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

Hello all!

Just diagnosed with this condition today as a matter of fact. Didn’t get a lot of info from the doctor. Going on a prednisone regiment. I’ve read through some of the comments here and will continue. Which leads me to my questions…

It seems the prednisone works well for most. Does anyone have experience with it NOT working and what steps occurred next for you?

Did anyone notice certain foods that made it worse than others?

Anything you feel is really important you would share to someone that just discovered they have this condition?

Thank you all in advance. 🙂

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Due to my CDIFF, I can definitely feel that there is a problem with my small intestines. I have 4 GIs and they know very little about the small intestine. Been bringing it up for nine years. I was the one that educated them that it only made sense CDIFF affects the small intestine. Finally, GIs agree. How were you diagnosed…through endoscopy. What test is needed for diagnosis.

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Hello @obert22,
I’m so sorry to hear about your diagnosis, but we’re glad to have you on Connect.

@bertbiz, @billindc, @lisas444, @billymac65, @snoopdog, @hardclose, @doron, @mjg1160, do you have any advice for @ober22?

I would also like to introduce you to @vdouglas, @amyd, @danrofohio, @vmc123, @jlap84058 who have discussed prednisone and its efficacy while dealing with Mesenteric Panniculitis, Schlerosing Mesenteries.

@obert22, what symptoms have you experienced that led to this diagnosis?

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Hi @obert22, So sorry about your diagnosis. This is a great place to get information. I was diagnosed after having a CT Scan in May of this year. The radiologist that read my scan had never seen a case of MP before, only read about MP. I started on 40mg of Prednisone and was tapered off. It worked great for me. I was on it for a couple of months. All of my inflammation disappeared, as was shown on my second CT Scan. When I was first diagnosed I had a lot of soup, mostly clear broth and made Vanilla Kefir and banana smoothies adding cinnamon for taste. The doctor suggested white rice, white bread, pasta and eggs to start with. After that I found that the FODMAP diet was really helpful. http://www.ibsdiets.org/fodmap-diet/fodmap-food-list/ I joke that it’s like playing Russian Roulette with food. When you want to introduce something new into your diet, you have to do it slowly. I am eating some cooked greens, like spinach and fresh steamed artichokes, although the FODMAP says artichokes are a no no. I am no longer eating anything with corn (I miss popcorn the most) or anything with onions (I miss sauteed onions). I have tried scallions and shallots, those seem to be better. When I cook I add chives and powdered garlic, onion powder and paprika. Nothing too spicy, or I suffer a bit. That’s part of the Russian Roulette of it all. I have found that eating smaller meals, and not eating after 7:30 is helpful. For me, exercise is key. I walk on the treadmill, or if it’s not freezing here in MN, walk outside for 35-45 minutes every morning. I have a job where I sit a majority of the day, so I try to get up and stretch so that I’m not slouching forward squishing my insides. I get a good 6-7 hours of sleep every night. (I’m starting to sound like a bore). But rest, exercise and being really careful how much and what I eat has helped me feel better. The only thing that happened from taking the Prednisone is I have had some hair loss, but that seems to be subsiding a bit. Having this group to communicate with has also been a great resource. So that’s my story and I hope it’s helpful for you.

Roberta

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Thanks for your prompt replies.

I have been suffering with issues for some time. Nausea, diarrhea, headaches, fatigue, stomach distention, pain in my right side. But out always seemed to subside or I at least dealt with it. Monday morning I woke up at 3 AM in a lot of pain and I was really sick. I finally broke down later in the day and went to the ER fearing an appendix issue. Ultrasound and ct scan didn’t show anything so they sent me home. I started to feel a little better… And then ate. I was miserable again. Back to my primary doctor for labs. Then I was back today for follow up. Did another ct scan this time with contrast and there it was. Matched my symptoms perfectly. So in the prednisone for a few weeks to see if we get any improvement and probably a referral to a GI after the holidays.

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@obert22

Hello all!

Just diagnosed with this condition today as a matter of fact. Didn’t get a lot of info from the doctor. Going on a prednisone regiment. I’ve read through some of the comments here and will continue. Which leads me to my questions…

It seems the prednisone works well for most. Does anyone have experience with it NOT working and what steps occurred next for you?

Did anyone notice certain foods that made it worse than others?

Anything you feel is really important you would share to someone that just discovered they have this condition?

