1. < Digestive Health

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.

jimmymac | @jimmymac | Jul 1, 2014
In reply to @angel11 "I was also just diagnosed with Mensenteric Panniculitis. I am 38, female with a history of..." + (show)
@angel11

I was also just diagnosed with Mensenteric Panniculitis. I am 38, female with a history of abdominal pain and issues. Mine was also found accidently on a catscan with Iv Contrast. My doctor was also looking for an Inguinal Hernia that was found during a lapro procedure 4 years ago. I am very fatigued, wake up with hot red face, blood in stool, nausea, most of all, abdominal pain. My doctor started me on 40 mg of steroids and I am to see a GI specialist in a few days. Nothing ever showed in my bloodwork prior to the catscan. As this is such a rare condition, I am very concerned about underlying diseases. How do you even know what stage your in? What other conditions will they check for? Is this an auto immune disease?

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I don\'t know much about this disease, I tried to do my research but their isn\'t much written about it. At least they gave it a name and I have a direction to go on. I cant tell you how frustrating it was to go to doctors and have them tell me they could find nothing. My first symptoms appeared when I was 21 years old and I dealt with it almost on a daily basis. I drank enough Mylanta to fill a tractor trailer truck, it was the only temporarily relief I could find. now Im 58 and my life has had many limitations. Physical stress on my abdomen causes different levels of pain, nausea and periods of confusion. Im 6 ft tall weigh 200 pounds and work construction, I have to struggle to get through a typical day. Im learning to forecast flare ups before they start. I wish there was a magic pill I could take to feel better. I stopped talking about it years ago because no one ever believed me, I just went on with my life. When I was hospitalized 4 years ago they<br />
finally diagnosed me, It peaked my interested to find out all I could about my infliction, best luck to you<br />

REPLY
Mari | @marip | Jul 2, 2014
In reply to @markmor456 "Been recently diagnose with meseteric panniculitis 2 months ago been dealing with it since Oct 2013.looking..." + (show)
@markmor456

Been recently diagnose with meseteric panniculitis 2 months ago been dealing with it since Oct 2013.looking for input,
Thanks

Jump to this post

I was diagnosed last year with abdomen pains. Had cat scan done and was told by a GI doctor I had mesenteric panniculitis. I still don't know what caused it. I do have eczema and diverticulosis. I didn't ask my doctor if he thought if either of these conditions can be the cause.

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MarkM | @markmor456 | Jul 2, 2014
In reply to @markmor456 "Been recently diagnose with meseteric panniculitis 2 months ago been dealing with it since Oct 2013.looking..." + (show)
@markmor456

Been recently diagnose with meseteric panniculitis 2 months ago been dealing with it since Oct 2013.looking for input,
Thanks

Jump to this post

Good Evening, thank you so much on the web site of sclerosing. I can't get enough information.
I will be coming soon to Mayo clinic in Rochester.

Thanks

REPLY
Erin11 | @angel11 | Jul 7, 2014
In reply to @angel11 "I was also just diagnosed with Mensenteric Panniculitis. I am 38, female with a history of..." + (show)
@angel11

I was also just diagnosed with Mensenteric Panniculitis. I am 38, female with a history of abdominal pain and issues. Mine was also found accidently on a catscan with Iv Contrast. My doctor was also looking for an Inguinal Hernia that was found during a lapro procedure 4 years ago. I am very fatigued, wake up with hot red face, blood in stool, nausea, most of all, abdominal pain. My doctor started me on 40 mg of steroids and I am to see a GI specialist in a few days. Nothing ever showed in my bloodwork prior to the catscan. As this is such a rare condition, I am very concerned about underlying diseases. How do you even know what stage your in? What other conditions will they check for? Is this an auto immune disease?

