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 was diagnosed 3 weeks ago after being sick for almost 9 months…. we will be traveling from Ohio to Minnesota Jan 20 to see Dr Pardi’s colleague….. hoping for some relief. My ca 125 is 949.1 and my pain is excruciating……..

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@dmaquino

I was diagnosed 3 weeks ago after being sick for almost 9 months…. we will be traveling from Ohio to Minnesota Jan 20 to see Dr Pardi’s colleague….. hoping for some relief. My ca 125 is 949.1 and my pain is excruciating……..

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Hello @dmaquino

Welcome to Mayo Connect. I'm sure you are relieved to finally have a diagnosis after 9 months of pain. I'm also glad to hear that you will be seeing a doctor at Mayo.

If you are comfortable sharing more how was this diagnosed for you?

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@hopeful33250

Hello @dmaquino

Welcome to Mayo Connect. I'm sure you are relieved to finally have a diagnosis after 9 months of pain. I'm also glad to hear that you will be seeing a doctor at Mayo.

If you are comfortable sharing more how was this diagnosed for you?

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In May, I had a 10cm ovarian mass removed…. was cancerous but was contained…. I still had severe belly pain after several weeks….. my biopsies were sent to Harvard and Michigan because they were abnormal! I spent a week in the hospital June, July, and Aug with a second surgery that revealed an abscess on the outside of my colon…… treated w abx but as soon as meds stopped, pain returned…. surgeon started prednisone and referred to Cleveland Clinic for GI. Numerous invasive test all for inside of colon came back normal …. saw 2 more GI docs. No help…. I’ve had 8 ct scans since May …. saw new GI 3 weeks ago and she diagnosed from first biopsy… she said the mass had abnormal mesentery cells in it…. it also showed on all CT’s! No one really knows how to treat this from what I can see… we are being seen at Mayo fir Dr Pardi, who does see and treat this! Looking for relief as the pain is excruciating……..

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@dmaquino

In May, I had a 10cm ovarian mass removed…. was cancerous but was contained…. I still had severe belly pain after several weeks….. my biopsies were sent to Harvard and Michigan because they were abnormal! I spent a week in the hospital June, July, and Aug with a second surgery that revealed an abscess on the outside of my colon…… treated w abx but as soon as meds stopped, pain returned…. surgeon started prednisone and referred to Cleveland Clinic for GI. Numerous invasive test all for inside of colon came back normal …. saw 2 more GI docs. No help…. I’ve had 8 ct scans since May …. saw new GI 3 weeks ago and she diagnosed from first biopsy… she said the mass had abnormal mesentery cells in it…. it also showed on all CT’s! No one really knows how to treat this from what I can see… we are being seen at Mayo fir Dr Pardi, who does see and treat this! Looking for relief as the pain is excruciating……..

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@dmaquino
Thank you for sharing more regarding the difficult time that you had finding a diagnosis. From other Connect Members, I have learned that this disorder is difficult to diagnose. I do understand that Mayo has some great treatments for this and other Members have found relief. I hope that this is your experience as well.

I would be interested in following your treatment. So as you are comfortable doing so, will you post again and let me know how you are doing after your appointment on the 20th and will you let me know if you find some relief?

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@dmaquino

Here are some Youtube videos about Mesenteric Panniculitis, Sclerosing Mesenteritis provided by Mayo Clinic

https://www.youtube.com/watch?v=jPAS1skpJT4 and

Perhaps they will be helpful to you in understanding this rare disorder.

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hey, 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?. 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.

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Thanks for your post about your struggles finding a diagnosis and treatment plan, @cartagena13. Your story is so similar to others who finally get diagnosed with this problem. I am glad to hear that the Prednisone has helped somewhat and that you are bit more comfortable now.

I hope that others in our group might be able to help you find a GI doctor in NY. Will you keep posting and provide updates on your progress?

Have your eating habits been adjusted as well? What type of diet do you follow?

