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.

LS4 / Lisa Schwart Tulsa Oklahoma (FB page) | @lisas444 | Jun 28, 2017
In reply to @hopeful33250 "@chensley638 Here is some information regarding Mesenteric Panniculitis from Mayo's website which you may find helpful,..." + (show)
@hopeful33250

@chensley638 Here is some information regarding Mesenteric Panniculitis from Mayo's website which you may find helpful, http://www.mayoclinic.org/diseases-conditions/mesenteric-lymphadenitis/home/ovc-20214655. Also, please read the posts from others on this page. You might find their experiences helpful as well. Teresa

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Sent you a pm on here ...

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jun 28, 2017
In reply to @hopeful33250 "@chensley638 Here is some information regarding Mesenteric Panniculitis from Mayo's website which you may find helpful,..." + (show)
@hopeful33250

@chensley638 Here is some information regarding Mesenteric Panniculitis from Mayo's website which you may find helpful, http://www.mayoclinic.org/diseases-conditions/mesenteric-lymphadenitis/home/ovc-20214655. Also, please read the posts from others on this page. You might find their experiences helpful as well. Teresa

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@chensley638 Yes, please feel free to update us, as you feel comfortable doing so. We look forward to hearing from you! Teresa

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Kanaaz Pereira, Connect Moderator | @kanaazpereira | Jun 28, 2017
In reply to @chensley638 "I'm anxious & need to vent my concerns. I hope nobody minds. For several years I..." + (show)
@chensley638

I'm anxious & need to vent my concerns. I hope nobody minds.

For several years I have been experiencing episodes of symptoms that last a few days at a time, but that occur every few months. It usually starts with not being able to have a bowel movement for a couple days. That's when I start getting a bit of abdominal pain. When I try to eat or drink, I can't keep anything down. That's when everything gets really bad and I end up in the ER, vomiting food from days prior, that hasn't digested. That has happened 5 times since 2011; though I've had many more episodes than that.

Anyhow, tomorrow I have a GI consult that I requested. As I was going through all my reports, i found one that said I have "mild MP". (If I understand it correctly, its possible for MP to press on my intestines and cause a blockade.) That CT was from November 2016. It was never mentioned to me otherwise. I was told it's "gastrotis", "the flu", "a stomach bug", and "gastroparesis". I have another report that I compared it to from 2015, which doesn't mention ANYTHING about MP. Nor does the one I have from 2011. So... this is new??? I'm only 31 years old!! I thought this was primarily something that older adults develop.

Furthermore, my grandma passed away with Lymphoma a few months ago. Since around that time, I have been experiencing a high WBC and edema with a 10lb weight gain in 3 days (20 lb in 2 weeks; 35in 5 months). Plus I have inflammed lymphnodes and bone pain. I'm SO SICK of being told "it's just the FLU" that, at this point, I would almost rather be told it's lymphoma.

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Hello @chensley638, @seaotter,

Welcome to both of you! I'd like to underline what Teresa mentioned: Connect is a place to vent and express your feelings, and to share experiences so that we may learn from each other – we are so happy to have you as part of the Connect community.

I’d like to introduce you to several other members in this ongoing discussion; please meet @vdouglas @warlick @viva @bakb @doron @billymac65 @croller68 @bertbiz @mardellepoff @billindc @mommasaid @danrofohio @snoopdog @gmeg, to name a few.

@seaotter, @chensley638, I’m sure you have lots of questions, and there’s a great group of people here ready to share their experiences. Ask away.

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seaotter | @seaotter | Jun 28, 2017
In reply to @chensley638 "I'm anxious & need to vent my concerns. I hope nobody minds. For several years I..." + (show)
@chensley638

I'm anxious & need to vent my concerns. I hope nobody minds.

For several years I have been experiencing episodes of symptoms that last a few days at a time, but that occur every few months. It usually starts with not being able to have a bowel movement for a couple days. That's when I start getting a bit of abdominal pain. When I try to eat or drink, I can't keep anything down. That's when everything gets really bad and I end up in the ER, vomiting food from days prior, that hasn't digested. That has happened 5 times since 2011; though I've had many more episodes than that.

Anyhow, tomorrow I have a GI consult that I requested. As I was going through all my reports, i found one that said I have "mild MP". (If I understand it correctly, its possible for MP to press on my intestines and cause a blockade.) That CT was from November 2016. It was never mentioned to me otherwise. I was told it's "gastrotis", "the flu", "a stomach bug", and "gastroparesis". I have another report that I compared it to from 2015, which doesn't mention ANYTHING about MP. Nor does the one I have from 2011. So... this is new??? I'm only 31 years old!! I thought this was primarily something that older adults develop.