Thank you all in advance. 🙂

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Hello @obert22, Welcome to this site. I hope you are not in too much pain since that is what usually leads to a CT and diagnosis. Sounds like your Dr.’s are not wasting a lot of time, that’s good. I have not taken Prednisone but as you mentioned it can work quickly and can work well. Getting a handle on the inflammation seems to be the main issue in the beginning. Something I would recommend is not to eat large meals that fill your belly. Also avoid foods that create gas and bloating which may lead to some painfull hours to follow. Read through the thread from the beginning, there are many suggestions on Diet.One thing I would share is get a copy of any test reports you have had. No big hurry but it’s easier if done soon. Get a copy of your CT from the radiologist if that is what you had. I use those plastic binder inserts that you can just drop reports
into. The second thing is if you don’t feel something is right get a second opinion. You are at this site because you are being proactive which is the way you need to be. If anyone ever mentions operating, I would suggest a second opinion for sure.I hope this helps for a start. It would be helpful to others if you let us know how you progress.Best wishes and I hope all works out well for you.@vdouglas

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Hi, my name is Dennis and I have recently been diagnosed with mesenteric panniculitis. I even went for a 2nd opinion and it was further confirmed by them as well. I am not one who would normally join a chat group as I am a pretty private person when it comes to my health concerns. But, I felt it was imperative to reach out of my comfort zone and join your group as I am at a loss as what to do. My primarary care physician has never heard of this and has pretty much given up and handed me info about it and told me to go see a specialist. I have gotten an appt with a GI in a week.
I am extremely fatigued, heavy limbs, pain in my abdomen and bloating. My wife is battling stage 4 inflammatory breast cancer and I have been her primary caregiver. So, our combined depressive moods have been growing each day. I don’t know who to turn to or contact to speak to. I know I have to change primary care physicians but quite frankly don’t have the energy to go thru the steps to do this. I will do it because I have to take care of and provide for my family. I also don’t know what to tell my employer, as no one has ever heard of this disease, and at this time I cannot work.
If anyone has any advice for me I would appreciate it.
Thank you

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@dennisl27

Hi, my name is Dennis and I have recently been diagnosed with mesenteric panniculitis. I even went for a 2nd opinion and it was further confirmed by them as well. I am not one who would normally join a chat group as I am a pretty private person when it comes to my health concerns. But, I felt it was imperative to reach out of my comfort zone and join your group as I am at a loss as what to do. My primarary care physician has never heard of this and has pretty much given up and handed me info about it and told me to go see a specialist. I have gotten an appt with a GI in a week.
I am extremely fatigued, heavy limbs, pain in my abdomen and bloating. My wife is battling stage 4 inflammatory breast cancer and I have been her primary caregiver. So, our combined depressive moods have been growing each day. I don’t know who to turn to or contact to speak to. I know I have to change primary care physicians but quite frankly don’t have the energy to go thru the steps to do this. I will do it because I have to take care of and provide for my family. I also don’t know what to tell my employer, as no one has ever heard of this disease, and at this time I cannot work.
If anyone has any advice for me I would appreciate it.
Thank you

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Dennis, sent you a pm.

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My experience with Crohn’s, inflammation, intestinal wall inflammation, and inflammation pain. All are products of the liver. My knowledge is based on a 1960 treatment in Italy. My liver was cleaned and had no pain or inflammation for 3 years after two week treatment. If you are eating bread that welcomes inflamation. I can now play with inflamation and its pain. My medicine is raw vegetables. Today I made a salad with arugula, zucchini, broccoli, avocado, spinach, and tomatoes. With olive oil and lemon as dressing. Within one hour I feel the lower of the pain if it is almost all gone. I ate few apricots they usually have preservatives and I felt the slow pain on my hands. The liver is a super intelligent organ and produces a lot of illnesses. If you learn how to work with it you can regain all your health. For 1 1/2 year now I took control of my health. I learned that the liver likes vegetables specially raw. I have tested multiple times and yes I agree with the experts since it works. What you put in your mouth is effecting your health. Also stress is a big contributor. Check DrBerg.com have a lot of YouTube videos explaining how the system works. Learn about food and stress that is your healthier future.

