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

I have been recently diagnosed with SM. Are there any foods one should avoid because the small bowel being involved? lectins? fiber? fats?

REPLY
@connie1966

I have been recently diagnosed with SM. Are there any foods one should avoid because the small bowel being involved? lectins? fiber? fats?

Jump to this post

I just try and eat healthy with the occasional sweet….dark almond chocolate. I Try and keep away from any greasies, but generally everything in moderation. It’s Trial and error. For me, over doing it in the garden, or things like the cleaning windows motion affects me more.

REPLY
@kimh

Hi @jessienalu
I want to say "welcome", but….instead I will give you a quick recap on my experience and hopefully it will help you when you get to your gastro appointment.
Two weeks after suffering a severe back trauma (bad fall on black ice), I came down with pain in my right kidney area that radiated to my right abdominal area. After 3 CTs, a week long hospital stay (trying to get the pain under control) and a surgical biopsy (to rule out lymphoma), I was formally diagnosed with MP. I was put on steroid therapy (Prednisone) for about 6 months. I was on 40 mg. daily for three months and began weaning down 5 mg. weekly until I started suffering from esophageal spasms (side effect of Prednisone) when I was hospitalised for another 10 days and eventually taken off the Prednisone. While Prednisone brings it's gifts (weight gain, sleeplessness, facial hair, moods), it also put me in remission for about 2 and a half years. And I mean complete remission where I was beginning to forget that I even had MP. Unfortunately, after a stressful situation (my father was diagnosed and ended up dying of cancer all within a short 3 month period), I fell out of remission. That was August 2017. I am still off work trying to get this thing under control. At the moment I am on (still!) Prednisone 5 mg. daily, Tamoxifen 20 mg. daily and Azathioprine 150 mg. daily. This 'cocktail' has given me some improvement pain wise however, every medication brings side effects which I am willing to deal with as long as the pain begins to go away. I hope that this helps you. Someone on this site also recommended a book called, "How to be Sick" by Toni Bernhard which comes from a Buddhist point of view. I am not a Buddhist, but found this book extremely helpful while trying to deal with a mind that wants to do so much combined with a body which restricts me from doing those things. I hope my experience can help you.

Jump to this post

From the bottom of my heart, thank you for taking the time to reply to me.
I am so sorry to hear about your pain.
My gastro appointment got declined because «my symptoms are not newly accured». So now my doctor that has no experience or education about this is going to follow me up. I have not been to work for 5 weeks. In 4 days I’m going back to the doctor and honestly feel like there is no point. How is the doctor going to help me when she knows nothing about this. I just have to push her to force my gastro appointment forward. I have a right to be treated by a specialist when the doctors don’t know what to do!
Thank you so much for writing your experience to me. I will read it and show it to my doctor. It will be so helpfull for me to have it with me, so thank you again. I will also try to get a hold of that book.
I wish you the best and pray for your recovery.

REPLY
@connie1966

I have been recently diagnosed with SM. Are there any foods one should avoid because the small bowel being involved? lectins? fiber? fats?

Jump to this post

Welcome Connie! Over much time and many elimination
diets I feel best /have the smallest amount of pain and “special” effects with no alcohol, no onions or corn in any form, no seafood of any kind, few spices, bland foods, small amounts of beef, pork, poultry, and cheese/yogurt no problem with wheat can’t do any chemicals so no additives etc. Generally I can stay out of hospital with gravol and diet management, tons of rest and a positive attitude! Be well friend!

REPLY
@jessienalu

From the bottom of my heart, thank you for taking the time to reply to me.
I am so sorry to hear about your pain.
My gastro appointment got declined because «my symptoms are not newly accured». So now my doctor that has no experience or education about this is going to follow me up. I have not been to work for 5 weeks. In 4 days I’m going back to the doctor and honestly feel like there is no point. How is the doctor going to help me when she knows nothing about this. I just have to push her to force my gastro appointment forward. I have a right to be treated by a specialist when the doctors don’t know what to do!
Thank you so much for writing your experience to me. I will read it and show it to my doctor. It will be so helpfull for me to have it with me, so thank you again. I will also try to get a hold of that book.
I wish you the best and pray for your recovery.

