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.

fernandoparce | @fernandoparce | Dec 28, 2017

Does MP mess with your colon from the constipation

REPLY
fernandoparce | @fernandoparce | Dec 28, 2017
In reply to @tarad "First of all, MANY thanks to @vdouglas, for finding my original post in the auto immune..." + (show)
@tarad

First of all, MANY thanks to @vdouglas, for finding my original post in the auto immune forum here on TMC connect site. I'm so relieved (as morbid as that is to say) to see that I really am NOT alone.... I'll preface by saying there is a very real possibility I may rely heavily on everyone's experiences through this in this forum.

I feel like I’m slowly going crazy… I had a hysterectomy May 9, 2017. By August, I was diagnosed with mesenteric panniculitis that was “accidentally discovered” when I continued having abdominal pain after surgery (my gyno naturally thought it was my ovaries; CT scans done and radiologist found the MP). I was sent to a surgical oncologist that was said to be a “GI guru” and have extensive knowledge in all things “weird and rare”. He was rather dismissive about it all as, based on my lab work my gyno had done, there was nothing that made him think there was a concern for cancer. Just brushed it off as an “annoyance issue”, that the pain could stay for a month or a year, but he would give me Mobic to help with the inflammation and it should eventually resolve itself (standard treatment for MP is through steroids, but I have anaphylactic reactions to all steroids, and I’m kinda trying to NOT die….). I’m a month in on the Mobic, the flare ups in pain are more frequent with the pain being more and more intense. Nausea has also started to set up and my appetite is waning, at best, as most of the time, the thought of food makes me sick. My PCP and gyno weren’t pleased with the consult I had from oncol. One has ordered a repeat CT to be done in a couple of months to monitor progression/improvement. The other has referred me to gastro and hematology. I had a positive ANA and a positive double strand DNA. My spleen has been consistently mildly enlarged on the past few CT’s I’ve had done. Research material on this is limited. I feel like I’m in a snowglobe, being shaken up with all these doctors, throwing around words like “necrosis” and “restricted blood flow” and “cancer” and referral after referral. I’m frustrated and tired of “hurry up and wait”….

What's your insight on what I'm looking at long term?? I've never had anything chronically, so I'm lost on what to expect. My PCP is very literally clueless. The "GI guru" has, in effect, blown me off - I called seeking helping when the Mobic failed to work. All I've gotten was a text message from the pharmacy saying my Rx was ready (apparently, he just called in something new without talking with me about what I had going on). Today, I got a call from his office saying they were going to refer me to a gastro but saw that I was already scheduled and wished me best of luck. Still have not spoken to him. Glad my intestinal tract hasn't shriveled up and fallen out waiting for him to get back with me (sarcasm).

Hit me with whatever info you've got. Books. Articles. Suggestions on diet modifications. Meds you've tried that were successful. Anyone tried anything holistically? I am desperately wanting to "get in front of the ball" as best I can - the bad days are BAD. I have two kids to raise, one 16 and one 6. Mommy doesn't have time for debilitating.....

Bless every one of you all!!!!!!! Sending everyone lots of hugs and support from Kentucky!!!!!!

Jump to this post

Why did they do a biopsy and what is that for in kind of new at this and I got MP to and it bad.

REPLY
kimh | @kimh | Dec 28, 2017
In reply to @tarad "First of all, MANY thanks to @vdouglas, for finding my original post in the auto immune..." + (show)
@tarad

First of all, MANY thanks to @vdouglas, for finding my original post in the auto immune forum here on TMC connect site. I'm so relieved (as morbid as that is to say) to see that I really am NOT alone.... I'll preface by saying there is a very real possibility I may rely heavily on everyone's experiences through this in this forum.