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@dennisl27

Hi, my name is Dennis and I have recently been diagnosed with mesenteric panniculitis. I even went for a 2nd opinion and it was further confirmed by them as well. I am not one who would normally join a chat group as I am a pretty private person when it comes to my health concerns. But, I felt it was imperative to reach out of my comfort zone and join your group as I am at a loss as what to do. My primarary care physician has never heard of this and has pretty much given up and handed me info about it and told me to go see a specialist. I have gotten an appt with a GI in a week.
I am extremely fatigued, heavy limbs, pain in my abdomen and bloating. My wife is battling stage 4 inflammatory breast cancer and I have been her primary caregiver. So, our combined depressive moods have been growing each day. I don’t know who to turn to or contact to speak to. I know I have to change primary care physicians but quite frankly don’t have the energy to go thru the steps to do this. I will do it because I have to take care of and provide for my family. I also don’t know what to tell my employer, as no one has ever heard of this disease, and at this time I cannot work.
If anyone has any advice for me I would appreciate it.
Thank you

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Hi Dennis Welcome, you made a good choice to reach out on this site. This is out of my comfort zone also but I was compelled to do it just like you. Your situation is a heavy one to bear. Not many have to deal with two major illness in a family, that is tough. The biggest part of getting through all of this is for both of you to stay as positive as you can and as healthy as you can despite your challenges.
All of the advice I would offer you cannot be put into this one response. I do not know your entire situation. I do not even know if I can help but I’m sure going to try.
First, if you absolutely cannot work, contact your HR Manager or Manager at work, apply for family medical leave FMLA. Secure your job and health care benefits. Use your Vacation and sick leave first if you have those benefits. Tell your employer your situation the best you can. Use the information that your Doctor gave you describing Mesenteric Panniculitis.
I’m going out on a limb but your wife should be entitled to Medicare/Medicaid and Social Security benefits if she doesn’t have that already. Medicare/Medicaid should help your wife/you with home care.You absolutely need a family member or friend to help you arrange this. Ask them for help. If you do not have a family member available call your Pastor or someone you know from Church. If you do not belong to a Church and no one to reach out to Let me know.
Probably a lot of what you read about MP (even on this site) is going to sound very scary, forget that. How are you right now? That’s what is really important. Are you able to manage? if you are able to manage, focus on the above. Once you have help you can focus on systematically knocking out some issues of your illness.
Here is what to expect. I am not a Doctor, but right now I’m going to tell you that what you have is an inflammation in the middle of your body. It can cause pain and bloating and lack of energy as you have described. It could get worse or stay the same. It could get better as did mine after a period of time. If your symptoms are very bad you may need medication to reduce the inflammation. You may need pain medication. This is a basic explanation which is what you need to know right now. Read through this site and follow the diet that is recommended. If you cannot find it I will copy it for you. Your diet should help with the bloating and pain. Eat small soft, mild meals. I ate things like cottage cheese, oatmeal etc.

Let me know how things go, I’ll pray for your family.
Von (vdouglas)

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@dennisl27

Hi, my name is Dennis and I have recently been diagnosed with mesenteric panniculitis. I even went for a 2nd opinion and it was further confirmed by them as well. I am not one who would normally join a chat group as I am a pretty private person when it comes to my health concerns. But, I felt it was imperative to reach out of my comfort zone and join your group as I am at a loss as what to do. My primarary care physician has never heard of this and has pretty much given up and handed me info about it and told me to go see a specialist. I have gotten an appt with a GI in a week.
I am extremely fatigued, heavy limbs, pain in my abdomen and bloating. My wife is battling stage 4 inflammatory breast cancer and I have been her primary caregiver. So, our combined depressive moods have been growing each day. I don’t know who to turn to or contact to speak to. I know I have to change primary care physicians but quite frankly don’t have the energy to go thru the steps to do this. I will do it because I have to take care of and provide for my family. I also don’t know what to tell my employer, as no one has ever heard of this disease, and at this time I cannot work.
If anyone has any advice for me I would appreciate it.
Thank you

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Hello @dennisl27,
I can only imagine the pain you’re going through, but I’m so glad you joined this discussion on Connect. You will see that there is a wonderful community here, ready to offer the support you need right now.

@bertbiz, @billindc, @lisas444, @billymac65, @snoopdog, @hardclose, @doron, @mjg1160, @obert22, could you please offer some advice and insight for @dennisl27?

Our health plays such a vital role in so many other aspects of our lives; once you see the GI, and he confirms the diagnosis, do consider letting your employer speak to the doctor? Are you able to call or contact The State Disability Council in your state? They often have information and programs available for people experiencing an illness such as yours.

