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

@peterhamilton

Hi all 44 old male living in Weymouth Dorset united kindgom was fairly fit last year running upto 25 miles a week in the gym and all was going fairly well, feb/march this year had debilitating abdominal pains lack of energy and not wantig food feeling sick was admited to hospital for a week got out had loads of blood tests scans follow ups nothing found local gp’s basically didn’t know what to do and dismissed me which made me feel awful, the pain lasted for 6 weeks or so and then came back abbout 17 weeks ago, worse this time though to the point i was hospitalised for 13 days pcb pain fentinol relief, oramorph, tramadol, oycodone loads of pain killers and laxatives laparoscopy perfomed xrays bloods and then a CT which showed wait for it Mesenteric Panniculitis with a secondary diagnosis of diverticulitis left hospital after 13 days on steriods for 8 weeks reducing 5mg per week 8 tramadol a day 8 paracetamol oxycodone 20g twice a day and liquid to top up every 4 hours as well as laxatives, I havent eaten a proper meal in almost 5 months the smell of food makes me want to vomit and am sick if i do eat also get severe pain in the stomach and bowels have been on fortijuice and fortisip liquid drinks for calories and intake as well as yoghurts and energy drinks, have been off of work for 8 weeks and not getting paid, not sure how long the pain is gonna last for, my gastro specialist didnt see me once when i was in hospital.
not sure where to go from here really have been told it’s not cureable and could come and go as it likes,as well as IBS and reflux which i have had for about 12 years i have had testicular cancer 7 years ago and a bladder and prostrate op which has left me partially incontinent and now more so as i have a catheter in as i couldn’t pee when i was in so much pain, not sure when the catheter is due to come out. bowels not good because of the liquid diet and have frequent accidents and this week cotracted a urine infection on top of everything else.

just wanted to say hi to everyone and if anyone has any ideas or comments or questions please feel free to contact me

follow up apointment booked for the 22nd december gastro doctor but any help in the meantime would be very much appreciated as i could do with some answers so i can try and get this under control

kind regards

peter

Jump to this post

How are you doing @peterhamilton

REPLY
@lisas444

Hi Gehres – and welcome that you found this page. We have 196 people in a private group and I just sent you an email to your email box on this page re: the info to find me and have me add you over. We have ages from 2 years of age through 80 in there from all over the US and several other countries represented as well. Hope to hear from you soon! Sorry you’ve been diagnosed with this crappy disease and hoping that you can get in under control soon! 🙂 My kiddo was 14 when she was diagnosed and has, unfortunately, many bowel obstructions from this SM disease and multiple abdominal surgeries as a result of this disease, etc. We’ve now been recently to Cleveland Clinic for evaluation for a bowel transplant and returning back up there in a few weeks for another surgery. We live in Tulsa, Oklahoma. Hers does NOT have an auto immune component to it and hoping that transplanting the bowel and mesentery that this will be the end to it for her (she’s had multiple resections done). Her’s is the extreme though – we have that group with ranging from mild to severe symptoms of people and have lost 3 in our group with it in the past year with SM that were severe as well. Most are not thankfully! 🙂 Hope to hear from you soon!

Lisa

Jump to this post

How is your daughter doing Lisa? Were you able to be home over the holidays? Will the next surgery be for the bowel transplant?

REPLY
@Weedy

HI All,
My name is Gehres. And I am a newbie. I was diagnosed with Mesenteric panniculitis this past Friday from a CT SCAN. I have been suffering from this since 2000. Urologist diagnosed enlarged prostate then Oh no Over active bladder, Opps no its Interstitial cystitis etc. My GP prescribed to me what is a questionable drug, as from what I can find on the net no other patients are being prescribed Hydroxychloroquine Sulfate a drug to treat malaria? Is this a common treatment? I tend to really question this treatment since the Steroid he put me on before the CT SCAN basically turned me in to a mess that could not get out of bed for 4 days. Severe depression aggression etc from the drug Dexamethasone. I am also on Oxycondone for the pain. I thank you all in advance for any advice or help.

Jump to this post

Great to learn a little bit more about you @Weedy. You may be able to provide support to other members in the Heart Health group, in particular @twptrustrek, who lives with a-fib too. https://connect.mayoclinic.org/discussion/i-have-had-5-cardioversions-one-stent-one-balioon-angioplasty-and-an-cath/
It’s one big community!