Jump to this post

Hi @jessienalu, I agree that you absolutely need real help. Having said that, I am my GP's and GI's only patient with this disease and they are coordinating my health care. As long as your doctor is comfortable reaching out to colleagues for advice, you should be okay. There is no cure unfortunately and not much reading out there, but we can all share our experiences with one another to help. The one thing that I have noticed is that this relapse is quite different than when I was previously diagnosed almost 5 years ago. There is a lot of trial and error involved as well as keeping stress to a minimum and certain physical activities as well (sweeping, cleaning windows and….sad to say….yoga!)

REPLY

Im 24 years old and been suffering with MP for about 5 years now, Getting diagnosed was such a relief because finally I had an answer. I went from hospital to hospital till I found a Dr that took my pain serious enough and was able to see from the CT scan what others had missed. I had a biopsy done and thats how I was diagnosed as A typical. I was treated w all kinds of different meds because they had never had an A typical patient before. I was put on Prednisone finally after 2 years on steroids, it worked I was able to eat and the constant nausea lessened. My family is always worried which makes it difficult because since stress is such a trigger worrying about them being worried causes episodes all the time. My pain comes about very often after I eat or waking up. Cannabis has helped a little but not as much as I wish. In NYC there arent any Drs I have found who have been of help and my old G.I has left and due to state of health insurance the hospital that was treating me is no longer able to treat me. If any one knows of any good G.I Drs in NY do let me know?.

REPLY
@cartagena13

Im 24 years old and been suffering with MP for about 5 years now, Getting diagnosed was such a relief because finally I had an answer. I went from hospital to hospital till I found a Dr that took my pain serious enough and was able to see from the CT scan what others had missed. I had a biopsy done and thats how I was diagnosed as A typical. I was treated w all kinds of different meds because they had never had an A typical patient before. I was put on Prednisone finally after 2 years on steroids, it worked I was able to eat and the constant nausea lessened. My family is always worried which makes it difficult because since stress is such a trigger worrying about them being worried causes episodes all the time. My pain comes about very often after I eat or waking up. Cannabis has helped a little but not as much as I wish. In NYC there arent any Drs I have found who have been of help and my old G.I has left and due to state of health insurance the hospital that was treating me is no longer able to treat me. If any one knows of any good G.I Drs in NY do let me know?.

Jump to this post

@cartagena13 I know that the Mayo clinic is far and Im not sure if anyone is from NY but this is the only place Ive found w ppl who have MP and also whos stories I can relate to and can understand what its like having something rare and trying to figure out what works and since its something that people do not have knowledge of they just dont think much of the struggle. Drs and family thought I was making it up people thought I was starving my self for attention, and due to the drug epidemic some hospitals didnt even give me a second look they would give me zantac an IV and ignore me since nothing was visibly wrong. I was starving for months in pain unable to sleep , hiding from my family at 20 bc I didnt want people to see me struggling so much and it messed w so many aspects of my life just bc the Drs were unable to diagnose me. They even once tried to lock me up and convince my parents I was a danger to myself .Ridiculous right?
I still struggle w pain every now and then and for any women is it just me or does that time of the month get more painful since dealing with MP? well idk why Im really writing all this but its just nice to get it out there to people who may read it and if they do just knowing someone will understand. and if anyone has any answers to the 2 questions I asked in this essay I would greatly appreciate it. Hope everyone is feeling good.

REPLY
@cartagena13

Im 24 years old and been suffering with MP for about 5 years now, Getting diagnosed was such a relief because finally I had an answer. I went from hospital to hospital till I found a Dr that took my pain serious enough and was able to see from the CT scan what others had missed. I had a biopsy done and thats how I was diagnosed as A typical. I was treated w all kinds of different meds because they had never had an A typical patient before. I was put on Prednisone finally after 2 years on steroids, it worked I was able to eat and the constant nausea lessened. My family is always worried which makes it difficult because since stress is such a trigger worrying about them being worried causes episodes all the time. My pain comes about very often after I eat or waking up. Cannabis has helped a little but not as much as I wish. In NYC there arent any Drs I have found who have been of help and my old G.I has left and due to state of health insurance the hospital that was treating me is no longer able to treat me. If any one knows of any good G.I Drs in NY do let me know?.

