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

@vdouglas

Just want to make a note that although black stool is a symptom of bleeding, and should not be taken lightly as stated in two posts.
It should be noted, before you panic, that it could also be something simple. Maybe something you have eaten, or if taking Pepto Bismol or Bismuth, that will very likely give you black stool.

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If you are talking to me it was already checked. Black stool is not from food, or medicine taken.

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@vdouglas

Just want to make a note that although black stool is a symptom of bleeding, and should not be taken lightly as stated in two posts.
It should be noted, before you panic, that it could also be something simple. Maybe something you have eaten, or if taking Pepto Bismol or Bismuth, that will very likely give you black stool.

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Hello @danielcamp, Nope the comment was not meant for you specifically, Sorry, it was meant for everyone. I am speaking from experience and made the comment because there are a lot of sore tummy’s out there reading these posts and possibly some taking Pepto Bismol/Bismuth on occasion. I didn’t want them freaking out thinking they had internal bleeding, we have enough problems.

How are you doing? any progress with the doctors?

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@vdouglas

Just want to make a note that although black stool is a symptom of bleeding, and should not be taken lightly as stated in two posts.
It should be noted, before you panic, that it could also be something simple. Maybe something you have eaten, or if taking Pepto Bismol or Bismuth, that will very likely give you black stool.

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Its ok, just making sure cause I did not want to seem rude and not answer your question. As for everything, just the usual tired and my chest is hurting more, out of breathe a lot. But I am seeing a surgeon Wednesday, so here is hoping he does what is needed. I really need to start getting treated for whatever it is.

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@vdouglas

Just want to make a note that although black stool is a symptom of bleeding, and should not be taken lightly as stated in two posts.
It should be noted, before you panic, that it could also be something simple. Maybe something you have eaten, or if taking Pepto Bismol or Bismuth, that will very likely give you black stool.

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I have to ask is it normal to be tired to the point you cant even walk 5 feet without needing to lay down? Or that your abdomen is so hard it is like hitting bone.

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@vdouglas

Just want to make a note that although black stool is a symptom of bleeding, and should not be taken lightly as stated in two posts.
It should be noted, before you panic, that it could also be something simple. Maybe something you have eaten, or if taking Pepto Bismol or Bismuth, that will very likely give you black stool.

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Sorry you have to deal with that. I have had bloating and it does make it difficult to breathe but I never had it quite that bad. Mine would come and go. I had to eat very small amounts of soft food which did help to some degree.
I still deal with fatigue but not that bad. We have had members on this board mention extreme fatigue. One is @dennisl27. He is having surgery on the 15th of this month and mentions his struggles with severe fatigue. You might want to look back through the posts to see his comments.

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@vdouglas

Just want to make a note that although black stool is a symptom of bleeding, and should not be taken lightly as stated in two posts.
It should be noted, before you panic, that it could also be something simple. Maybe something you have eaten, or if taking Pepto Bismol or Bismuth, that will very likely give you black stool.

Jump to this post

I’m glad to hear you are seeing the surgeon Wednesday, please keep us posted, and of course I’ll pray for you.

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@vdouglas

Just want to make a note that although black stool is a symptom of bleeding, and should not be taken lightly as stated in two posts.
It should be noted, before you panic, that it could also be something simple. Maybe something you have eaten, or if taking Pepto Bismol or Bismuth, that will very likely give you black stool.

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@danielcamp, This link has some information that may answer som of your questions. https://rarediseases.org/rare-diseases/mesenteric-panniculitis let me know if it doesn’t work.

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@vdouglas

Just want to make a note that although black stool is a symptom of bleeding, and should not be taken lightly as stated in two posts.
It should be noted, before you panic, that it could also be something simple. Maybe something you have eaten, or if taking Pepto Bismol or Bismuth, that will very likely give you black stool.

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ok now i ve gone to local GI specialist sent by my PCP. nope he sending me to USF in Tampa next city. says there is noone local.  i am calling Mayo but im not sure my insurance will cover all expenses. Mayo i believe takes 5000 down outside of your insurance which is too expensive for me now. i have had no treatment from a specialist all this time more then a year. i am in great pain. and on erythromycin for over 60 days to speed up my intestines. dr said they move too slow i am at risk for a blockage. on a special diet . if a Gi speicalist doesn t care for this who does?

