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 20, 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 im just losing more weight. But now when I see my skin hanging from my side of my stomach it gets me very nervous and is giving me anxiety.

REPLY
fernandoparce | @fernandoparce | Dec 20, 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

Just wondering after he eats all your fat what happens next

REPLY
Von, Alumni Mentor | @vdouglas | Dec 20, 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

Hello @fernandoparce

Sorry you are losing so much weight. I have had that experience and it is very concerning. I wish I could help more but I am not a doctor. The Mayo Clinic has the best doctors for treating this if you ever consider that a possibility.

I do not know for sure that you are taking Prednisone or another generic form of it.
Prednisone is medicine to help reduce the inflammation caused by the Mesenteric Panniculitis. Once the inflammation is reduced you may be able to eat better and gain weight back. If the Prednisone is not working your doctor may prescribe another medicine or combination of medicines.

I ate food that I was able to keep down and didn't upset my stomach or cause gas. I would eat small portions as often as I could without over doing it.
When I was able to keep food down I ate white rice, instant oatmeal, canned peaches, cottage cheese (watch the dairy) maybe chicken broth soup, soft and bland. I am diabetic so I ate it all without sugar.

You will have my prayers, I hope you begin to feel better soon,
Von

What are you able to eat Fernando? Has your doctor suggested a diet plan?

REPLY
Von, Alumni Mentor | @vdouglas | Dec 20, 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

@fernandoparce

You just feel that way because you are very sick and losing weight. You have to remain positive.
I am sorry to hear that you recently lost your brother, you are going through a very difficult time right now. You have to be very strong.

I also thought it was going to kill me. I can't imagine how difficult it is for you.

Please notify your doctor and let him know if you are not able to take the pills. Prednisone is a very powerful pill and "can" work wonders for you. It could make you feel a lot better after taking it the way the doctor instructed.

I hope and pray that you feel better soon,
Von

REPLY
kimh | @kimh | Dec 21, 2017

Maybe you should be speaking to your doctor about your dosage. In my case, during this bout of MP, the prednisone therapy has not been aggressive enough (due to other side effects, as per my doctor's instructions). Unfortunately, this lower dosage may have caused this bout to last longer and feel more severe. I'm not sure why you are not taking your doctor's advice entirely. Maybe there are trust issues that need to be confronted?

REPLY
3 replies
fernandoparce | @fernandoparce | Dec 21, 2017
In reply to @kimh "Maybe you should be speaking to your doctor about your dosage. In my case, during this..." + (show)
@kimh

Maybe you should be speaking to your doctor about your dosage. In my case, during this bout of MP, the prednisone therapy has not been aggressive enough (due to other side effects, as per my doctor's instructions). Unfortunately, this lower dosage may have caused this bout to last longer and feel more severe. I'm not sure why you are not taking your doctor's advice entirely. Maybe there are trust issues that need to be confronted?

Jump to this post

He told me to start at 40 but I tried 20 and if it gets me very nauseated so 40 probably make me start throwing up right now I'm at 20 again and I feel pretty so I'll stay at 20 for a week till he gets back from his vacation

REPLY
viva | @viva | Dec 21, 2017

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!

REPLY
9 replies
kimh | @kimh | Dec 21, 2017
In reply to @kimh "Maybe you should be speaking to your doctor about your dosage. In my case, during this..." + (show)
@kimh

Maybe you should be speaking to your doctor about your dosage. In my case, during this bout of MP, the prednisone therapy has not been aggressive enough (due to other side effects, as per my doctor's instructions). Unfortunately, this lower dosage may have caused this bout to last longer and feel more severe. I'm not sure why you are not taking your doctor's advice entirely. Maybe there are trust issues that need to be confronted?

Jump to this post

Hi Fernando,
I also experience a lot of nausea, but I don't throw up. It's more of a choking feeling and am not sure if it is because of the MP or the prednisone. At this point, that feeling has graduated to esophageal spasms. For the nausea, my doctor put me on Ondansetron (4mg., three times daily) and for the spasms, I am on Pantoprazole (40 mg. twice daily as well as Nitrolingual pump spray for acute attacks). I'm not sure if these medications are universal (as I am from Canada). Unfortunately, Prednisone has helped me with MP in the past, but also brings 'unwanted gifts' with prolonged use (at least for me). I hope this information will be helpful for you. I wish you well.

REPLY
fernandoparce | @fernandoparce | Dec 21, 2017
In reply to @kimh "Maybe you should be speaking to your doctor about your dosage. In my case, during this..." + (show)
@kimh

Maybe you should be speaking to your doctor about your dosage. In my case, during this bout of MP, the prednisone therapy has not been aggressive enough (due to other side effects, as per my doctor's instructions). Unfortunately, this lower dosage may have caused this bout to last longer and feel more severe. I'm not sure why you are not taking your doctor's advice entirely. Maybe there are trust issues that need to be confronted?

Jump to this post

Thank you

REPLY
PCfromFM | @pcfromfm | 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.

Jump to this post

Hello @fernandoparce . I’m trying to catch up. Sounds like you are having a difficult time. We know what’s that like. I too, like Von have resorted to boiled chicken, white rice, in small quantities. But I found I must eat. I drank warmed apple juice and water, it seemed to help my appetite just a bit. On a big day I’d try some mashed potatoes - just a bit with ever so little butter. Find a treat you will enjoy that is bland and has no chemicals, no spices, try to include a little protein for tissue repair. Only add one small food at a time until you are feeling less pain and maintaining your weight. I send good thoughts and hugs that you turn it around soon!

REPLY
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