped but my stomach/bowels can not tolerate them. Acetaminophen helps. Pain meds are very hard to obtain in my state. I can't eat large or hard to digest meals. Apparently biopsy is the gold standard for diagnosis. Did you get your biopsy report?

@steve_b

Hi JC, I have been tentatively diagnosed with MP from an MRI. I get an MRI every 2 years for recurrence of IPMNs in my pancreas. I too have more pain at night and especially the morning. Being horizontal is my biggest provocateur. Mine was probably caused by numerous abdominal surgeries. Unfortunately no one biopsied my panniculitis during the surgeries, they just wrote "dense fibrous adhesions". Now no one is willing to go back in to get a biopsy. I sense they think it's all in my head. I've been on prednisone for a week without any improvement. The NSAIDs helped but my stomach/bowels can not tolerate them. Acetaminophen helps. Pain meds are very hard to obtain in my state. I can't eat large or hard to digest meals. Apparently biopsy is the gold standard for diagnosis. Did you get your biopsy report?

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@steve_b

I can relate to the horizontal pain. I toss and turn to find the right position bto ease the pain, sometimes morning comes and I feel like I'm still trying to fall asleep. Two CT scans, the second with contrast, showed numerous enlarged lymph nodes throughout with Mesenteric root showing increased attenuation and encapsulation. My pain radiates out from kind of my left side out to entire abdomen. Sometime it feels like pressure pointing in, sometime like alien trying to bust out. I was given Prednisone treatment once and I had some relief, but now my gastroenterologist and primary care want to send me to pain management and follow up CT in March (6 months). All my blood tests have been normal, liver, kidney, normal. Ultra-good good colonoscopy. Everything hurts, nobody cares.

Wow @aland! Your symptoms sound awfully familiar to me….except my pain is on the right….I have been weaning off the Prednisone (I have been on them since August 2017) and the pain has returned to the point that it feels like a complete relapse. My GI hasn't responded to my numerous emails and/or calls to the office for some sort of direction which is very frustrating to be sure. I am also on tamoxifen which is supposed to help. Maybe I would be worse without it? I almost think that medical hands are being thrown up in the air as to what to do to help me. I actually had a life before I was diagnosed with this disease. We all did. Try not to get frustrated, but I think most of us on this forum have been frustrated at some point or another with the lack of help and research. I would be interested in hearing about the pain management clinic and if it helps you. Take care.

Gee! Make an appointment with the guy – or woman. Some doctors dispense advice over the phone and are liberal at saying "call me." But some just dont have the time – there are other patients they need to deal with as well. Or, they are just running a small business and need to make money. Advice is all they can sell. Or change mds if this person is truly throwing up their hands. Good luck to you, It is easy to give advice when we are not in pain and so difficult when we are in the throes of the pain. Wishing you good karma.

@aland

I can relate to the horizontal pain. I toss and turn to find the right position bto ease the pain, sometimes morning comes and I feel like I'm still trying to fall asleep. Two CT scans, the second with contrast, showed numerous enlarged lymph nodes throughout with Mesenteric root showing increased attenuation and encapsulation. My pain radiates out from kind of my left side out to entire abdomen. Sometime it feels like pressure pointing in, sometime like alien trying to bust out. I was given Prednisone treatment once and I had some relief, but now my gastroenterologist and primary care want to send me to pain management and follow up CT in March (6 months). All my blood tests have been normal, liver, kidney, normal. Ultra-good good colonoscopy. Everything hurts, nobody cares.

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Please send a one-page letter about the tests you have had and what doctors have and have not done for you and request an appointment preferably at Gastro Dept., Mayo Clinic, Rochester, MN, Attn Drs Alexander or Pardi. Google for their phone and Fax

@kimh

Wow @aland! Your symptoms sound awfully familiar to me….except my pain is on the right….I have been weaning off the Prednisone (I have been on them since August 2017) and the pain has returned to the point that it feels like a complete relapse. My GI hasn't responded to my numerous emails and/or calls to the office for some sort of direction which is very frustrating to be sure. I am also on tamoxifen which is supposed to help. Maybe I would be worse without it? I almost think that medical hands are being thrown up in the air as to what to do to help me. I actually had a life before I was diagnosed with this disease. We all did. Try not to get frustrated, but I think most of us on this forum have been frustrated at some point or another with the lack of help and research. I would be interested in hearing about the pain management clinic and if it helps you. Take care.

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@kimh I will. Different network doctor and my electronic records don't transfer…UGH

@steve_b

Hi JC, I have been tentatively diagnosed with MP from an MRI. I get an MRI every 2 years for recurrence of IPMNs in my pancreas. I too have more pain at night and especially the morning. Being horizontal is my biggest provocateur. Mine was probably caused by numerous abdominal surgeries. Unfortunately no one biopsied my panniculitis during the surgeries, they just wrote "dense fibrous adhesions". Now no one is willing to go back in to get a biopsy. I sense they think it's all in my head. I've been on prednisone for a week without any improvement. The NSAIDs helped but my stomach/bowels can not tolerate them. Acetaminophen helps. Pain meds are very hard to obtain in my state. I can't eat large or hard to digest meals. Apparently biopsy is the gold standard for diagnosis. Did you get your biopsy report?

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Please get your best opinion at Mayo Clinic, Rochester, MN, Attn Drd Alexander or Pardi, google phone and Fax for details.

@aland

I can relate to the horizontal pain. I toss and turn to find the right position bto ease the pain, sometimes morning comes and I feel like I'm still trying to fall asleep. Two CT scans, the second with contrast, showed numerous enlarged lymph nodes throughout with Mesenteric root showing increased attenuation and encapsulation. My pain radiates out from kind of my left side out to entire abdomen. Sometime it feels like pressure pointing in, sometime like alien trying to bust out. I was given Prednisone treatment once and I had some relief, but now my gastroenterologist and primary care want to send me to pain management and follow up CT in March (6 months). All my blood tests have been normal, liver, kidney, normal. Ultra-good good colonoscopy. Everything hurts, nobody cares.

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@aland Our symptoms and test results are very similar. Mine is completely left sided. My long time GI doc got so frustrated a few years ago that he said he will only see me once a year for a check up. There are only two GI practices in town with about 40 docs total and no one else would see me saying I was receiving adequate care. Eventually it was found that they have an agreement not to "poach" each others patients. After a few years of complaints to various officials they allowed me to see a new foreign doc who just graduated from a school in the Bahamas. There is a huge shortage of docs in the state. This doc was resentful of taking me on and didn't treat me well which is I hear common in his country. This year I found a semi-retired rural GI doc who has been supportive but has no experience treating anything like MP. I went to a pain clinic last week and was only allowed to see a nurse practitioner, apparently you only see the doctor for major procedures. They offer opioids on a very strict program which I'm trying to avoid. Otherwise they offered a celiac plexus nerve block which I am considering but there can be substantial side effects and without being able to discuss it with the doctor before the procedure I'm reluctant at this time.

@marlaxyz

Gee! Make an appointment with the guy – or woman. Some doctors dispense advice over the phone and are liberal at saying "call me." But some just dont have the time – there are other patients they need to deal with as well. Or, they are just running a small business and need to make money. Advice is all they can sell. Or change mds if this person is truly throwing up their hands. Good luck to you, It is easy to give advice when we are not in pain and so difficult when we are in the throes of the pain. Wishing you good karma.

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Thank-you for your very warm wishes….actually nice that someone wants to respond to me….

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