Furthermore, my grandma passed away with Lymphoma a few months ago. Since around that time, I have been experiencing a high WBC and edema with a 10lb weight gain in 3 days (20 lb in 2 weeks; 35in 5 months). Plus I have inflammed lymphnodes and bone pain. I'm SO SICK of being told "it's just the FLU" that, at this point, I would almost rather be told it's lymphoma.

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Thank u so much. Its lonely out here with no one to talk to about mp. My dr just says youve had it for along time and no help . Ive had pet scans ct scans to gi dr
And none know what to do reading posts saw someone had low vit d my vit d level was 8 and i am one who siscovered it. Will read more posts maybe we can figure out how to cope with this.
Thanks for listening

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MrsBlue82 | @chensley638 | Jun 28, 2017
In reply to @chensley638 "I'm anxious & need to vent my concerns. I hope nobody minds. For several years I..." + (show)
@chensley638

I'm anxious & need to vent my concerns. I hope nobody minds.

For several years I have been experiencing episodes of symptoms that last a few days at a time, but that occur every few months. It usually starts with not being able to have a bowel movement for a couple days. That's when I start getting a bit of abdominal pain. When I try to eat or drink, I can't keep anything down. That's when everything gets really bad and I end up in the ER, vomiting food from days prior, that hasn't digested. That has happened 5 times since 2011; though I've had many more episodes than that.

Anyhow, tomorrow I have a GI consult that I requested. As I was going through all my reports, i found one that said I have "mild MP". (If I understand it correctly, its possible for MP to press on my intestines and cause a blockade.) That CT was from November 2016. It was never mentioned to me otherwise. I was told it's "gastrotis", "the flu", "a stomach bug", and "gastroparesis". I have another report that I compared it to from 2015, which doesn't mention ANYTHING about MP. Nor does the one I have from 2011. So... this is new??? I'm only 31 years old!! I thought this was primarily something that older adults develop.

Furthermore, my grandma passed away with Lymphoma a few months ago. Since around that time, I have been experiencing a high WBC and edema with a 10lb weight gain in 3 days (20 lb in 2 weeks; 35in 5 months). Plus I have inflammed lymphnodes and bone pain. I'm SO SICK of being told "it's just the FLU" that, at this point, I would almost rather be told it's lymphoma.

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So, the GI doctor didn't seem to think that the MP was a big deal. He said "a little mesenteric inflammation isn't a big concern and yours is mild". He also told me not to dwell or be concerned with the label. He said anyone can get a mild inflammation like this with irritation. He blames the irritation on constipation. Which he blames on a poor diet. Im not sure how that works, since I only eat about 900-1200 calories /day on average. Every day I at 1-2 fresh fruit. I eat lots of veggies, daily. I eat granolla for breakfast with 1% milk. I almost never even get a lunch break, which is why all the healthy food. I'm not certain which part he feels could be causing the constipation. Idk. I even drink about 72oz of water per day.

Anyhow, he's agreed to do an endoscopy to make sure theres nothing "unusual" in my esophagus or stomach, and to do a biposy if there is.

BTW. He seemed more concerned with finding out why I have chronic low Potassium. He also kept asking if I've had a fever or sweats. I said no but after a few hours back at work, I realized I have a big box fan on, every day. I thought it's just cause I run like dog @ work but I'm not certain a of anything anymore. Oh well. Thanks anyhow.

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jun 29, 2017
In reply to @chensley638 "I'm anxious & need to vent my concerns. I hope nobody minds. For several years I..." + (show)
@chensley638

I'm anxious & need to vent my concerns. I hope nobody minds.

For several years I have been experiencing episodes of symptoms that last a few days at a time, but that occur every few months. It usually starts with not being able to have a bowel movement for a couple days. That's when I start getting a bit of abdominal pain. When I try to eat or drink, I can't keep anything down. That's when everything gets really bad and I end up in the ER, vomiting food from days prior, that hasn't digested. That has happened 5 times since 2011; though I've had many more episodes than that.

Anyhow, tomorrow I have a GI consult that I requested. As I was going through all my reports, i found one that said I have "mild MP". (If I understand it correctly, its possible for MP to press on my intestines and cause a blockade.) That CT was from November 2016. It was never mentioned to me otherwise. I was told it's "gastrotis", "the flu", "a stomach bug", and "gastroparesis". I have another report that I compared it to from 2015, which doesn't mention ANYTHING about MP. Nor does the one I have from 2011. So... this is new??? I'm only 31 years old!! I thought this was primarily something that older adults develop.