@dennisl27, as you embark on this tough journey, not only as a patient, but as a caregiver for your wife, I would sincerely encourage you to look at the Caregivers group, here: http://mayocl.in/2h1ttpY
I’m sure you will find it a great resource and source of comfort.

How are you managing your symptoms, now?

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@dennisl27

Hi, my name is Dennis and I have recently been diagnosed with mesenteric panniculitis. I even went for a 2nd opinion and it was further confirmed by them as well. I am not one who would normally join a chat group as I am a pretty private person when it comes to my health concerns. But, I felt it was imperative to reach out of my comfort zone and join your group as I am at a loss as what to do. My primarary care physician has never heard of this and has pretty much given up and handed me info about it and told me to go see a specialist. I have gotten an appt with a GI in a week.
I am extremely fatigued, heavy limbs, pain in my abdomen and bloating. My wife is battling stage 4 inflammatory breast cancer and I have been her primary caregiver. So, our combined depressive moods have been growing each day. I don’t know who to turn to or contact to speak to. I know I have to change primary care physicians but quite frankly don’t have the energy to go thru the steps to do this. I will do it because I have to take care of and provide for my family. I also don’t know what to tell my employer, as no one has ever heard of this disease, and at this time I cannot work.
If anyone has any advice for me I would appreciate it.
Thank you

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Hi Dennis,
I am so sorry to hear of what is happening to you and your wife. I agree with everything @vdouglas is saying. The FODMAP diet helped me a lot. I’m sure everyone on this thread has seen me post a link. So I will post it again. http://www.dietvsdisease.org/diy-low-fodmap-diet/ The diet says it’s for IBS, but it’s for MP, too. Smaller meals are recommended, When I was first diagnosed I was eating chicken broth, adding chicken little by little to it. I made Kefir and banana smoothies adding cinnamon. That seemed very soothing. I stopped eating anything that had corn in it. I’ve tried several different vegetable, one at a time. Asparagus is not one that I can eat anymore, or onions, either. But through trial and error (I call it Russian Roulette) I’ve found that I can add some greens (like spinach and steamed artichokes) and not have any problems. It takes a lot of patience to figure things out. You have to find a doctor that is familiar with MP.

I wish you and your wife all the best. You’ve found a great place to reach out. We’re all here to do what we can.

@bertbiz

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@dennisl27

Hi, my name is Dennis and I have recently been diagnosed with mesenteric panniculitis. I even went for a 2nd opinion and it was further confirmed by them as well. I am not one who would normally join a chat group as I am a pretty private person when it comes to my health concerns. But, I felt it was imperative to reach out of my comfort zone and join your group as I am at a loss as what to do. My primarary care physician has never heard of this and has pretty much given up and handed me info about it and told me to go see a specialist. I have gotten an appt with a GI in a week.
I am extremely fatigued, heavy limbs, pain in my abdomen and bloating. My wife is battling stage 4 inflammatory breast cancer and I have been her primary caregiver. So, our combined depressive moods have been growing each day. I don’t know who to turn to or contact to speak to. I know I have to change primary care physicians but quite frankly don’t have the energy to go thru the steps to do this. I will do it because I have to take care of and provide for my family. I also don’t know what to tell my employer, as no one has ever heard of this disease, and at this time I cannot work.
If anyone has any advice for me I would appreciate it.
Thank you

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Thank you so much Von! You have given me a lot of encouragement and hope! I am working with my employer now on my leave of absence. I should mention that I also see a cardiologist for my BP as it has been consistently in the 160’s – 180’s and I keep a journal for them so they can adjust the meds they have me on to treat this. I saw her yesterday and she has initiated my LOA so I can address my BP as well as my MP (with my GI). They are trying to identify the reason for my BP spike, as it seems to have come about at the same time as the MP symptoms. As a side note…..if anyone has any information if there is a direct relationship between BP and MP I would greatly appreciate it. My cardiologist did not know and I cannot find a lot of information on the internet about this. My wife is currently on social security disability, so you were right about her qualifying for that.
We do have an Aunt that we call on for assistance and she has been a great help!
My primary symptoms are the extreme fatigue, headaches and abdominal pain. I will be able to manage those until I see my GI next week. We are taking one day at a time and trying to stay as positive as possible. But it has been difficult during this Christmas season.
Again, thank you so much for your help and if you have anything else for me please send it at your convenience.
Dennis