Jump to this post

thank you very much! the gastroenterologists are doing a full workup, I have been dianosed with this disease and it is so iso rare, they have never even treated anyone with it, they are trying to rule out everyting else. So far, everything from Autoimmune, bacterial, and carcinoids, ect have been ruled out. I am having an MRI this week of my small intestine. My big concern is their lack of knowledge and trying to blame my symptoms on something other just because this is a rare disease. The catscan clearly showed and diagnosed this disease. However, guess I will know more after the mri. I continue to have bouts of diareah, pain in my left groin and abdominal area, nausea, fatique, flushed, bloating. I have been on the steroids for about 2 weeks now. I think they are helping a little. My gastro said since there was no big improvement in a week, that it prob wasnt this disease. Studies show that it could take months for the inflammation to decrease, not a week. I guess my next question is, where do I go for treatment? I live in Pennsylvania, if I have to travel I will.

REPLY
Erin11 | @angel11 | Jul 7, 2014
In reply to @angel11 "I was also just diagnosed with Mensenteric Panniculitis. I am 38, female with a history of..." + (show)
@angel11

I was also just diagnosed with Mensenteric Panniculitis. I am 38, female with a history of abdominal pain and issues. Mine was also found accidently on a catscan with Iv Contrast. My doctor was also looking for an Inguinal Hernia that was found during a lapro procedure 4 years ago. I am very fatigued, wake up with hot red face, blood in stool, nausea, most of all, abdominal pain. My doctor started me on 40 mg of steroids and I am to see a GI specialist in a few days. Nothing ever showed in my bloodwork prior to the catscan. As this is such a rare condition, I am very concerned about underlying diseases. How do you even know what stage your in? What other conditions will they check for? Is this an auto immune disease?

Jump to this post

Thank you. I did reply above. Its very difficult, I am also
trying to figure out if there is anyone out there who knows how to treat this!!!!! Do you take steriods? This is really the only place right now I feel I can go where someone can relate to this. I hope you are feeling better. I will be sharing any information I can find out about this. Thank you for your support!!!

REPLY
LS4 / Lisa Schwart Tulsa Oklahoma (FB page) | @lisas444 | Jul 30, 2014
In reply to @angel11 "I was also just diagnosed with Mensenteric Panniculitis. I am 38, female with a history of..." + (show)
@angel11

I was also just diagnosed with Mensenteric Panniculitis. I am 38, female with a history of abdominal pain and issues. Mine was also found accidently on a catscan with Iv Contrast. My doctor was also looking for an Inguinal Hernia that was found during a lapro procedure 4 years ago. I am very fatigued, wake up with hot red face, blood in stool, nausea, most of all, abdominal pain. My doctor started me on 40 mg of steroids and I am to see a GI specialist in a few days. Nothing ever showed in my bloodwork prior to the catscan. As this is such a rare condition, I am very concerned about underlying diseases. How do you even know what stage your in? What other conditions will they check for? Is this an auto immune disease?

Jump to this post

I have a child with SM. Very aggressive case unfortunately. Live in Oklahoma.

REPLY
LS4 / Lisa Schwart Tulsa Oklahoma (FB page) | @lisas444 | Jul 30, 2014
In reply to @angel11 "I was also just diagnosed with Mensenteric Panniculitis. I am 38, female with a history of..." + (show)
@angel11

I was also just diagnosed with Mensenteric Panniculitis. I am 38, female with a history of abdominal pain and issues. Mine was also found accidently on a catscan with Iv Contrast. My doctor was also looking for an Inguinal Hernia that was found during a lapro procedure 4 years ago. I am very fatigued, wake up with hot red face, blood in stool, nausea, most of all, abdominal pain. My doctor started me on 40 mg of steroids and I am to see a GI specialist in a few days. Nothing ever showed in my bloodwork prior to the catscan. As this is such a rare condition, I am very concerned about underlying diseases. How do you even know what stage your in? What other conditions will they check for? Is this an auto immune disease?