Furthermore, my grandma passed away with Lymphoma a few months ago. Since around that time, I have been experiencing a high WBC and edema with a 10lb weight gain in 3 days (20 lb in 2 weeks; 35in 5 months). Plus I have inflammed lymphnodes and bone pain. I'm SO SICK of being told "it's just the FLU" that, at this point, I would almost rather be told it's lymphoma.

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@chensley638 We appreciate the update. It sounds as if you are now waiting for the endoscopy to determine if there are any other problems in the digestive tract and esophagus.

As your doctor was concerned about your chronic low Potassium level, I did a search on Mayo's website and came up with this link, http://www.mayoclinic.org/symptoms/low-potassium/basics/definition/sym-20050632. You might read through this and see how it applies to your symptoms. As I read through it, I can understand the doctor's concern. Do you know what your potassium level is? Has the cause of the low potassium level ever been investigated by a physician before?

Teresa

REPLY
MrsBlue82 | @chensley638 | Jun 29, 2017
In reply to @chensley638 "I'm anxious & need to vent my concerns. I hope nobody minds. For several years I..." + (show)
@chensley638

I'm anxious & need to vent my concerns. I hope nobody minds.

For several years I have been experiencing episodes of symptoms that last a few days at a time, but that occur every few months. It usually starts with not being able to have a bowel movement for a couple days. That's when I start getting a bit of abdominal pain. When I try to eat or drink, I can't keep anything down. That's when everything gets really bad and I end up in the ER, vomiting food from days prior, that hasn't digested. That has happened 5 times since 2011; though I've had many more episodes than that.

Anyhow, tomorrow I have a GI consult that I requested. As I was going through all my reports, i found one that said I have "mild MP". (If I understand it correctly, its possible for MP to press on my intestines and cause a blockade.) That CT was from November 2016. It was never mentioned to me otherwise. I was told it's "gastrotis", "the flu", "a stomach bug", and "gastroparesis". I have another report that I compared it to from 2015, which doesn't mention ANYTHING about MP. Nor does the one I have from 2011. So... this is new??? I'm only 31 years old!! I thought this was primarily something that older adults develop.

Furthermore, my grandma passed away with Lymphoma a few months ago. Since around that time, I have been experiencing a high WBC and edema with a 10lb weight gain in 3 days (20 lb in 2 weeks; 35in 5 months). Plus I have inflammed lymphnodes and bone pain. I'm SO SICK of being told "it's just the FLU" that, at this point, I would almost rather be told it's lymphoma.

Jump to this post

Mostly yes. We have done NUMEROUS tests, including kidney ultrasounds, 24hour urine, and blood work, mri, ct, and several others. I determined that the low potassium is a primary cause of my edema and weight gain, which causes my blood pressure spikes, which causes my headaches, which i take medicatiin for, which causes my dizziness... I told my doctor how I felt and he said "good catch". That's what we do. We brainstorm together. Its important to me that we dothis. I cant stand doctors who have that "I'm the doctor, let me figure it out for myself" attitude. I have dagnosed myself and my husband numerous times and brought it to him for opinion. But as a nurse and future nurse practitioner (way in the future), he knows that that's just how I prefer things. After all, every experience is an opportunity to learn.

Anyhow, I am the one who pointed out about the chronic low Potassium. Nobody had ever mentioned it before but I saw a consistency in my lab report that was never addressed. That's when I switched to my current doctor. Though, he put me on potassium supplements thays brought my level up to 3.5 sometimes it even hits 4.0. We still dont know WHY its low. I requested the GI appt to help figure it out. My doc will approve anything i ask for, as long as it's witin reason and I provide a good logic for medical necessity. The lowest its been was 3.2. I know that doesnt seem too low, but that same day, i had 10lb weight gain and 200/100 bp. I took a water pill and the next day my weight was back to normal and bp was 122/75 under all other same circumstances.

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jun 29, 2017
In reply to @chensley638 "I'm anxious & need to vent my concerns. I hope nobody minds. For several years I..." + (show)
@chensley638

I'm anxious & need to vent my concerns. I hope nobody minds.

For several years I have been experiencing episodes of symptoms that last a few days at a time, but that occur every few months. It usually starts with not being able to have a bowel movement for a couple days. That's when I start getting a bit of abdominal pain. When I try to eat or drink, I can't keep anything down. That's when everything gets really bad and I end up in the ER, vomiting food from days prior, that hasn't digested. That has happened 5 times since 2011; though I've had many more episodes than that.

