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

@hopeful33250

Have you addressed this with your doctor, @kimh? Perhaps others in the group will share what meds work well for them.

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Yes, I have been told that some people have a great deal of difficulty coming off steroids. I'm only on 5 mg daily, but can't seem to get off them! We are waiting for me to reach full remission (no pain pills for 4-6 weeks) before fiddling around with the dosage again.

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Thanks! I'm writing it down! I go to see my specialist on Thursday!

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@kimh

I was in remission for two years and then it reared it's ugly head again! Currently, I have been battling this relapse for two years. I'm having great difficulty getting off the prednisone, though I am on a low dose. Most people here would suggest to keep stress levels low and I would agree 100%!

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Could you share what you do to keep stress levels, low, @kimh?

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Well, I am currently on sick leave from my job; though that may end by April. I have tried to keep things calm in my home, which includes routine. Not rut, but routine. I have given myself a few daily jobs around the house that are non-negotiable, no matter how bad I am feeling. I stopped wearing a watch, greatly reduced listening to the news (specifically politics!) and stopped watching the weather channel. In place of what was my life, I read (who knew mysteries would be so enjoyable?), I (try to!) paint landscapes and in the winter have taken up sewing and knitting. I am quite pathetic at the last two, but they do keep me occupied lol. Because my doctor has not given me the go-ahead to go back to yoga (which I love!), I take some time daily just to do some meditative breathing. If I am up to it and the weather permits (I live in Canada), I go for a walk. Usually the walks are reserved for when my husband is home. It's nice to have the company. Finally a lot of 'drama' or sweating the small stuff has ended. Before this illness, day would drift into day, month into month, season into season. I was so busy that I think I lost sight of a few things. This illness has forced me to reevaluate needs and wants. I hope my experience helps!

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How wonderful, @kimh. I agree that mysteries are just great reads!!

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It beats the newspaper lol!

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@cconnors

I went to the Mayo in MN last June. I saw Dr. Pardi. I was originally diagnosed 11 years ago. I was having upper right abdominal pain and tightness. I had gallbladder test and colonoscopy to rule out issues there. It showed up on a CT scan. I was referred to a surgeon, who took biopsies to rule out cancer. After seeing several GI docs who admitted that they "were flying by the seat of their pants", I decided to be proactive. I would have a flare up once or twice a year. I was a 40 year old female and didn't seem to fit the mold of being a 60 year old male! haha. I took all of my CT scans with me to the mayo along with the surgical notes and biopsy results. I have had multiple CT scans since my original diagnosis. Parking at the Mayo was very easy, so was navigating the hospital. I dropped off all of my medical docs at my appointment time and they had me return a few hours later. I met with Dr. Pardi and he confirmed that I did have MP. He was optimistic that my CT scans had not changed much over the past 11 years. He said that he hadn't really met someone who has had it this long without it progressing. Knock on wood! He dictated a letter to me that I can give my local GI on what actions and medications I should try with flare ups and if they happen more frequently, I should return to see him. He was very nice and informative. My appointment was not rushed at all. Because I had so much of my medical docs, I only had to be seen that day. I wish you luck and if you have any other questions, please don't hesitate to ask.

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I am envious! Wish I could see him. I haven’t seen a knowledgeable Doctor since being diagnosed. I live far north in Canada and getting a recent CT just seems too much. My Doctor pretends I’m crazy and there is no such disease. 🤪😆

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@kimh

Well, I am currently on sick leave from my job; though that may end by April. I have tried to keep things calm in my home, which includes routine. Not rut, but routine. I have given myself a few daily jobs around the house that are non-negotiable, no matter how bad I am feeling. I stopped wearing a watch, greatly reduced listening to the news (specifically politics!) and stopped watching the weather channel. In place of what was my life, I read (who knew mysteries would be so enjoyable?), I (try to!) paint landscapes and in the winter have taken up sewing and knitting. I am quite pathetic at the last two, but they do keep me occupied lol. Because my doctor has not given me the go-ahead to go back to yoga (which I love!), I take some time daily just to do some meditative breathing. If I am up to it and the weather permits (I live in Canada), I go for a walk. Usually the walks are reserved for when my husband is home. It's nice to have the company. Finally a lot of 'drama' or sweating the small stuff has ended. Before this illness, day would drift into day, month into month, season into season. I was so busy that I think I lost sight of a few things. This illness has forced me to reevaluate needs and wants. I hope my experience helps!