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@dennisl27

Hi, my name is Dennis and I have recently been diagnosed with mesenteric panniculitis. I even went for a 2nd opinion and it was further confirmed by them as well. I am not one who would normally join a chat group as I am a pretty private person when it comes to my health concerns. But, I felt it was imperative to reach out of my comfort zone and join your group as I am at a loss as what to do. My primarary care physician has never heard of this and has pretty much given up and handed me info about it and told me to go see a specialist. I have gotten an appt with a GI in a week.
I am extremely fatigued, heavy limbs, pain in my abdomen and bloating. My wife is battling stage 4 inflammatory breast cancer and I have been her primary caregiver. So, our combined depressive moods have been growing each day. I don’t know who to turn to or contact to speak to. I know I have to change primary care physicians but quite frankly don’t have the energy to go thru the steps to do this. I will do it because I have to take care of and provide for my family. I also don’t know what to tell my employer, as no one has ever heard of this disease, and at this time I cannot work.
If anyone has any advice for me I would appreciate it.
Thank you

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Hello!
I am managing my symptoms for the pain and headaches with tramadol, but it really doesn’t do much for me. I do not know what to do for the fatigue and heavy limbs except to lay down and rest. This has been very debilitating so if you have any ideas on this that would be great!
I will look into the caregiver group that you mentioned that sounds like a great group as well.
For the short period of time that I have been a member of this group I already feel better knowing that there are others that have been thru the same things I am experiencing.
Thank you for the great advice as I embark on this journey and for letting me know that I am “not” alone.

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@dennisl27

Hi, my name is Dennis and I have recently been diagnosed with mesenteric panniculitis. I even went for a 2nd opinion and it was further confirmed by them as well. I am not one who would normally join a chat group as I am a pretty private person when it comes to my health concerns. But, I felt it was imperative to reach out of my comfort zone and join your group as I am at a loss as what to do. My primarary care physician has never heard of this and has pretty much given up and handed me info about it and told me to go see a specialist. I have gotten an appt with a GI in a week.
I am extremely fatigued, heavy limbs, pain in my abdomen and bloating. My wife is battling stage 4 inflammatory breast cancer and I have been her primary caregiver. So, our combined depressive moods have been growing each day. I don’t know who to turn to or contact to speak to. I know I have to change primary care physicians but quite frankly don’t have the energy to go thru the steps to do this. I will do it because I have to take care of and provide for my family. I also don’t know what to tell my employer, as no one has ever heard of this disease, and at this time I cannot work.
If anyone has any advice for me I would appreciate it.
Thank you

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Hi again @dennis127
We are all glad to help you any way we can.

It sounds like you have things going in the right direction, that’s great! I also take Tramadol (50mg) and you are right about it not doing much for pain. I was told by one of my Doctors that when taking pain meds you want to just keep the pain manageable. The goal is not to eliminate the pain completely. I tend to agree with that Doctors advice as it will prevent overuse and the likelihood of needing an increasing amount of pain meds. But If you are not getting results, and your pain is unmanageable, tell your Doctor. Everyone on this site will tell you that being proactive is a must. You really need to partner with your Doctor and help them help you.
Keep working on getting help at home to minimize the stress that you and your Wife are under. Just do the best you can and get a lot of rest. If you have children it can be difficult but focus on one thing at a time step by step. Try not to worry about things you have no control over. Try to relax and plan ahead.

I have one bit of advice for when you see your Gastroenterologist. You will be checking out the Doctor as well as He or She checking you out. Don’t feel like you are under any pressure, just have a conversation with the Doctor. When you meet with him or her ask if they have knowledge of Mesenteric Panniculitis. Are they a PA or MD. Also ask if they have reviewed your CT personally. Not just the report but actually reviewed the images. Does He or She have your complete history and your family history. This is information you should know and important for the Doctor to obtain a proper diagnosis, prognosis and plan for treatment.

I realize you have the BP to deal with as well. I have not read that MP and elevated BP are related. I know that my BP increases when I have it taken by the Doctor their office. My BP also goes up when I’m under a lot of stress at home (I have a home monitor).

You are in our thoughts and Prayers, wishing you good results with your appointment. keep us posted.
@vdouglas

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