Anyhow, tomorrow I have a GI consult that I requested. As I was going through all my reports, i found one that said I have "mild MP". (If I understand it correctly, its possible for MP to press on my intestines and cause a blockade.) That CT was from November 2016. It was never mentioned to me otherwise. I was told it's "gastrotis", "the flu", "a stomach bug", and "gastroparesis". I have another report that I compared it to from 2015, which doesn't mention ANYTHING about MP. Nor does the one I have from 2011. So... this is new??? I'm only 31 years old!! I thought this was primarily something that older adults develop.

Furthermore, my grandma passed away with Lymphoma a few months ago. Since around that time, I have been experiencing a high WBC and edema with a 10lb weight gain in 3 days (20 lb in 2 weeks; 35in 5 months). Plus I have inflammed lymphnodes and bone pain. I'm SO SICK of being told "it's just the FLU" that, at this point, I would almost rather be told it's lymphoma.

Jump to this post

@chensley638 That is great that you can partner with your doctor, not all doctors are comfortable with a partnership with their patients. Are there any other specialists who work with low potassium levels? Teresa

REPLY
MrsBlue82 | @chensley638 | Jun 29, 2017
In reply to @chensley638 "I'm anxious & need to vent my concerns. I hope nobody minds. For several years I..." + (show)
@chensley638

I'm anxious & need to vent my concerns. I hope nobody minds.

For several years I have been experiencing episodes of symptoms that last a few days at a time, but that occur every few months. It usually starts with not being able to have a bowel movement for a couple days. That's when I start getting a bit of abdominal pain. When I try to eat or drink, I can't keep anything down. That's when everything gets really bad and I end up in the ER, vomiting food from days prior, that hasn't digested. That has happened 5 times since 2011; though I've had many more episodes than that.

Anyhow, tomorrow I have a GI consult that I requested. As I was going through all my reports, i found one that said I have "mild MP". (If I understand it correctly, its possible for MP to press on my intestines and cause a blockade.) That CT was from November 2016. It was never mentioned to me otherwise. I was told it's "gastrotis", "the flu", "a stomach bug", and "gastroparesis". I have another report that I compared it to from 2015, which doesn't mention ANYTHING about MP. Nor does the one I have from 2011. So... this is new??? I'm only 31 years old!! I thought this was primarily something that older adults develop.

Furthermore, my grandma passed away with Lymphoma a few months ago. Since around that time, I have been experiencing a high WBC and edema with a 10lb weight gain in 3 days (20 lb in 2 weeks; 35in 5 months). Plus I have inflammed lymphnodes and bone pain. I'm SO SICK of being told "it's just the FLU" that, at this point, I would almost rather be told it's lymphoma.

Jump to this post

Absolutely. Nephrologist, cardiologist, and endocrinologist to name a few. The GI doctor would like me to see a nephrologist. A kidney doctor.

REPLY
MrsBlue82 | @chensley638 | Jun 29, 2017
In reply to @chensley638 "I'm anxious & need to vent my concerns. I hope nobody minds. For several years I..." + (show)
@chensley638

I'm anxious & need to vent my concerns. I hope nobody minds.

For several years I have been experiencing episodes of symptoms that last a few days at a time, but that occur every few months. It usually starts with not being able to have a bowel movement for a couple days. That's when I start getting a bit of abdominal pain. When I try to eat or drink, I can't keep anything down. That's when everything gets really bad and I end up in the ER, vomiting food from days prior, that hasn't digested. That has happened 5 times since 2011; though I've had many more episodes than that.

Anyhow, tomorrow I have a GI consult that I requested. As I was going through all my reports, i found one that said I have "mild MP". (If I understand it correctly, its possible for MP to press on my intestines and cause a blockade.) That CT was from November 2016. It was never mentioned to me otherwise. I was told it's "gastrotis", "the flu", "a stomach bug", and "gastroparesis". I have another report that I compared it to from 2015, which doesn't mention ANYTHING about MP. Nor does the one I have from 2011. So... this is new??? I'm only 31 years old!! I thought this was primarily something that older adults develop.

Furthermore, my grandma passed away with Lymphoma a few months ago. Since around that time, I have been experiencing a high WBC and edema with a 10lb weight gain in 3 days (20 lb in 2 weeks; 35in 5 months). Plus I have inflammed lymphnodes and bone pain. I'm SO SICK of being told "it's just the FLU" that, at this point, I would almost rather be told it's lymphoma.

Jump to this post

He recommends that my family doctor refer me to an endocrinologist as well. He, as well as my dermatologist, feels that I may have polycystic ovarian syndrome. Although I had already self-diagnosed myself with that several years ago. That, however, would not explain abdominal pain, constipation, vomiting, or any of the other GI symptoms I've had. Though it could explain other things like weight gain, acne, hair loss comma unusual female Cycles Etc. It would not explain low potassium. And the low potassium explains the same symptoms as PCOS.

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