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

@buckeyze

Hi everyone. I’m Chris. A 40 yo healthy (so I thought), asymptomatic, White male from Michigan. I had an abdominal CT scan a year ago (actually looking for something else) that mentioned possible MP (abnormal jejunal fat and enlarged lymph nodes)…and had another scan just a week ago that shows increased jejunal fat with no change in lymph nodes. I’m going to see a doctor at the University of Michigan hospital in 2 weeks. I’m really scared and sad right now, but glad I found this group.

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I’m really hoping there are reasons to be optimistic.

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I am a 40 yr old woman, with no symptoms. I went in for roux Y gastric bypass surgery and the surgeon discovered the mass before performing the surgery. I have been diagnosed with M/P and since I have no symptoms (pain, discomfort) I have been given no treatment. I go back in 2 months for a follow up CT Scan. I’m wondering does this disease go away on its own? Is there anything I can do to help get rid of this mass? TIA

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@buckeyze

Hi everyone. I’m Chris. A 40 yo healthy (so I thought), asymptomatic, White male from Michigan. I had an abdominal CT scan a year ago (actually looking for something else) that mentioned possible MP (abnormal jejunal fat and enlarged lymph nodes)…and had another scan just a week ago that shows increased jejunal fat with no change in lymph nodes. I’m going to see a doctor at the University of Michigan hospital in 2 weeks. I’m really scared and sad right now, but glad I found this group.

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There is always a reason to be optimistic. If you are not in much pain that is a good start. I am wondering how many people have this and don't know it and it never progresses. If your pain and other symptoms are manageable, continue with a normal life until something changes.
Keep a folder with all of your medical test. Ask for copies of everything even CT's and MRI's, get a paper report and disc CD copy put it all in one file folder you can take with you if you have any issues.
Keep your chin up and remember, this body we have is pretty tough and it wants to survive at all cost. Live your life as normal as possible. Best wishes for normalcy

VonD

Liked by dianenero

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Hi there my name is Mary. I think it’s interesting that people are talking about paleo because I have just been thinking about it since grains, beans, nuts and dairy all seem to irritate. (If I ate nothing but chicken and lettuce I would probably be fine.)

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@buckeyze

Hi everyone. I’m Chris. A 40 yo healthy (so I thought), asymptomatic, White male from Michigan. I had an abdominal CT scan a year ago (actually looking for something else) that mentioned possible MP (abnormal jejunal fat and enlarged lymph nodes)…and had another scan just a week ago that shows increased jejunal fat with no change in lymph nodes. I’m going to see a doctor at the University of Michigan hospital in 2 weeks. I’m really scared and sad right now, but glad I found this group.

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I’m 51. I was so scared when I was diagnosed with SM. And that was weeks ago, I only just found this group. My gastroent. doctor told me not to worry, not that big a deal, but that’s easy for him to say….Try to ease your mind a little. At least you have no symptoms and it is possible it will go into remission. Your doctor might recommend a colonoscopy just to be on the safe side. I have relatively mild symptoms and I’m hoping I don’t have to start medication. You are in the best possible position and it’s been found very early. Good luck.

Liked by Rbrowilson

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@doron

Although I am a private person, my goal in this post is to tell everyone that I have controlled my symptoms for 2.5 years without any drugs. On a CT scan 5 years ago the radiologist saw inflammation of lymph nodes and wasn’t sure what it was but suspected mesenteric panniculitis. I was not symptomatic. In August of 2012, I came down with severe pain and bloating, and for two months I could not sleep on my side, couldn’t run, barely walked, etc… all with severe pain. I started reading online, and all I saw were these terrible stories and the dangerous drugs people had to take. I had a clue that my disease was autoimmune related, because I had an autoimmune disease that caused fluid to gather in my inner ear.

Let first state, I am a totally Western medicine kind of person, and have nothing to gain from sharing my experience. The only thing I hope is that one person can gain freedom from pain like I have.

My research led me to the Paleo, auto immune protocol diet. It is a tough diet, and I lost a lot weight at first (too much). The good news is the diet lets you add things so that you can figure what your triggers are. I was very strict for the first 4 to 6 weeks. I now cheat all the time, but go back on a less strenuous version of it when I begin to feel minor symptoms. The great news is that my blood tests are amazing (I had high triglycerides, low good cholesterol, etc.) I am no expert, not a doctor, but just someone who has felt guilty by not sharing what has helped me.

I wish you all no pain, and a full recovery. take care, Doron

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That is freaky….I was just thinking yesterday about trying this.

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@lisas444

Bill: This is not necessarily an auto-immune disease. It can be attributed to it BUT it also can happen from abdominal trauma, peritonitis, sepsis, etc., multiple abdominal surgeries, etc. There are different stages with it. We have a great group with ages ranging from 17 months old to 70 years old and approx 85 in our group – with many being in their 20-40’s. My daughter was 14. Have they done a biopsy yet? Diagnosed with scans? CT? Biopsy? please feel free to PM me.

