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 21, 2017
In reply to @fernandoparce "Hello, I have a couple of questions about Mesenteric Panniculitis. I was recently diagnosed with this..." + (show)
@fernandoparce

Hello, I have a couple of questions about Mesenteric Panniculitis. I was recently diagnosed with this disease after I was injured in my stomach at work. After about 2 weeks of pain I went in to get a ct scan and this showed up. They have done blood work, exrays and a catscan and it showed no tumors, cyst's or cancer. I just want to get a better understanding of this disease. I read that it is very rare and there aren't to many studies on it. So for the people who do have it, it would be very helpful to hear from you all.
1. Can I die from this disease?
2. Is there a special diet I have to follow?
3. Can I have this disease without having cancer?
4. When will the weight loss stop? Will I continue to loose weight until I'm all bones? (I've already lost 15 pounds, My brother just passed away from Pancreatic Cancer 3 weeks ago and seeing him suffer like that I'm sure affected my health and weight as well but I just don't want to end looking frail)
5. Besides Prendisone does anyone know of anything else I can take that would help?
6. Has anyone tried an all natural way of treating it (chemical free) if so what did they use and how effective was it?
Thank You,
Fernando Arce
I look forward to hearing from you.

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Thank you very very much I've been waiting for somebody to answer me my questions and you just did I feel a lot better now thank you I've been losing like 20 lb but my appetite goes and comes back but the pain is the same it goes and it comes kind of weird.

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Dec 22, 2017
In reply to @viva "Hello fernandoparce, I have been following your post for the past two weeks or so and..." + (show)
@viva

Hello fernandoparce, I have been following your post for the past two weeks or so and I am so sorry to hear that you are having such a hard time with this disease. I was diagnosed with MP in April 2016. It's definitely no picnic to deal with. I tried Prednisone 20mg it made me so sick that I just couldn't take it anymore. Things have gotten better because of a serious change in my diet. If I eat right I feel better. I too have loss quite a bit of weight so I understand your concern. Just wanted to let you know that you are not alone! Hopefully you feel better soon!

Jump to this post

Hello @viva

I see in your post that you mentioned, "Things have gotten better because of a serious change in my diet. If I eat right I feel better."

Will you share with us some of your dietary changes that have helped you?

Teresa

REPLY
fernandoparce | @fernandoparce | Dec 22, 2017
In reply to @viva "Hello fernandoparce, I have been following your post for the past two weeks or so and..." + (show)
@viva

Hello fernandoparce, I have been following your post for the past two weeks or so and I am so sorry to hear that you are having such a hard time with this disease. I was diagnosed with MP in April 2016. It's definitely no picnic to deal with. I tried Prednisone 20mg it made me so sick that I just couldn't take it anymore. Things have gotten better because of a serious change in my diet. If I eat right I feel better. I too have loss quite a bit of weight so I understand your concern. Just wanted to let you know that you are not alone! Hopefully you feel better soon!

Jump to this post

Last night I had a drink another prednisone and a painkiller my lower stomach was just hurting real real bad is that normal where the pain always hits I just been eating salt crackers since last night

REPLY
fernandoparce | @fernandoparce | Dec 22, 2017
In reply to @viva "Hello fernandoparce, I have been following your post for the past two weeks or so and..." + (show)
@viva

Hello fernandoparce, I have been following your post for the past two weeks or so and I am so sorry to hear that you are having such a hard time with this disease. I was diagnosed with MP in April 2016. It's definitely no picnic to deal with. I tried Prednisone 20mg it made me so sick that I just couldn't take it anymore. Things have gotten better because of a serious change in my diet. If I eat right I feel better. I too have loss quite a bit of weight so I understand your concern. Just wanted to let you know that you are not alone! Hopefully you feel better soon!

Jump to this post

Sometimes I feel I feel like it's cancer and my anxiety goes up more but they tested me for cancer and I don't have no cancer does it just hurt that bad

REPLY
fernandoparce | @fernandoparce | Dec 22, 2017
In reply to @fernandoparce "Hello, I have a couple of questions about Mesenteric Panniculitis. I was recently diagnosed with this..." + (show)
@fernandoparce