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I sure agree Kimh -a routine but no drama. I am retired now but taught in reform school, a very large prison,a psychiatric hospital and crazy kids ❤️ In jr and sr high school. But state of mind was so important. Calming, to bed early and positive self talk essential. I travel a great deal and eating bland can be a challenge. Be well-thanks for sharing!

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@pcfromfm

I sure agree Kimh -a routine but no drama. I am retired now but taught in reform school, a very large prison,a psychiatric hospital and crazy kids ❤️ In jr and sr high school. But state of mind was so important. Calming, to bed early and positive self talk essential. I travel a great deal and eating bland can be a challenge. Be well-thanks for sharing!

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I am a teacher too! I love my job, but there is a lot of stress for sure! And the other thing that goes against my nature is the time! Every minute seems as though it is vital! The first thing to go was my watch!

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@pcfromfm

I am envious! Wish I could see him. I haven’t seen a knowledgeable Doctor since being diagnosed. I live far north in Canada and getting a recent CT just seems too much. My Doctor pretends I’m crazy and there is no such disease. 🤪😆

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I won't even suggest that you change doctors because I know how hard it is (especially) when you are in the north. Can you at least refer him/her to our site? At least to see what medications to try? How frustrating for you!

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@hopeful33250

Hello All:
As @billindc mentioned his Mayo doctor's name, I thought you might find this information helpful. It is an introduction to Dr. Pardi and gives some helpful information about his research and experience.

https://www.mayo.edu/research/faculty/pardi-darrell-s-m-d/bio-00086058?_ga=2.259229898.1521299914.1563835831-1221957091.1534862430

Here is a video about a patient at Mayo who had a similar problem. As she will report, Dr. Pardi was also her doctor as well.

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Wow – she has such a great attitude! It is nice to be able to have a specific disease with a name, etc; but I found this video great, and anyone, probably most here, are really dealing with a similar type of issue.. chronic abdominal pain/problems that maybe aren't going to go away.

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@cconnors

I went to the Mayo in MN last June. I saw Dr. Pardi. I was originally diagnosed 11 years ago. I was having upper right abdominal pain and tightness. I had gallbladder test and colonoscopy to rule out issues there. It showed up on a CT scan. I was referred to a surgeon, who took biopsies to rule out cancer. After seeing several GI docs who admitted that they "were flying by the seat of their pants", I decided to be proactive. I would have a flare up once or twice a year. I was a 40 year old female and didn't seem to fit the mold of being a 60 year old male! haha. I took all of my CT scans with me to the mayo along with the surgical notes and biopsy results. I have had multiple CT scans since my original diagnosis. Parking at the Mayo was very easy, so was navigating the hospital. I dropped off all of my medical docs at my appointment time and they had me return a few hours later. I met with Dr. Pardi and he confirmed that I did have MP. He was optimistic that my CT scans had not changed much over the past 11 years. He said that he hadn't really met someone who has had it this long without it progressing. Knock on wood! He dictated a letter to me that I can give my local GI on what actions and medications I should try with flare ups and if they happen more frequently, I should return to see him. He was very nice and informative. My appointment was not rushed at all. Because I had so much of my medical docs, I only had to be seen that day. I wish you luck and if you have any other questions, please don't hesitate to ask.

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I don't have your diagnosis, but just spent 2 separate weeks at Mayo in Rochester this summer (just returned from second), and I have to agree. Originally my parents were coming with me, but couldn't at the last minute so I went by myself… well with my dog 🙂 . I was really scared, but it ended up being so easy. The scheduling person for my GI doc had all of my tests and consults set up. Once I parked, I never used my car all week. I stayed at the Kahler Inn and Suites, right on the campus and across the street from the Gonda Building, where the GI dept is. Radiology was at the building right across the street. I could literally walk out the door and be at my appointments in 10 – 15 minutes – no driving, no parking, no stress. Everyone was wonderful.

My dog kind of became the "therapy dog" for all the patients staying at the hotel (he is a very sweet, well behaved, senior dog). Whenever we'd go out for a walk, everyone would be happy to see him. One lady said "I'm happy now that I've seen Scooby". It was nice that the hotel was pet friendly and I could have him with me. There are so many beautiful little garden areas and fountains on the Mayo Campus, in the evening we would walk to one and just sit and relax. I called it my "spa vacation".