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Hi Folks,

Name is Mick, from Reading, UK. 66 years old (almost 67!)
I had a gastroscopy and CT scan before Christmas because of abdominal discomfort/pain. I've had episodic heartburn/reflux for 10+ years, well controlled with Lanzoprazole.
The gastroscopy shows mild gastritis in the pylorus region, and a small hiatus hernia.
I got the CT scan results yesterday (phoned up and the letter had just been written!). I have mesenteric panniculitis!
Seeing my GI consultant on Monday 14th for more details and treatment plan.

Question: No. 1
I am allergic to penicillin, aspirin, food additives based on azo (coal tar) dyes. I am assuming that non-steroidal anti-inflammatory drugs will also affect me?

Question No. 2
I also have normal tension, open angle glaucoma. Steroids can raise the eye pressure (IOP). My left eye has had a trabeculectomy so shouldn't be a problem (the IOP is well down and in control), but my right eye is marginal on IOP even with drops.

Seems from this my treatment options may be somewhat limited.

Fortunately my eye consultant and GI consultant work in the same offices so hopefully they can talk to each other.

Don't let anyone tell you that getting old is great! It isn't!!!

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@sneezy24

Hi Folks,

Name is Mick, from Reading, UK. 66 years old (almost 67!)
I had a gastroscopy and CT scan before Christmas because of abdominal discomfort/pain. I've had episodic heartburn/reflux for 10+ years, well controlled with Lanzoprazole.
The gastroscopy shows mild gastritis in the pylorus region, and a small hiatus hernia.
I got the CT scan results yesterday (phoned up and the letter had just been written!). I have mesenteric panniculitis!
Seeing my GI consultant on Monday 14th for more details and treatment plan.

Question: No. 1
I am allergic to penicillin, aspirin, food additives based on azo (coal tar) dyes. I am assuming that non-steroidal anti-inflammatory drugs will also affect me?

Question No. 2
I also have normal tension, open angle glaucoma. Steroids can raise the eye pressure (IOP). My left eye has had a trabeculectomy so shouldn't be a problem (the IOP is well down and in control), but my right eye is marginal on IOP even with drops.

Seems from this my treatment options may be somewhat limited.

Fortunately my eye consultant and GI consultant work in the same offices so hopefully they can talk to each other.

Don't let anyone tell you that getting old is great! It isn't!!!

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Morning Mr @sneezy24-thank you for my morning smile. Getting older and these “golden” years-you are most correct-not do easy to juggle! I am 69 and my lifetime motto of keep moving, keep smiling has definitely been challenged. I am in Canada but hope you can find Docs who help. Sounds like the Mayo is the best of the best! This site has proven to help me not feel alone and get suggestions to try. I have -over many years-found a routine of foods and drugs to eliminate, understand the influence of stress and improved my amount of rest substantially to help with this crazy disease. Sending good thoughts your way!

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Hello all. I was diagnosed last year with Mesenteric Panniculitis after a doctor decided to do a ct instead of ultrasounding my gallbladder. My Mom found me this page and have been reading on it for a year. I live in Michigan and have state insurance so I was finally able to go to U of M. They did another ct and now he says I don’t have it?!?!?!?!? When I first started reading the posts on here I was relieved because all the symptoms I was having all of you were too , didn’t feel like a freak anymore. I still cannot eat , so far 20lb loss in 4m, constant pain right under where my ribs separate and the awful stomach bloating. I become so weak and tired after a fit. I know I was is a full fledged fit (uncontrolled pain, vomiting and diarrhea) when they ran the ct on me. I was admitted and nurse said I was on a very high dose of morphine and I was still in pain, just manageable. My question is, has anyone else have this diagnosis taken back? And if so what do they say now? I’m left at the same place I was before my diagnosis, all these problems and no name for it

REPLY
@sneezy24

Hi Folks,

Name is Mick, from Reading, UK. 66 years old (almost 67!)
I had a gastroscopy and CT scan before Christmas because of abdominal discomfort/pain. I've had episodic heartburn/reflux for 10+ years, well controlled with Lanzoprazole.
The gastroscopy shows mild gastritis in the pylorus region, and a small hiatus hernia.
I got the CT scan results yesterday (phoned up and the letter had just been written!). I have mesenteric panniculitis!
Seeing my GI consultant on Monday 14th for more details and treatment plan.