Hello, I have a couple of questions about Mesenteric Panniculitis. I was recently diagnosed with this disease after I was injured in my stomach at work. After about 2 weeks of pain I went in to get a ct scan and this showed up. They have done blood work, exrays and a catscan and it showed no tumors, cyst's or cancer. I just want to get a better understanding of this disease. I read that it is very rare and there aren't to many studies on it. So for the people who do have it, it would be very helpful to hear from you all.
1. Can I die from this disease?
2. Is there a special diet I have to follow?
3. Can I have this disease without having cancer?
4. When will the weight loss stop? Will I continue to loose weight until I'm all bones? (I've already lost 15 pounds, My brother just passed away from Pancreatic Cancer 3 weeks ago and seeing him suffer like that I'm sure affected my health and weight as well but I just don't want to end looking frail)
5. Besides Prendisone does anyone know of anything else I can take that would help?
6. Has anyone tried an all natural way of treating it (chemical free) if so what did they use and how effective was it?
Thank You,
Fernando Arce
I look forward to hearing from you.

Jump to this post

Yesterday my stomach was blown and it heard it really bad is that normal

REPLY
PCfromFM | @pcfromfm | Dec 22, 2017
In reply to @fernandoparce "Hello, I have a couple of questions about Mesenteric Panniculitis. I was recently diagnosed with this..." + (show)
@fernandoparce

Hello, I have a couple of questions about Mesenteric Panniculitis. I was recently diagnosed with this disease after I was injured in my stomach at work. After about 2 weeks of pain I went in to get a ct scan and this showed up. They have done blood work, exrays and a catscan and it showed no tumors, cyst's or cancer. I just want to get a better understanding of this disease. I read that it is very rare and there aren't to many studies on it. So for the people who do have it, it would be very helpful to hear from you all.
1. Can I die from this disease?
2. Is there a special diet I have to follow?
3. Can I have this disease without having cancer?
4. When will the weight loss stop? Will I continue to loose weight until I'm all bones? (I've already lost 15 pounds, My brother just passed away from Pancreatic Cancer 3 weeks ago and seeing him suffer like that I'm sure affected my health and weight as well but I just don't want to end looking frail)
5. Besides Prendisone does anyone know of anything else I can take that would help?
6. Has anyone tried an all natural way of treating it (chemical free) if so what did they use and how effective was it?
Thank You,
Fernando Arce
I look forward to hearing from you.

Jump to this post

Morning @fernandoparce , I’m not sure there is much of a “normal”. It’s always best to go back to your Doctor with questions and concerns. Pain can be a daily state for me when I’m in an “episode” of irritation or inflammation. The biggest thing that starts a downside for me is stress. Any kind of stress. I am an old retired Teacher who spent many years working in very difficult situations and thus-although I loved it- had many years of pain and struggle with my body. Learning to life with how my body works did not come easy. (And still doesn’t) But taking a deep breathe and trying to find some inner peace, doing whatever is necessary to try to get closer to that -really essential for me. The “right” food, no alcohol, no chemicals, tons of rest and a life mid road is how I manage the amount of pain I have daily. I had to realize my “normal” is very much just mine. I talk to myself too! Lol Before I found this site I seemed to be the only one who “got it!”. Be kind to yourself!

REPLY
fernandoparce | @fernandoparce | Dec 22, 2017
In reply to @fernandoparce "Hello, I have a couple of questions about Mesenteric Panniculitis. I was recently diagnosed with this..." + (show)
@fernandoparce

Hello, I have a couple of questions about Mesenteric Panniculitis. I was recently diagnosed with this disease after I was injured in my stomach at work. After about 2 weeks of pain I went in to get a ct scan and this showed up. They have done blood work, exrays and a catscan and it showed no tumors, cyst's or cancer. I just want to get a better understanding of this disease. I read that it is very rare and there aren't to many studies on it. So for the people who do have it, it would be very helpful to hear from you all.
1. Can I die from this disease?
2. Is there a special diet I have to follow?
3. Can I have this disease without having cancer?
4. When will the weight loss stop? Will I continue to loose weight until I'm all bones? (I've already lost 15 pounds, My brother just passed away from Pancreatic Cancer 3 weeks ago and seeing him suffer like that I'm sure affected my health and weight as well but I just don't want to end looking frail)
5. Besides Prendisone does anyone know of anything else I can take that would help?
6. Has anyone tried an all natural way of treating it (chemical free) if so what did they use and how effective was it?
Thank You,
Fernando Arce
I look forward to hearing from you.