Glad you’ve paired up with @vdouglas here too.

REPLY

Hi Gehres

You're dealing with a lot of tough issues. It's hard but you have to be optimistic about the follow up Ablation. Get that A-fib taken care of you are going to feel much better. I have pvc's as a result of Mitral Valve Prolapse so I can, to some degree, understand. It's very difficult dealing with two or more major issues and just as difficult to remain optimistic.

I have only been diagnosed with Mesenteric Panniculitis for a year so I am really new at understanding this disease. I have probably had it for about 4years prior to diagnosis. I am also diabetic which complicates things.

I do not know about the MRI. The hospital wanted me to have one done but my Doctor said it wasn't necessary because the CT would best show what is needed. Have you talked to your doctor about it? That brings up another issue, sometimes Doctors can get a little overwhelmed with multiple issues, makes it hard to cover everything in a 30 min. appointment.

There are some good dietary recommendations on this site as well as common treatments. I have learned much from reading the older posts.

Wish you well. Sorry this is so long. Keep us informed how you are doing ok.

Von

REPLY
@Weedy

HI All,
My name is Gehres. And I am a newbie. I was diagnosed with Mesenteric panniculitis this past Friday from a CT SCAN. I have been suffering from this since 2000. Urologist diagnosed enlarged prostate then Oh no Over active bladder, Opps no its Interstitial cystitis etc. My GP prescribed to me what is a questionable drug, as from what I can find on the net no other patients are being prescribed Hydroxychloroquine Sulfate a drug to treat malaria? Is this a common treatment? I tend to really question this treatment since the Steroid he put me on before the CT SCAN basically turned me in to a mess that could not get out of bed for 4 days. Severe depression aggression etc from the drug Dexamethasone. I am also on Oxycondone for the pain. I thank you all in advance for any advice or help.

Jump to this post

I went through the usual gamit of emotions (shock,remorse and anger )
I went to a few pshyc sessions and some xanax.
I finally figured out that it was my own self that would control my condition influence and not my condition controlling me!!
After 2-1/2 years of a “normal” life BOOM the a-fib reared it’s ugly head again and lasted for three days before returning to normal rythm.
I,m not a whiner nor a pill popper and try to overcome emotional anxieties with a busy mode of activities both physical and mental.
It’s good to know that I’m not the ONLY a-fib person on the planet and how others handle it.
REK

REPLY

Hi. My name is Angela and I live in Australia. It has been 2-3 yrs since I last posted. I was diagnosed with M.P nearly 7 yrs ago and have had flare ups every 6 months. Some have been severe and I have had to be hospitalised for pain management but usually if I get on to Prednisolone early enough and take Oxycodone and Tramadol, I can manage it. I have a good doctor who has read up as much as possible on the illness but trusts me to know when I am having an attack which is usually confirmed by CT. It has now been 12 months since my last bout which was very severe and lasted longer than usual. In the early years I noticed that during an attack, eating meat brought about more pain so over the years I have developed an aversion to most meats and usually live on chicken and fish. I am beginning to think that this change in my diet is the result for me not getting an attack in line with the usual six monthly cycle that I have experienced in the past. Have any other sufferers changed their diet in this way and noticed any benefits.

REPLY
@tardis6167

Hi. My name is Angela and I live in Australia. It has been 2-3 yrs since I last posted. I was diagnosed with M.P nearly 7 yrs ago and have had flare ups every 6 months. Some have been severe and I have had to be hospitalised for pain management but usually if I get on to Prednisolone early enough and take Oxycodone and Tramadol, I can manage it. I have a good doctor who has read up as much as possible on the illness but trusts me to know when I am having an attack which is usually confirmed by CT. It has now been 12 months since my last bout which was very severe and lasted longer than usual. In the early years I noticed that during an attack, eating meat brought about more pain so over the years I have developed an aversion to most meats and usually live on chicken and fish. I am beginning to think that this change in my diet is the result for me not getting an attack in line with the usual six monthly cycle that I have experienced in the past. Have any other sufferers changed their diet in this way and noticed any benefits.

Jump to this post

Hi Angela,

Welcome back if I can say so. Good to hear you are coping and experiencing some encouraging improvement. Here in the U.S. we have a Steak House called "Outback" they wouldn't like your theory.