So, going back the second time was really easy! I would recommend it to anyone. I feel I've gotten a good start and some good information! Unfortunately, it doesn't seem the doctor I was assigned to understands my problems or knows how to treat them, so I am going to move to a center that has specialists in that area, but I loved my experience at Mayo!

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@pcfromfm

Hi elle1233, does seem like they are discovering much about this organ. I am thankful for sure. Please feel free to share with us. Although we have some issues/concerns that are similar, many seem very mysterious. As kimh said earlier-we learn by sharing. 👍❤️

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Thank you PC.. well, maybe I should put this in a thread. I have had chronic but varying in intensity abdominal pain for 11 yrs, since a gallbladder surgery, many tests, no solution. At Mayo, a CT scan with contrast showed a twisted mesentery, and I was very excited, because it seemed to fit with my pain, and it's bizarre coming and going (apparently it moves around a bit). And, my small intestine motility is very slow, and it feels like something is "blocked".

Anyway, long story short; my Dr. says it can't be the problem because my small intestine itself is not blocked or twisted. I've done some research and found a doc from Ireland who spent time at Cleveland Clinic, who focuses on the mesentery, and have been doing a lot of reading. There are a lot of nerves and blood vessels in this newly deemed organ :), so it seems to me that perhaps if it's twisted, that could impinge on some of those things and cause pain, even if the small bowel is not affected. I also "met" one patient online who had a diagnosis of twisted mesenteric root and said he has had abdominal pain his whole life. (my Dr. says it would be an acute, emergency thing, and mine has been long term, also).

I don't want to knock the doc (lol that rhymed), but he is a Fellow (in training) and young, and as you say, it seems they are really just starting to look into the mesentery as an organ, let alone the problems it might create. It seems possible to me that there could be lower grade, chronic problems that could exist from it being twisted up… and if there are 2 of us.. maybe there are more.

Right now I can't do anything, even though the Dr. rules it out, until I have an answer, it's still on my back burner. I thought I might send my info to the Irish Dr. and see what he thinks. Right now, they say, well, it sometimes is seen in people who don't have pain. Anyway, I thought it might be interesting to find out if there are others with such a finding who have abdominal pain with no cause.

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Hi @elle, who is the Irish doc?

Liked by PCfromFM

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@elle1233

Thank you PC.. well, maybe I should put this in a thread. I have had chronic but varying in intensity abdominal pain for 11 yrs, since a gallbladder surgery, many tests, no solution. At Mayo, a CT scan with contrast showed a twisted mesentery, and I was very excited, because it seemed to fit with my pain, and it's bizarre coming and going (apparently it moves around a bit). And, my small intestine motility is very slow, and it feels like something is "blocked".

Anyway, long story short; my Dr. says it can't be the problem because my small intestine itself is not blocked or twisted. I've done some research and found a doc from Ireland who spent time at Cleveland Clinic, who focuses on the mesentery, and have been doing a lot of reading. There are a lot of nerves and blood vessels in this newly deemed organ :), so it seems to me that perhaps if it's twisted, that could impinge on some of those things and cause pain, even if the small bowel is not affected. I also "met" one patient online who had a diagnosis of twisted mesenteric root and said he has had abdominal pain his whole life. (my Dr. says it would be an acute, emergency thing, and mine has been long term, also).

I don't want to knock the doc (lol that rhymed), but he is a Fellow (in training) and young, and as you say, it seems they are really just starting to look into the mesentery as an organ, let alone the problems it might create. It seems possible to me that there could be lower grade, chronic problems that could exist from it being twisted up… and if there are 2 of us.. maybe there are more.

Right now I can't do anything, even though the Dr. rules it out, until I have an answer, it's still on my back burner. I thought I might send my info to the Irish Dr. and see what he thinks. Right now, they say, well, it sometimes is seen in people who don't have pain. Anyway, I thought it might be interesting to find out if there are others with such a finding who have abdominal pain with no cause.

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Morning @elle1233 -sure sounds reasonable to me. It’s good to know there is someone else out there who may share your issues. I have come to understand that as crazy as we have felt, how frustrated our pain is to explain or understand -the more we try to share our experiences-the better it all is. We may be few but we are not alone. Thank you for sharing with us. Your experience at the Mayo sounds good. I hope they discover and pinpoint to help you feel better soon. I understand “years of pain” and your persistence to find out is remarkable.👍❤️Please keep us in the loop!

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