Jump to this post

Hello @cartagena13 ,
I'm sorry and relieved (is that possible?) regarding your diagnosis. I'm not sure if you can travel to Canada for health care. From what has been shared on this site, it would seem that I am receiving similar treatment to my American friends. For this recent bout, I am currently on CBD oil, prednisone, tamoxifen and azathioprine. I hope this helps you.

REPLY

I was diagnosed by a radiologist recently and my gi doc says it is rare and little is known about it. He said we leave it alone since there is no real way to treat it. I experience pain and nausea from it which is why the ct was done in the first place by my urologist to check for kidney stones. While i was relieved to hear from my gi that is benign, i feel like im being blown off about my pain. I dont know where to go from here.

REPLY

Hi @stacy72 This symptoms of this disease can be treated to help alleviate your symptoms. There are studies (and colleagues!) that your GI could reach out to for direction. I am taking Prednisone, Tamoxifen, Azathioprine and CBD oil to help shrink the inflammations and encourage remission. For pain, I am taking something called Targin (a very low dose of oxy that is a slow release medication that does not cause constipation) and for breakthrough pain, I am taking oxycodone, but sparingly. I hope this helps you.

Liked by stacy72

REPLY
@stacy72

I was diagnosed by a radiologist recently and my gi doc says it is rare and little is known about it. He said we leave it alone since there is no real way to treat it. I experience pain and nausea from it which is why the ct was done in the first place by my urologist to check for kidney stones. While i was relieved to hear from my gi that is benign, i feel like im being blown off about my pain. I dont know where to go from here.

Jump to this post

Welcome stacy72. I have found over time that eliminating as much stress as possible, getting more rest then most and watching my diet -that I am able to have mostly good days. Keeping positive and feeling as much in control as I can be -makes a huge difference to my feeling good. Research and listen to this group and the one on Facebook, we are all in this together! Welcome!

Liked by stacy72

REPLY
@pcfromfm

Welcome stacy72. I have found over time that eliminating as much stress as possible, getting more rest then most and watching my diet -that I am able to have mostly good days. Keeping positive and feeling as much in control as I can be -makes a huge difference to my feeling good. Research and listen to this group and the one on Facebook, we are all in this together! Welcome!

Jump to this post

Are there certain foods i should be avoiding also?

REPLY
@stacy72

Are there certain foods i should be avoiding also?

Jump to this post

Many others can recommend to you what works best for them. Many have specific diets they follow, most have specific foods they avoid. Over much time and many elimination
diets I feel best /have the smallest amount of pain and “special” effects with no alcohol, no onions or corn in any form, no seafood of any kind, few spices, bland foods, small amounts of beef, pork, poultry, and cheese/yogurt no problem with wheat can’t do any chemicals so no additives etc. Generally I can stay out of hospital with gravol and diet management, tons of rest and a positive attitude!

REPLY
@connie1966

I have been recently diagnosed with SM. Are there any foods one should avoid because the small bowel being involved? lectins? fiber? fats?

Jump to this post

I have been very lucky in that I am able to control the disease and symptoms with supplements recommended by Dr. Kresser and the Paleo auto immune protocol diet. I cheat but get more strict when symptoms reappear

Liked by lioness

REPLY

Has anyone been put on Nortriptyline for pain? My GI put me on it and it was not worth the side effects for me. I'm really feeling like he thinks I have IBS. I have had I s for years and that's not what I am feeling. The pain Is almost constant but tolerable to a point. I have. A follow up appointment this week. I'm just not feeling g like he is listening to me and that he already had his mind made up about my diagnosis when he walked in the door. He said I didnt have MP because I dont have the typical body habits of those who do have MP. Meaning I'm too thin to have it. We will see what happens but I'm not very optimistic about my treatment or lack thereof.

REPLY
Please login or register to post a reply.