I feel like I’m slowly going crazy… I had a hysterectomy May 9, 2017. By August, I was diagnosed with mesenteric panniculitis that was “accidentally discovered” when I continued having abdominal pain after surgery (my gyno naturally thought it was my ovaries; CT scans done and radiologist found the MP). I was sent to a surgical oncologist that was said to be a “GI guru” and have extensive knowledge in all things “weird and rare”. He was rather dismissive about it all as, based on my lab work my gyno had done, there was nothing that made him think there was a concern for cancer. Just brushed it off as an “annoyance issue”, that the pain could stay for a month or a year, but he would give me Mobic to help with the inflammation and it should eventually resolve itself (standard treatment for MP is through steroids, but I have anaphylactic reactions to all steroids, and I’m kinda trying to NOT die….). I’m a month in on the Mobic, the flare ups in pain are more frequent with the pain being more and more intense. Nausea has also started to set up and my appetite is waning, at best, as most of the time, the thought of food makes me sick. My PCP and gyno weren’t pleased with the consult I had from oncol. One has ordered a repeat CT to be done in a couple of months to monitor progression/improvement. The other has referred me to gastro and hematology. I had a positive ANA and a positive double strand DNA. My spleen has been consistently mildly enlarged on the past few CT’s I’ve had done. Research material on this is limited. I feel like I’m in a snowglobe, being shaken up with all these doctors, throwing around words like “necrosis” and “restricted blood flow” and “cancer” and referral after referral. I’m frustrated and tired of “hurry up and wait”….

What's your insight on what I'm looking at long term?? I've never had anything chronically, so I'm lost on what to expect. My PCP is very literally clueless. The "GI guru" has, in effect, blown me off - I called seeking helping when the Mobic failed to work. All I've gotten was a text message from the pharmacy saying my Rx was ready (apparently, he just called in something new without talking with me about what I had going on). Today, I got a call from his office saying they were going to refer me to a gastro but saw that I was already scheduled and wished me best of luck. Still have not spoken to him. Glad my intestinal tract hasn't shriveled up and fallen out waiting for him to get back with me (sarcasm).

Hit me with whatever info you've got. Books. Articles. Suggestions on diet modifications. Meds you've tried that were successful. Anyone tried anything holistically? I am desperately wanting to "get in front of the ball" as best I can - the bad days are BAD. I have two kids to raise, one 16 and one 6. Mommy doesn't have time for debilitating.....

Bless every one of you all!!!!!!! Sending everyone lots of hugs and support from Kentucky!!!!!!

Jump to this post

I had to have surgical biopsy because they wanted to verify that it was MP and rule out cancer. I had been hospitalized for about a week and my inflammations had increased in size from one CT scan to the other. Waiting for the results was a little difficult, but at least we knew that we could rule out cancer. After a few more months, I was sent to the local cancer centre to check for lymphoma markers. I never heard back (which in Canada....no news is good news!).

REPLY
kimh | @kimh | Dec 28, 2017
In reply to @carbxbe8206 "Denia, Good to know, want to check with GI doctor about this drug because I can't..." + (show)
@carbxbe8206

Denia, Good to know, want to check with GI doctor about this drug because I can't steroids. Do you have GERD, acid reflex issues, was wondering if this med with make these issues worse? Thanks for the information.

Jump to this post

What is Mobic?

REPLY
bertbiz | @bertbiz | Dec 28, 2017
In reply to @carbxbe8206 "Denia, Good to know, want to check with GI doctor about this drug because I can't..." + (show)
@carbxbe8206

Denia, Good to know, want to check with GI doctor about this drug because I can't steroids. Do you have GERD, acid reflex issues, was wondering if this med with make these issues worse? Thanks for the information.

Jump to this post

https://www.rxlist.com/mobic-drug.htm
REPLY
Von, Alumni Mentor | @vdouglas | Dec 28, 2017
In reply to @tarad "First of all, MANY thanks to @vdouglas, for finding my original post in the auto immune..." + (show)
@tarad

First of all, MANY thanks to @vdouglas, for finding my original post in the auto immune forum here on TMC connect site. I'm so relieved (as morbid as that is to say) to see that I really am NOT alone.... I'll preface by saying there is a very real possibility I may rely heavily on everyone's experiences through this in this forum.