Lisa

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Just so people can see this when coming here – but as of 8/12/15 – we now have 124 in our support group all with SM and/or MP. Contact me for info if you’re interested and I can get your info and get you added in! We’re about to be listed with NORD shortly as well. Thx. Lisa (mom of kiddo with SM diag. age 14 and now age 22)

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@lisas444

Bill: This is not necessarily an auto-immune disease. It can be attributed to it BUT it also can happen from abdominal trauma, peritonitis, sepsis, etc., multiple abdominal surgeries, etc. There are different stages with it. We have a great group with ages ranging from 17 months old to 70 years old and approx 85 in our group – with many being in their 20-40’s. My daughter was 14. Have they done a biopsy yet? Diagnosed with scans? CT? Biopsy? please feel free to PM me.

Lisa

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Hey Lisa, you mean the group is? How soon do you think that will happen? My ssa hearing is on sept 18th and it couldn’t hurt to show the alj that!! Hope you and ms Mac are doing okay! Wish me luck on my hearing! I’m just on pain meds now, fentanyl 25 and hi singla 30.(straight time release hydrocodone.
Mark

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@lisas444

Bill: This is not necessarily an auto-immune disease. It can be attributed to it BUT it also can happen from abdominal trauma, peritonitis, sepsis, etc., multiple abdominal surgeries, etc. There are different stages with it. We have a great group with ages ranging from 17 months old to 70 years old and approx 85 in our group – with many being in their 20-40’s. My daughter was 14. Have they done a biopsy yet? Diagnosed with scans? CT? Biopsy? please feel free to PM me.

Lisa

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Mark – yes, our group over there with be listed with NORD shortly.  Finishing up with what i need to do for them!  🙂  Lisa

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The information you’ve received is a little different from what I have learned. My understanding is that the medical community does not know what causes SM. Some think it may be an autoimmune disorder, some think it may be caused by a virus or bacterium, and there used to be a theory that it co existed with cancer but that is no longer a dominant theory. But the consensus of medical sites I’ve seen and my own doctor is that the cause is unknown (hence one of the names, idiopathic sclerosing mesenteritis). So I am not sure you’re atypical.

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Recently I have noticed a vibrating sensation in my chest sometimes it feels like a swooshing sound or a vibrating cell phone this started this month August. I had four stents replaced due to 99% blockage, could one of the tents have moved or erupted? the sensation doesn’t go away, I am in a very stressful situation, I am raising my 10yr old grandson whom has a strong character and very defiant. He
has his grandfathers character, could it just be stress? I personally don’t think so what kind of tests should I have done to find the problem?

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I just got diagnosed with mp last night at er after a ct scan. This pain is beyond horrific. I sent you an email to join the support group. Thank you

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Hello. After 2 terrible days of a fever that would not go away and terrible back and stomach pain I went to the ER. After hours of blood tests, urine tests and a CT scan they diagnosed me with mp. The Dr scared the crap out of me because she said that this disorder a lot of the time it’s common to have lymphoma. But she said don’t worry because my blood tests came up clear. My regular Dr won’t be in until tomorrow. I’m just freaking out. My husband and I have only been married for a year and a half and were starting to try and conceive and I’m scared this will prevent me from getting pregnant. I would love to join the support group if possible. Thanks everyone!

Jen

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Hello,
It is so comforting to find this information. I was diagnosed with mesenteric panniculitis last week. After three bouts ( 5 hours each) of abdominal pain in two weeks I saw my internist who sent me for a CT. I should have gone to the ER, but that’s too long a story. I have now been referred to a local gastroenterologist, but I am not hopeful. Is there anyone in the Boston area that has any knowledge of this? I am a 68 year old female and in relatively good health…or so I thought!
Peg

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Hi all 44 old male living in Weymouth Dorset united kindgom was fairly fit last year running upto 25 miles a week in the gym and all was going fairly well, feb/march this year had debilitating abdominal pains lack of energy and not wantig food feeling sick was admited to hospital for a week got out had loads of blood tests scans follow ups nothing found local gp’s basically didn’t know what to do and dismissed me which made me feel awful, the pain lasted for 6 weeks or so and then came back abbout 17 weeks ago, worse this time though to the point i was hospitalised for 13 days pcb pain fentinol relief, oramorph, tramadol, oycodone loads of pain killers and laxatives laparoscopy perfomed xrays bloods and then a CT which showed wait for it Mesenteric Panniculitis with a secondary diagnosis of diverticulitis left hospital after 13 days on steriods for 8 weeks reducing 5mg per week 8 tramadol a day 8 paracetamol oxycodone 20g twice a day and liquid to top up every 4 hours as well as laxatives, I havent eaten a proper meal in almost 5 months the smell of food makes me want to vomit and am sick if i do eat also get severe pain in the stomach and bowels have been on fortijuice and fortisip liquid drinks for calories and intake as well as yoghurts and energy drinks, have been off of work for 8 weeks and not getting paid, not sure how long the pain is gonna last for, my gastro specialist didnt see me once when i was in hospital.
not sure where to go from here really have been told it’s not cureable and could come and go as it likes,as well as IBS and reflux which i have had for about 12 years i have had testicular cancer 7 years ago and a bladder and prostrate op which has left me partially incontinent and now more so as i have a catheter in as i couldn’t pee when i was in so much pain, not sure when the catheter is due to come out. bowels not good because of the liquid diet and have frequent accidents and this week cotracted a urine infection on top of everything else.

just wanted to say hi to everyone and if anyone has any ideas or comments or questions please feel free to contact me

follow up apointment booked for the 22nd december gastro doctor but any help in the meantime would be very much appreciated as i could do with some answers so i can try and get this under control

kind regards

peter

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