Question: No. 1
I am allergic to penicillin, aspirin, food additives based on azo (coal tar) dyes. I am assuming that non-steroidal anti-inflammatory drugs will also affect me?

Question No. 2
I also have normal tension, open angle glaucoma. Steroids can raise the eye pressure (IOP). My left eye has had a trabeculectomy so shouldn't be a problem (the IOP is well down and in control), but my right eye is marginal on IOP even with drops.

Seems from this my treatment options may be somewhat limited.

Fortunately my eye consultant and GI consultant work in the same offices so hopefully they can talk to each other.

Don't let anyone tell you that getting old is great! It isn't!!!

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@sneezy24

Hello Mick and welcome to Mayo Connect!

You are right about the aging process, it certainly can be tough, especially when multiple health challenges seem to hit at once. It sounds like you have maintained a good attitude and you are working with your doctors to find relief. Keep that up!

The questions you have asked in your post might best be addressed by your doctors. As you may be aware, here on Connect most of us are not medical professionals, just patients like yourself. So, we cannot answer medical questions but we can offer our own suggestions as fellow patients who travel down the same road. So, as you read the posts in this discussion group you will see some of the things that people have learned about dealing with mesenteric panniculitis. You will read about dietary suggestions as well as meds that have helped others and other lifestyle changes that people have made in order to deal better with this disorder. I would also encourage you to watch the two videos in this discussion that were posted a day or so ago. The first one recounts a patient's own experience.

Given the fact that you also have Glaucoma, I would encourage you to also visit a discussion on Eye Conditions. Here is the link, https://connect.mayoclinic.org/group/eye-conditions/tab/discussions/?pg=4#group-507-activitystream.

I would be interested in an update on what suggestions that doctor has for you about dealing with this new diagnosis. Will you post again after your appointment on the 14th?

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@tjakgang

Hello all. I was diagnosed last year with Mesenteric Panniculitis after a doctor decided to do a ct instead of ultrasounding my gallbladder. My Mom found me this page and have been reading on it for a year. I live in Michigan and have state insurance so I was finally able to go to U of M. They did another ct and now he says I don’t have it?!?!?!?!? When I first started reading the posts on here I was relieved because all the symptoms I was having all of you were too , didn’t feel like a freak anymore. I still cannot eat , so far 20lb loss in 4m, constant pain right under where my ribs separate and the awful stomach bloating. I become so weak and tired after a fit. I know I was is a full fledged fit (uncontrolled pain, vomiting and diarrhea) when they ran the ct on me. I was admitted and nurse said I was on a very high dose of morphine and I was still in pain, just manageable. My question is, has anyone else have this diagnosis taken back? And if so what do they say now? I’m left at the same place I was before my diagnosis, all these problems and no name for it

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Hello @tjakgang and welcome to Mayo Connect,

I am sorry to hear of your constant symptoms and that you are now lacking a diagnosis as well. You must feel very frustrated. When you were formerly diagnosed with Mesenteric Panniculitis what type of treatment were you getting? Did it help?

As you read about the experiences of others, many people have not had a correct diagnosis for a long time. Did the doctors at U of M offer any suggestions to treat your symptoms or suggest any diagnosis for these symptoms? Have you had a biopsy or colonoscopy done yet?

These are all questions to think about. At Mayo Connect, we are not usually medical professionals, just patients like yourself, so we cannot offer diagnoses, just share our own experiences and perhaps help you ask the right questions of your medical team.

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