I feel like I’m slowly going crazy… I had a hysterectomy May 9, 2017. By August, I was diagnosed with mesenteric panniculitis that was “accidentally discovered” when I continued having abdominal pain after surgery (my gyno naturally thought it was my ovaries; CT scans done and radiologist found the MP). I was sent to a surgical oncologist that was said to be a “GI guru” and have extensive knowledge in all things “weird and rare”. He was rather dismissive about it all as, based on my lab work my gyno had done, there was nothing that made him think there was a concern for cancer. Just brushed it off as an “annoyance issue”, that the pain could stay for a month or a year, but he would give me Mobic to help with the inflammation and it should eventually resolve itself (standard treatment for MP is through steroids, but I have anaphylactic reactions to all steroids, and I’m kinda trying to NOT die….). I’m a month in on the Mobic, the flare ups in pain are more frequent with the pain being more and more intense. Nausea has also started to set up and my appetite is waning, at best, as most of the time, the thought of food makes me sick. My PCP and gyno weren’t pleased with the consult I had from oncol. One has ordered a repeat CT to be done in a couple of months to monitor progression/improvement. The other has referred me to gastro and hematology. I had a positive ANA and a positive double strand DNA. My spleen has been consistently mildly enlarged on the past few CT’s I’ve had done. Research material on this is limited. I feel like I’m in a snowglobe, being shaken up with all these doctors, throwing around words like “necrosis” and “restricted blood flow” and “cancer” and referral after referral. I’m frustrated and tired of “hurry up and wait”….

What's your insight on what I'm looking at long term?? I've never had anything chronically, so I'm lost on what to expect. My PCP is very literally clueless. The "GI guru" has, in effect, blown me off - I called seeking helping when the Mobic failed to work. All I've gotten was a text message from the pharmacy saying my Rx was ready (apparently, he just called in something new without talking with me about what I had going on). Today, I got a call from his office saying they were going to refer me to a gastro but saw that I was already scheduled and wished me best of luck. Still have not spoken to him. Glad my intestinal tract hasn't shriveled up and fallen out waiting for him to get back with me (sarcasm).

Hit me with whatever info you've got. Books. Articles. Suggestions on diet modifications. Meds you've tried that were successful. Anyone tried anything holistically? I am desperately wanting to "get in front of the ball" as best I can - the bad days are BAD. I have two kids to raise, one 16 and one 6. Mommy doesn't have time for debilitating.....

Bless every one of you all!!!!!!! Sending everyone lots of hugs and support from Kentucky!!!!!!

Jump to this post

Hello Cindy @cconnors, I would like to add my welcome to the Mayo Clinic Connect. As Colleen posted many of the members, like you, have been living with this disease for quite some time. We understand what you are going through.

I read your post offering us a little bit of your history and I thank you also. Each of us has a similar story to tell so I can relate to your frustration and anxiety as well as the pain that you must be going through.

You have made a good choice to step back and advocate for yourself. It's time to take a deep breath and look at things realistically. I was in pretty much the same position, although I never had the biopsy. In my case, I could see the doctors were not sure what they were dealing with. I knew that I had to find a doctor or facility that understood the disease otherwise they were going to be doing test after test. I'm not suggesting you stop seeing your current doctor but if you are uncertain, the following is what I did.

My research led me to the Mayo Clinic and I made the appointment online. I believe Kanaaz posted a link to the site but just in case you can't bring it up you can go to the upper right corner of this page and click on "Request Appointment". I chose the Mayo Clinic in Rochester because Dr. Darrell Pardi is part of the gastroenterology group at that location. I flew from Las Vegas, Nevada to the Clinic to get the best diagnosis available to me. I can tell you that when your CT scan is viewed at the Mayo Clinic, there is very little guess work. The most important part of diagnosing MP, in my opinion, is having a doctor familiar with mesenteric panniculitis viewing the CT scans then making a diagnosis and prognosis based upon experience rather than guess work.

I know how hard these decisions can be but you should only have to make this decision once.

You have my best wishes and support whatever decision you choose to make.
@vdouglas
Von

REPLY
Von, Alumni Mentor | @vdouglas | Dec 28, 2017
In reply to @judy147 "Looking back I remember in the lat 15 years having episodes where my stomach felt sore..." + (show)
@judy147

Looking back I remember in the lat 15 years having episodes where my stomach felt sore with no other symptoms. I use to say it felt like someone socked me in the gut or like I had been doing hundreds of sit ups or crunches. I wonder if this was the MP. Has anyone else had this. For the past week I have been getting this feeling a lot. Having an MRI enterography on Nov 6. When I went to see my GI doctor I hadn’t really been experiencing too much. But for the past week my stomach has been hurting and I have been slightly nauseated. I can not take steroids and anti inflammatory medications bother my stomach, not sure what other treatments there are for this. Wondering if something I am eating is causing it. Please any input or suggestions appreciated. Suppose to go back to the doctor Dec 5, but I may have to be calling him sooner the way I have been feeling.