I just started having a flare with abdominal distress, cramping and pain mostly on the left side going down to lower abdomen. I am going right into a soft mostly liquid diet trying to stay out of ER. It's been over a year for me.

Anyway, just wanted to mention that I had just started adding more protein into my diet before this flare. I am diabetic so I was hoping to replace carbs with meat. I don't know if it is coincidental but I am certainly going to take note after your considering your remarks. My Doctor thinks I pulled something, imagine that. I will say he is a good Doctor.

Hope it keeps working for you, maybe something for all of us. Keep us posted please.

Von

REPLY

Von:

Sorry to hear you are going through another bout. I seem to be the extremely fortunate as I have not had a recurrence in over four years now.

I know this is completely off beat, but along the lines of diet, I have be trying to juice as much as I can. It is a pain to keep the juicer clean and to make the juices, but I have to admit that I feel better when I do. I know it is likely only a placebo affect that I am feeling, but I will take it!!

When I was first sick, a friend referred me to the movie and web site http://www.fatsickandnearlydead.com. It is about an Australian with an auto-immune who juices and travels his way across America. Not sure the science is sound, but again, when you are feeling that crappy, you will try just about anything, and so I did.

My favorite juice is as follows: Kale, spinach, and Swiss chard with an apple, half a lemon, and some strawberries all over ice. It is green and gross looking, but tastes not half bad. I just visualize all those good ingredients running like an army to help my immune system!!

Lastly, I took the 23andMe.com test. It is very cool. They now have over a million people in their data base and are trying to help pharma companies find enough people with wierd stuff like we do to sift through our DNA to find cures. I think all of us with this auto-immune should take the test, then tell them we have, who we are, and try to get a scientist to start looking at our DNA for a genetic marker. Just a thought.

Bill

REPLY
@billymac65

Von:

Sorry to hear you are going through another bout. I seem to be the extremely fortunate as I have not had a recurrence in over four years now.

I know this is completely off beat, but along the lines of diet, I have be trying to juice as much as I can. It is a pain to keep the juicer clean and to make the juices, but I have to admit that I feel better when I do. I know it is likely only a placebo affect that I am feeling, but I will take it!!

When I was first sick, a friend referred me to the movie and web site http://www.fatsickandnearlydead.com. It is about an Australian with an auto-immune who juices and travels his way across America. Not sure the science is sound, but again, when you are feeling that crappy, you will try just about anything, and so I did.

My favorite juice is as follows: Kale, spinach, and Swiss chard with an apple, half a lemon, and some strawberries all over ice. It is green and gross looking, but tastes not half bad. I just visualize all those good ingredients running like an army to help my immune system!!

Lastly, I took the 23andMe.com test. It is very cool. They now have over a million people in their data base and are trying to help pharma companies find enough people with wierd stuff like we do to sift through our DNA to find cures. I think all of us with this auto-immune should take the test, then tell them we have, who we are, and try to get a scientist to start looking at our DNA for a genetic marker. Just a thought.

Bill

Jump to this post

Hi Bill,

I’ve also been green juicing and it makes a big difference. I prefer a mix
of celery, spinach, cucumber, kale and carrot.

Drew

REPLY
@tardis6167

Hi. My name is Angela and I live in Australia. It has been 2-3 yrs since I last posted. I was diagnosed with M.P nearly 7 yrs ago and have had flare ups every 6 months. Some have been severe and I have had to be hospitalised for pain management but usually if I get on to Prednisolone early enough and take Oxycodone and Tramadol, I can manage it. I have a good doctor who has read up as much as possible on the illness but trusts me to know when I am having an attack which is usually confirmed by CT. It has now been 12 months since my last bout which was very severe and lasted longer than usual. In the early years I noticed that during an attack, eating meat brought about more pain so over the years I have developed an aversion to most meats and usually live on chicken and fish. I am beginning to think that this change in my diet is the result for me not getting an attack in line with the usual six monthly cycle that I have experienced in the past. Have any other sufferers changed their diet in this way and noticed any benefits.