Jump to this post

Good morning thank you very much and yes the pain is really bad I just stress a lot cuz every day I'm thinking it's cancer but I got tested and I don't have cancer so now I'm just hoping for the day it goes away for awhile and lets me rest

REPLY
kimh | @kimh | Dec 22, 2017
In reply to @viva "Hello fernandoparce, I have been following your post for the past two weeks or so and..." + (show)
@viva

Hello fernandoparce, I have been following your post for the past two weeks or so and I am so sorry to hear that you are having such a hard time with this disease. I was diagnosed with MP in April 2016. It's definitely no picnic to deal with. I tried Prednisone 20mg it made me so sick that I just couldn't take it anymore. Things have gotten better because of a serious change in my diet. If I eat right I feel better. I too have loss quite a bit of weight so I understand your concern. Just wanted to let you know that you are not alone! Hopefully you feel better soon!

Jump to this post

Hi Fernando,
Can I ask what pain medication you are on? I am currently on codene-contin, which is a slow release medication that is taken once every 12 hours. It is not a 'quick' relief (At times, I have to top off with a tylenol 3), but gives me some relief in order to live some sort of life. Movement of any kind (even bowel) irritate my condition, so I spend a lot of time resting. It's not ideal, but it helps to control bouts of pain. Also, I have noticed that laying on my right side (where my pain is) also causes more irritation. I hope this helps. Besides learning what treatments my "American cousins" are receiving, I have found peace knowing that others understand what I am going through and that I am not in this alone. David recommended a good book that has also helped me called, How to be Sick by Toni Bernhard which has been helpful.
Kim

REPLY
kimh | @kimh | Dec 22, 2017
In reply to @fernandoparce "Hello, I have a couple of questions about Mesenteric Panniculitis. I was recently diagnosed with this..." + (show)
@fernandoparce

Hello, I have a couple of questions about Mesenteric Panniculitis. I was recently diagnosed with this disease after I was injured in my stomach at work. After about 2 weeks of pain I went in to get a ct scan and this showed up. They have done blood work, exrays and a catscan and it showed no tumors, cyst's or cancer. I just want to get a better understanding of this disease. I read that it is very rare and there aren't to many studies on it. So for the people who do have it, it would be very helpful to hear from you all.
1. Can I die from this disease?
2. Is there a special diet I have to follow?
3. Can I have this disease without having cancer?
4. When will the weight loss stop? Will I continue to loose weight until I'm all bones? (I've already lost 15 pounds, My brother just passed away from Pancreatic Cancer 3 weeks ago and seeing him suffer like that I'm sure affected my health and weight as well but I just don't want to end looking frail)
5. Besides Prendisone does anyone know of anything else I can take that would help?
6. Has anyone tried an all natural way of treating it (chemical free) if so what did they use and how effective was it?
Thank You,
Fernando Arce
I look forward to hearing from you.

Jump to this post

lol I am a teacher off on sick leave.....coincidence??? hahaha

REPLY
kimh | @kimh | Dec 22, 2017
In reply to @fernandoparce "Hello, I have a couple of questions about Mesenteric Panniculitis. I was recently diagnosed with this..." + (show)
@fernandoparce

Hello, I have a couple of questions about Mesenteric Panniculitis. I was recently diagnosed with this disease after I was injured in my stomach at work. After about 2 weeks of pain I went in to get a ct scan and this showed up. They have done blood work, exrays and a catscan and it showed no tumors, cyst's or cancer. I just want to get a better understanding of this disease. I read that it is very rare and there aren't to many studies on it. So for the people who do have it, it would be very helpful to hear from you all.
1. Can I die from this disease?
2. Is there a special diet I have to follow?
3. Can I have this disease without having cancer?
4. When will the weight loss stop? Will I continue to loose weight until I'm all bones? (I've already lost 15 pounds, My brother just passed away from Pancreatic Cancer 3 weeks ago and seeing him suffer like that I'm sure affected my health and weight as well but I just don't want to end looking frail)
5. Besides Prendisone does anyone know of anything else I can take that would help?
6. Has anyone tried an all natural way of treating it (chemical free) if so what did they use and how effective was it?
Thank You,
Fernando Arce
I look forward to hearing from you.

Jump to this post

Stress (I would rather call is dis-stress!) is a huge factor for me as well. Also acceptance that I have this 'thing', which at times knocks me off my feet. I feel as though I am a strong personality and having to accept this 'weakness' has been tough. Throughout this most recent outbreak, I have had to work on accepting myself, shortfalls and all. Maybe we all need time to get off life's treadmill to reflect on our lives....

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