Jump to this post

Hello @judy147, I hope you were able to enjoy a wonderful Christmas and I guess you have or will have a nice wedding to prepare for. I hope you are feeling better.
@vdouglas
Von

REPLY
Von, Alumni Mentor | @vdouglas | Dec 28, 2017
In reply to @poppy73 "Has anyone experimented with high doses of fish oil?" + (show)
@poppy73

Has anyone experimented with high doses of fish oil?

Jump to this post

Hi @poppy73, I just wanted to give you a little bit more feedback on the fish oil. I have been on 2,400 mg since our last post and just had a blood test Tuesday. I have not increased the dosage until I confirm the exact amount with my doctor.

I have not noticed any reduction in joint pain or what little abdominal/flank pain I have, but I have notice an increase in energy. Could be a placebo effect or just getting more sleep but it is there for whatever reason. We'll see what blood test numbers reveal.

Best wishes to you.
@vdouglas
Von

REPLY
kimh | @kimh | Dec 29, 2017

Hi everyone,
I have been keeping a detailed diary of my activities, pain level, diet and weather for the past week and have noticed something that I had been suspecting for some time. When there is a low pressure weather system coming in, my discomfort level from the MP seems to increase. Has anyone else noticed this correlation? My pains from MP are on my lower right abdominal quadrant and since my fall in 2014 (what I believe to be the trigger for everything!), my right knee and my right elbow have become so sore when a low pressure system moves into the area that it feels as though someone has taken a hammer and smashed my elbow and my knee cap. Since the fall, I have had to add a rheumatologist to my team of specialists! I find it odd that all of these maladies seem to be occurring on the right side of my body (though the brunt of my fall occurred on my lower left side of my back!) and all occurring after the trauma of the fall! I am beginning to wonder if the weather causes inflammation in the body generally (not just in joints such as the knee or elbow) and if it is complicating my recovery....

REPLY
1 reply
PCfromFM | @pcfromfm | Dec 29, 2017
In reply to @kimh "Hi everyone, I have been keeping a detailed diary of my activities, pain level, diet and..." + (show)
@kimh

Hi everyone,
I have been keeping a detailed diary of my activities, pain level, diet and weather for the past week and have noticed something that I had been suspecting for some time. When there is a low pressure weather system coming in, my discomfort level from the MP seems to increase. Has anyone else noticed this correlation? My pains from MP are on my lower right abdominal quadrant and since my fall in 2014 (what I believe to be the trigger for everything!), my right knee and my right elbow have become so sore when a low pressure system moves into the area that it feels as though someone has taken a hammer and smashed my elbow and my knee cap. Since the fall, I have had to add a rheumatologist to my team of specialists! I find it odd that all of these maladies seem to be occurring on the right side of my body (though the brunt of my fall occurred on my lower left side of my back!) and all occurring after the trauma of the fall! I am beginning to wonder if the weather causes inflammation in the body generally (not just in joints such as the knee or elbow) and if it is complicating my recovery....

Jump to this post

Wow so interesting ! Happy New Year all! I hope you have enjoyed some time for Christmas and/or Holidays! Welcome Lisa @cconers ! Just catching up. I’m away and internet not always reliable! I too am affected by air pressure changes. I’m unsure at what kind of a change-how extreme-it has to be, but I know migraine sets in and then MP follows suit! Very interesting-everyone in my family laughs at my “weather” knee! But extreme cold is desperate for me. Of course that fits into the “stress” catagory for me! And as I age heat is not good either. Reaction mostly the same-headache starts with ear aches, diahhrea, indigestion, right side lower and/or top left sides pain start. It’s when nausea starts I know I’m really in trouble! Once the switch is on,I have to really pay attention to all stressors or meds become essential.
Thank you all for your support and caring words! I can’t say often enough how it’s great to have others around who really get it!

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