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.

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.

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I think not Kimh! When we choose to dedicate ourselves to these stressful jobs there is always a price! Working so many hours, managing difficult situations, and worrying about broken souls! Yup -worthwhile but the meaning of “stress”! I hope you are able to return to your calling but I understand what that means Kimh! Sending all good thoughts!

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

Thank-you! I do miss the kids and I know that they are missing me. My substitute teacher keeps me updated on all happenings (luckily she was my student teacher last year and knows my students and classroom very well!) and delivers the periodic class made 'get well soon' cards!

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

Rest all you can! Getting a good rest every night really helped me. I literally-when my own kids were older- would get into bed by 8 to watch tv or get marking done to just have my body still. Do you teach a grade? Lucky you have a good sub! Helps loads! I hope you are able to manage returning soon! ❤️ I taught in prison, reform schools, psychiatric hospitals, and regular schools but had the kids that couldn’t manage to cope in regular classes then. Loved them! Tough on the heart strings often though. Retirement is good though. Teachers are always busy-a way of life I think-that continues!! Be well Kimh! Let me know how you are doing! Hugs!

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

Wow! What a career and impact you have had!! I teach in an inner city school (more than 85% on government assistance) and love "my kids" and they know it! I am hoping that this low dose of Prednisone will help me get back in the classroom (at least on part time hours) by February. My gastro specialist felt that that should be a reasonable goal. I teach a grade 4/5 split. Awesome age group for sure! The grade 5's are also the graduating class!

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

You will be missed! -and lucky they found someone to replace you! I’ve learned once you’ve proven your worth in the difficult situation there’s no way they are letting you out!! Think I have taken prednisone too long, too many times ended up hating its side effects and avoid it at all costs now. But without so much stress I’ve generally managed. I don’t have a good doctor so mostly just “manage” until I get into a real strong episode. You will find what works for you I’m sure -to get back to those little ones who need you! Great age! Rest well and lots!!

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

Too funny! Okay, here we go....I just got home from Urgent Care. I have grown some lesion on the knuckle of my left thumb that has been steadily swelling, getting sore and turning red for the past two days despite cleansing, using polysporin and dunking in salt water. I just got word from the doctor that it is a virus (in an awkward place!) that is not healing (may take a couple of weeks) because I am on Prednisone.....lol another side effect....

REPLY
Von, Alumni Mentor | @vdouglas | 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

Hi @fernandoparce , Sorry you have this difficult condition. Bloating is common, it is very uncomfortable and painful. Sometimes it is hard to breathe. Your stomach may be hard. The Prednisone, over time, may correct this. I empathize, and feel sorry that you are going through this. Many of us have gone through the same. Some more than you, some less. That doesn't make it any easier for you I know, but you are not going to die.

Keep doing the best you can. Eat when you can. Do not eat spicy food. Eat as much as what will fit in your hand with some water to drink then see how you feel. May wait two hours then eat the same amount. I could not eat beans or anything that would cause gas.

@fernandoparce , do you have someone with you, to help you, or are you alone?

Von

REPLY
Von, Alumni Mentor | @vdouglas | 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

Ouch! @kimh , that doesn't sound good. I hope it heals quickly for you.

Since you mentioned the PREDNISONE, I have a question for you @kimh or anyone else.
Have you taken the liquid form of Prednisone? If so, how was it tolerated? any nausea? @pcfromfm @poppy73 @lockedavid @doron @carbxbe8206 @denia @jolied @bertbiz
Thank you for your response - I hope everyone is managing
Von

REPLY
PCfromFM | @pcfromfm | Dec 23, 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

No I haven’t tried any liquid form-it has been awhile sine I’ve had to take prednisone. I avoid it at all cost. Didn’t know there was a liquid form. I can’t do any form of corn. Many liquids have a corn sweetener or thickener and that really is bad for me! Interested in hearing about it! Merry Christmas all! Hope the new year brings you all relief and a good year in 2018! Hugs and good thoughts!

REPLY
kimh | @kimh | Dec 23, 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

What??? There's a liquid form??? I wonder if it would make any difference regarding my side effects (weight gain, esophageal spasms, strange hand viruses?) I'd also like to know the benefits of taking Prednisone in a liquid form...

REPLY
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