Jump to this post

Hi there,

I was diagnosed and became symptomatic 3.5 years ago, and I could barely
walk, had no appetite, couldn’t sleep, but refused to take any drugs. I am
aware that this disease is caused by various factors, but I had a suspicion
that my outbreak was autoimmune related. I researched various diets, and
did the Paleo autoimmune protocol. Initially for 6 weeks I was very
strict, and then I added different foods into my diet. I lost about 20
pounds in 6 weeks, and I wasn’t too heavy to begin with. Now I go on the
diet, but cheat regularly. When I cheat too much or too long my body let’s
me know as I start to feel cramps in my messentary. The diet has worked
amazing well for me. I had high triglycerites, slightly high glucose,
elevated liver enzymes, and low good cholesterol. Now all my blood work is
perfect with no meds.

My wife did the diet as well, because she had arthritis in her finger and
couldn’t even hold a pen. Now her finger is fine. I wish you all the best.

take care,


Doron

REPLY
@billymac65

Von:

Sorry to hear you are going through another bout. I seem to be the extremely fortunate as I have not had a recurrence in over four years now.

I know this is completely off beat, but along the lines of diet, I have be trying to juice as much as I can. It is a pain to keep the juicer clean and to make the juices, but I have to admit that I feel better when I do. I know it is likely only a placebo affect that I am feeling, but I will take it!!

When I was first sick, a friend referred me to the movie and web site http://www.fatsickandnearlydead.com. It is about an Australian with an auto-immune who juices and travels his way across America. Not sure the science is sound, but again, when you are feeling that crappy, you will try just about anything, and so I did.

My favorite juice is as follows: Kale, spinach, and Swiss chard with an apple, half a lemon, and some strawberries all over ice. It is green and gross looking, but tastes not half bad. I just visualize all those good ingredients running like an army to help my immune system!!

Lastly, I took the 23andMe.com test. It is very cool. They now have over a million people in their data base and are trying to help pharma companies find enough people with wierd stuff like we do to sift through our DNA to find cures. I think all of us with this auto-immune should take the test, then tell them we have, who we are, and try to get a scientist to start looking at our DNA for a genetic marker. Just a thought.

Bill

Jump to this post

Bill

Appreciate the support. I will keep the juicer in mind. Right now not eating much, just water and cottage cheese, soft breakfast bar. Not much appetite or energy but the pain does seem to be better. Trying to tough it out and not increase from the one 50mg Tramadol in the evening. No fever a big plus. Had blood test today for "everything" to see ?

I will check out that site you mentioned. Glad to hear you are doing so well. We have to be thankful for all the good days and just get past the bad.

Von

REPLY

Hi everyone, I’m Nancy from ID. I was diagnosed with MP in April 2015. Went thru 4 months of Prednisone and have been asymptomatic since. Followup CT 2 weeks ago still shows MP. They are recommending that I go to the Mayo for second opinion and followup. Any suggestions or recommendations since I’m currently not having any symptoms??

REPLY

If they are recommending Mayo, I don’t see why you wouldn’t go. They were fantastic when I went. They made no promises on the future course of this for me, but so far so good. Only other advise I have is to try to avoid CT scans and opt for MRI’s when you have the choice.

REPLY

My dad has had two surgeries since November 2015 for a small bowel obstruction that is still unresolved. He is currently on TPN for nutrition. He is likely headed for a third surgery later this year. Based on the pathology reports of biopsies taken at second surgery and the discovery of a large inflammatory mass attached to the small bowel, we believe this may be a severe case of mesenteric panniculitis. We have been unsuccessful in trying to get his current doctors to obtain definitive diagnosis so that a course of steroids may be attempted. Does anyone have any references for GI doctors with expertise in mesenteric panniculitis especially in the Fort Lauderdale or West Palm Beach area of Florida? Thanks.

REPLY
@billymac65

If they are recommending Mayo, I don’t see why you wouldn’t go. They were fantastic when I went. They made no promises on the future course of this for me, but so far so good. Only other advise I have is to try to avoid CT scans and opt for MRI’s when you have the choice.

Jump to this post

Thank you for the response and the info on the MRI vs CT scan, definitely will keep that in mind. My doctors here are very honest that they really don’t know anything about MP. I’ve read that Dr. Darrell Pardi at the Minnesota clinic has done research in this, although the Phoenix clinic is closer for me. If anyone has any recommendation of a specific Mayo doctor they’ve seen, I would be interested. I was so thankful when I found this site and for all of the information that has been shared.

REPLY
Please login or register to post a reply.