Jump to this post

I have a daughter with SM and we are in Oklahoma. She was diagnosed in 2008 at age 14. We do have an amazing support group that is private and there are 57 in there as of last week. All variations of SM and MP if you're interested. I can send you the info to link you in if you want! 🙂 She's had 17 abdominal surgeries, multiple bowel obstructions over and over, she is TPN dependent as well as a few of the others on our group. Some have occasional flare ups, some have little issues, some are severe. We're all there though! 🙂

L

REPLY
LS4 / Lisa Schwart Tulsa Oklahoma (FB page) | @lisas444 | Jul 30, 2014
In reply to @angel11 "I was also just diagnosed with Mensenteric Panniculitis. I am 38, female with a history of..." + (show)
@angel11

I was also just diagnosed with Mensenteric Panniculitis. I am 38, female with a history of abdominal pain and issues. Mine was also found accidently on a catscan with Iv Contrast. My doctor was also looking for an Inguinal Hernia that was found during a lapro procedure 4 years ago. I am very fatigued, wake up with hot red face, blood in stool, nausea, most of all, abdominal pain. My doctor started me on 40 mg of steroids and I am to see a GI specialist in a few days. Nothing ever showed in my bloodwork prior to the catscan. As this is such a rare condition, I am very concerned about underlying diseases. How do you even know what stage your in? What other conditions will they check for? Is this an auto immune disease?

Jump to this post

We have a girl in our group in Pennsylvania . she's been inpatient the last few months since diagnosis . ...I'd love to get you in touch with her if you like.

REPLY
LS4 / Lisa Schwart Tulsa Oklahoma (FB page) | @lisas444 | Jul 31, 2014
In reply to @shareie "I am in pain and in the er every 2 months..... moraphine,Nausea rx, prednisone...given at er..." + (show)
@shareie

I am in pain and in the er every 2 months..... moraphine,Nausea rx, prednisone...given at er t hen continue prednisone 5 days...I'm auto immune , still trying to figure out what involves and no one Dr wise can answer any questions...my intestines swell and I hurt base d during attacks which last until I get prednisone etc.....I am tired of routine uncontrollable routine I have every two months....what's your advice and is this similarity to anyone? Have Been told my condition is very rare

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Hi there, saw your posts on here about SM and MP. We have a support group with 57 members if you're interested. It's a private group to be able to share, support, receive support, doc info, meds, etc. I'm a mom with a pediatric kid with SM. If you write back I can give you the contact info if you'd like. No, it's not the yahoo group either. That site has information in files, but not a very good support based group and of sharing and talking. We have 57 members on ours!

REPLY
2 replies
LS4 / Lisa Schwart Tulsa Oklahoma (FB page) | @lisas444 | Jul 31, 2014
In reply to @angel11 "I was also just diagnosed with Mensenteric Panniculitis. I am 38, female with a history of..." + (show)
@angel11

I was also just diagnosed with Mensenteric Panniculitis. I am 38, female with a history of abdominal pain and issues. Mine was also found accidently on a catscan with Iv Contrast. My doctor was also looking for an Inguinal Hernia that was found during a lapro procedure 4 years ago. I am very fatigued, wake up with hot red face, blood in stool, nausea, most of all, abdominal pain. My doctor started me on 40 mg of steroids and I am to see a GI specialist in a few days. Nothing ever showed in my bloodwork prior to the catscan. As this is such a rare condition, I am very concerned about underlying diseases. How do you even know what stage your in? What other conditions will they check for? Is this an auto immune disease?

Jump to this post

Hi there, I saw your posts on here about SM and MP. We have a support group with 57 members if you're interested. It's a private group to be able to share, support, receive support, doc info, meds, etc. I'm a mom with a pediatric kid with SM. Please write back I can give you the contact info if you'd like. No, it's not the yahoo group either. That site has information in files, but not a very good support based group and of sharing and talking. We have 57 members on ours and unbelievable communication and support throughout ALL the members!!

REPLY
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