1. < Digestive Health

Mesenteric Panniculitis and Sclerosing Mesenteritis: Let's connect

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.

bertbiz | @bertbiz | Nov 30, 2016
In reply to @k2aunt "I came across this posting while doing a search and decided to join because it looks..." + (show)
@k2aunt

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.

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H @vdouglas, I had some muscle spasms in my legs and feet while taking the prednisone. I drank Gatorade and used magnesium oil on my legs and both of those things helped. I got off the prednisone and my hair started to come out. The doctors said the hair would grow back in a few months. I'm glad that it didn't some out in areas so I had bald spots. But it is a bit disconcerting to be washing your hair and have bunches wrap around your wrists and hands... But it seems to be subsiding a bit. I've started washing my hair with CliniCure and using the conditioner and treatment.

REPLY
bertbiz | @bertbiz | Nov 30, 2016
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

Jump to this post

@shareie, Have you seen a GI doctor? I was on Prednisone for 2 months and then tapered off. I used the FODMAP diet and the swelling and pain subsided. MP is rare, but manageable. You have to find the right doctor and treatment program. Your primary physician can refer you to a GI doctor. Most everything is covered by insurance.

REPLY
bertbiz | @bertbiz | Nov 30, 2016
In reply to @k2aunt "I came across this posting while doing a search and decided to join because it looks..." + (show)
@k2aunt

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.

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http://www.ibsdiets.org/fodmap-diet/fodmap-food-list/ This was very helpful to me. However, I'm not giving up garlic. When you irritate the intestines by eating foods that are too high in fiber, or various other problems, the intestine is going to get irritated and inflamed. when I was in the worst pain, I had a lot of chicken broth, baked potatoes, white pasta, white bread, white rice. In fact, the GI doctor said those things would help to calm the inflammation and irritation. It did. I lost some weight because I wasn't eating how I used to. But I did try to add herbs so there would be some kind of "green" until I could start adding in vegetables again. I'd say it would be worth a shot. You have to be really careful what you eat and how much. Small meals or snacks are much better than the three big main meals most people are used to eating. I hope this is helpful.

@bertbiz

REPLY
viva | @viva | Nov 30, 2016
In reply to @k2aunt "I came across this posting while doing a search and decided to join because it looks..." + (show)
@k2aunt

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.

Jump to this post

Very helpful indeed, thank you!!

REPLY
amyd | @amyd | Nov 30, 2016
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

Jump to this post

We have a gi doctor. Had scope/colonoscopy to see if they were missing anything. My husband is on bentyl, nortriptoline and something else. Just increased the meds because they aren't working. He was on a strick diet for almost a month and that didnt help either. His stomach swells up alot. Has good days and bad days.

REPLY
bertbiz | @bertbiz | Nov 30, 2016
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

Jump to this post

I wish I could be of more help.

REPLY
Von, Alumni Mentor | @vdouglas | Nov 30, 2016
In reply to @k2aunt "I came across this posting while doing a search and decided to join because it looks..." + (show)
@k2aunt

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.

Jump to this post

I suppose losing one's hair is not such a terrible sacrifice if the pain and inflammation goes away. I have heard that if you are diabetic it can really upset your blood sugar levels. Even if you aren't diabetic, I have heard that it can. I have not heard about the hair loss. I hope everything works out well for you.Best  wishes and good health to you.@vdouglas

REPLY
Von, Alumni Mentor | @vdouglas | Nov 30, 2016
In reply to @k2aunt "I came across this posting while doing a search and decided to join because it looks..." + (show)
@k2aunt

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.

Jump to this post

@amyd,That is very frustrating. I really hope he can improve without the surgery. I'm sure everything seems kind of hopeless but there is always a chance things can turn around. I have read where that happens. Have hope and my best wishes are for your husbands recovery.@vdouglas

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shirleyfoggepiazza | @shirleyfoggepiazza | Dec 6, 2016

I am sorry. I am so tired that so many of us live in the Shadows and don't have fulfilling active lives. I thought Toxic Mega colon, recurrent CDIFF and Neuropathy are bad. I now have Pancytopenia. Is it caused by meds....or auto-immune problems.

How do we bring our plights to national attention. I am tired of psotiasis ads and no new treatments that would get us back to leading normal lives.

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obert22 | @obert22 | Dec 9, 2016

Hello all!

Just diagnosed with this condition today as a matter of fact. Didn't get a lot of info from the doctor. Going on a prednisone regiment. I've read through some of the comments here and will continue. Which leads me to my questions...

It seems the prednisone works well for most. Does anyone have experience with it NOT working and what steps occurred next for you?

Did anyone notice certain foods that made it worse than others?

Anything you feel is really important you would share to someone that just discovered they have this condition?

Thank you all in advance. 🙂

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