Mesenteric Panniculitis or Sclerosing Mesenteritis

I just want to wish everyone a very Healthy and Happy New Year to come! A little prosperity would be a nice bonus too!!!

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!!!!!!

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!!!!!!

Hi all, since some questions arose on this thread regarding prednisone and prednisolone, we asked a Mayo Clinic pharmacist if she might have anything to add to the discussion. Here what she had to say:

Prednisone and prednisolone are steroids that can reduce inflammation from a large variety of conditions. Both are available in tablet and liquid formulations. The expected side effects would be the same. The liquid formulations are best for children and patients who have difficulty swallowing pills. The liquid formulation gets into our blood a little faster than tablets. Nausea with both formulations can be reduced taking doses with some bland food.

Additional tips for managing steroid-related side effects can be found at https://www.hss.edu/conditions_steroid-side-effects-how-to-reduce-corticosteroid-side-effects.asp.

I came across this posting while doing a search and decided to join because it looks useful to me. I was diagnosed with mesenteric panniculitis on February 20 of this year after going to the emergency room in extreme pain and not being able to keep any food or liquid down. I was brought back to the rapid response room from triage because of a high heart rate which i wasn't having any chest pains at all and the e.r. doc sent me for a CT Scan which showed the mesenteric panniculitis. i was told the pain could last from 12 to 18 months which is not fun. I was put on levaquin and flagyl and told to follow-up with a g.i. doc which i did with an associate of my regular g.i. doc.. She ran some blood work and put on me on another set of meds which worked for a bit then the pain came back again. Got a chance to talk to my regular g.i. doc when accompanyming my husband on his follow-up visit and mentioned that i was diagnosed with this. I was told if i am still having issues to let him know after my husband's endoscopy which i did and was prescribed another med which helped for a bit then stopped worked like the other meds i had been on. While waiting for my husband to come out of surgery for a muscle biopsy i received a call from my g.i. doc after leaving a message to let him know that the pain came back full force a couple of days prior with nothing helping. He had me go under another endoscopy which didn't show anything to the naked eye since he couldn't do a biopsy since I am currently on coumadin and didn't come off since this was somewhat an emergency. I was put on 3 new meds at the time which somewhat helped and like before didn't last very long helping the pain. Saw him for my follow-up last monday and put on another med along sending me for another set of x-rays that showed the area that does not show up with a colonoscopy and endoscopy which those came back normal. My doc is now stumped on what to do to help control the pain so he is at the point he is sending me to either Johns Hopkins or Medstar Georgetown Hospital for further evaluation. I don't mind dealing with pain but if i get a "flare-up" it hurts to the point i can't do anything. Thanks for listening and any suggestions you might be able to provide.

I came across this posting while doing a search and decided to join because it looks useful to me. I was diagnosed with mesenteric panniculitis on February 20 of this year after going to the emergency room in extreme pain and not being able to keep any food or liquid down. I was brought back to the rapid response room from triage because of a high heart rate which i wasn't having any chest pains at all and the e.r. doc sent me for a CT Scan which showed the mesenteric panniculitis. i was told the pain could last from 12 to 18 months which is not fun. I was put on levaquin and flagyl and told to follow-up with a g.i. doc which i did with an associate of my regular g.i. doc.. She ran some blood work and put on me on another set of meds which worked for a bit then the pain came back again. Got a chance to talk to my regular g.i. doc when accompanyming my husband on his follow-up visit and mentioned that i was diagnosed with this. I was told if i am still having issues to let him know after my husband's endoscopy which i did and was prescribed another med which helped for a bit then stopped worked like the other meds i had been on. While waiting for my husband to come out of surgery for a muscle biopsy i received a call from my g.i. doc after leaving a message to let him know that the pain came back full force a couple of days prior with nothing helping. He had me go under another endoscopy which didn't show anything to the naked eye since he couldn't do a biopsy since I am currently on coumadin and didn't come off since this was somewhat an emergency. I was put on 3 new meds at the time which somewhat helped and like before didn't last very long helping the pain. Saw him for my follow-up last monday and put on another med along sending me for another set of x-rays that showed the area that does not show up with a colonoscopy and endoscopy which those came back normal. My doc is now stumped on what to do to help control the pain so he is at the point he is sending me to either Johns Hopkins or Medstar Georgetown Hospital for further evaluation. I don't mind dealing with pain but if i get a "flare-up" it hurts to the point i can't do anything. Thanks for listening and any suggestions you might be able to provide.

I came across this posting while doing a search and decided to join because it looks useful to me. I was diagnosed with mesenteric panniculitis on February 20 of this year after going to the emergency room in extreme pain and not being able to keep any food or liquid down. I was brought back to the rapid response room from triage because of a high heart rate which i wasn't having any chest pains at all and the e.r. doc sent me for a CT Scan which showed the mesenteric panniculitis. i was told the pain could last from 12 to 18 months which is not fun. I was put on levaquin and flagyl and told to follow-up with a g.i. doc which i did with an associate of my regular g.i. doc.. She ran some blood work and put on me on another set of meds which worked for a bit then the pain came back again. Got a chance to talk to my regular g.i. doc when accompanyming my husband on his follow-up visit and mentioned that i was diagnosed with this. I was told if i am still having issues to let him know after my husband's endoscopy which i did and was prescribed another med which helped for a bit then stopped worked like the other meds i had been on. While waiting for my husband to come out of surgery for a muscle biopsy i received a call from my g.i. doc after leaving a message to let him know that the pain came back full force a couple of days prior with nothing helping. He had me go under another endoscopy which didn't show anything to the naked eye since he couldn't do a biopsy since I am currently on coumadin and didn't come off since this was somewhat an emergency. I was put on 3 new meds at the time which somewhat helped and like before didn't last very long helping the pain. Saw him for my follow-up last monday and put on another med along sending me for another set of x-rays that showed the area that does not show up with a colonoscopy and endoscopy which those came back normal. My doc is now stumped on what to do to help control the pain so he is at the point he is sending me to either Johns Hopkins or Medstar Georgetown Hospital for further evaluation. I don't mind dealing with pain but if i get a "flare-up" it hurts to the point i can't do anything. Thanks for listening and any suggestions you might be able to provide.