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

Bill, good luck with this disease. I 56, diagnosed in 2010 with s/m. Have tried all the drugs that most every one gets treated with but known worked for me! I’m on pain management using fentanayl patches and taking hi dosages of hydrocodone for pain. I had to quite my longtime job in 2012 because I couldn’t function. My life has completely changed because most of my days I’m either in bed or recliner with a heating pad!! I’m so depressed that I don’t know what I’m going to do! I have filed for SSD but got turned down the first 2 times, now waiting on a hearing date. I do hope you do okay!! Good luck

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Hi Bill. I live in Australia and was diagnosed 5 yrs ago. I have severe attacks every 6 months. Treated with 40g Prednisolone reducing by 5g every 5 days. Also high doses of Oxycodone for pain. I am learning to live with this but there is not much info out there about future problems if any. No ongoing diseases but history of stomach surgery which seems to have some relevance from what I have researched. Hope this helps.

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My husband was diagnosed with mesenteric Panniculitis in 2010 after many decades of visits to GI doctors and hospitals. He had a small bowel obstruction that showed severe inflammation of his mesestery layer. It was first treated with prednisone and liquid diet. The mesentery layer was greatly reduced with 6 months of steady treatment. But since then he has had two more episodes of small bowel obstructions. We are unaware of what triggers such events but we do know that hard vigorous labor aggravates the condition, causung pain, discomfort, insomnia, vision problems, acid indigestion ( now treated with omeprazole. )
Early diagnosis could find nothing and patient was told to seek help from psychiatrist and not a gastric doctor. Decades later MRI results showed increased inflammation in mesentery and diagnosis is mesentery panniculitis. With very little medical information of this very rare condition we are at a loss to finding doctors to treat this disease. Is there a doctor somewhere in New York who can help us.

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@jimmymac

My husband was diagnosed with mesenteric Panniculitis in 2010 after many decades of visits to GI doctors and hospitals. He had a small bowel obstruction that showed severe inflammation of his mesestery layer. It was first treated with prednisone and liquid diet. The mesentery layer was greatly reduced with 6 months of steady treatment. But since then he has had two more episodes of small bowel obstructions. We are unaware of what triggers such events but we do know that hard vigorous labor aggravates the condition, causung pain, discomfort, insomnia, vision problems, acid indigestion ( now treated with omeprazole. )
Early diagnosis could find nothing and patient was told to seek help from psychiatrist and not a gastric doctor. Decades later MRI results showed increased inflammation in mesentery and diagnosis is mesentery panniculitis. With very little medical information of this very rare condition we are at a loss to finding doctors to treat this disease. Is there a doctor somewhere in New York who can help us.

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You need to see a gastroenterologist and early medication with high dose of Prednisolone 40g. I take 40g or until pain goes then reduce dose by 5g every 5 days. If pain comes back need to go back and start again. I am in West Australia Perth and my specialist is Dr Sharon Masel at Mt Lawley St Annes Hospital. Hope this info helps.

Sent from Samsung Mobile

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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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@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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Hi @angel11. I’m sorry to hear about your recent diagnosis. Here is some information on sclerosing mesenteries, also known as mesenteric panniculitis, that might be helpful for you: http://www.mayoclinic.org/diseases-conditions/sclerosing-mesenteritis/basics/definition/con-20037148

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@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
finally diagnosed me, It peaked my interested to find out all I could about my infliction, best luck to you

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@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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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.

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@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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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!!!

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

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@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 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

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@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.

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