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@danielcamp

I have to ask with having sclerosing mesenteritis, don’t you need a biopsy to confirm that is what you have, not to mention what stage it is in? Also is it normal for people with this to constantly be tired. Most days I can barely do anything and when I do have energy, its to the point that just washing dishes for 10 minutes is enough for me to have to go lay back down. Not to mention I have had swollen lymph nodes in the base of the mesentery as well as in my chest, arm pit and groin. Is all this normal for that disease?

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Hi Daniel, Von is right about the fatigue that I have been dealing with. I think we are going thru this, albeit, at different levels. I, for instance, was exactly in your shoes. Doing dishes for 10 minutes (and taking breaks in between) still took all of the energy out of me. I found that prioritizing my chores helped me a lot. And if I can only get them done then I feel I have accomplished something. Like Von also said I have surgery on the 15th. After they remove the abdominal mass and pathology it we will know more and hopefully they will be able to treat it. I will keep you informed.

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@vdouglas

Just want to make a note that although black stool is a symptom of bleeding, and should not be taken lightly as stated in two posts.
It should be noted, before you panic, that it could also be something simple. Maybe something you have eaten, or if taking Pepto Bismol or Bismuth, that will very likely give you black stool.

Jump to this post

Hi @snoopdog,

Might I suggest you also call Mayo Clinic’s Patient Account Services at 800-660-4582
For further information, also check out this resource about billing and insurance from Mayo Clinic: http://mayocl.in/2hpba1s

This other link, http://mayocl.in/2kk2hF8, provides information on insurance at Mayo Clinic which includes:
• Insurance types
• Approval from insurers
• Guidance for denied claims
• International patients
• Uninsured (self-pay) or underinsured patients
• Insurance FAQs
• Glossary of billing and insurance terms
• Contact numbers and online form

@snoopdog, I’m glad that you are using your voice, and being an advocate for your own health; the Connect community is here to support you.

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@vdouglas

Just want to make a note that although black stool is a symptom of bleeding, and should not be taken lightly as stated in two posts.
It should be noted, before you panic, that it could also be something simple. Maybe something you have eaten, or if taking Pepto Bismol or Bismuth, that will very likely give you black stool.

Jump to this post

Hi @snoopdog, I hope you get some help soon. I know all about the chase to find a qualified doctor, I can sense your frustration. Hang in there, I hope you can get help at the Mayo. Keep us updated.@vdouglas

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Hi @snoopdog, I hope you get the help you need, cause I know how it can be.

Well guys I went to see a surgeon today and. honestly it seems like its the same thing all over again. Went there and he claimed he could not find any reports that said I needed a biopsy or even had this disease. I handed him the reports I had that should that I had it and needed a biopsy and even then he looked and told me that those were from the town over. As such he said they are just trying to frighten you. Should him the head surgeon of his hospital said I needed it and all he did was tell me that he does not see that I do. That if that was the case the head surgeon would have done a biopsy. I get I have a rare disease, if I have it, but this really is getting old as of today it has been four years of me trying to get help, not to mention the first year they were claiming I had cancer. And I am still told by some I have colon cancer but that its find they do not see me needing any kind of treatment.

Tiring, any way I hope everyone else is doing ok.

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@kelloggk

I was diagnosed with interstitial lung fibrosis after cat scan so does anyone know of this disease?? Read it is rare only 200,000 cases a year in U.S. I feel it was caused by my gerd which I have had for years, although I have taken meds for it also have gastritis which I can’t seem to get rid of.

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Hello @kelloggk,

Welcome to Connect. I’m so sorry to hear about your diagnosis, and glad that you’ve come here to seek some answers.
Here’s some information about interstitial lung disease from Mayo Clinic: http://mayocl.in/1RrWfAh; and a Live Chat with patients and experts from Mayo Clinic, archived on the site.”Interstitial Lung Disease and Lung Transplant: What Patients Need to Know” You can watch it here: http://mayocl.in/2eb7DPJ

I’d like to introduce you to @alexander, @jazz, @terries, @nancyligon,@raincrowe, @spicegirl, @pd02, @powderpuf, @inspiration, @muskiemama, @richardlande, @pamelafrye1, @mairi, @oliver22, and others talking about pulmonary fibrosis. You can also view their discussion here: http://mayocl.in/2kPZF5s

@kelloggk, what treatment options have you considered? Do you have any questions about gastritis?

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@danielcamp

Hi @snoopdog, I hope you get the help you need, cause I know how it can be.

Well guys I went to see a surgeon today and. honestly it seems like its the same thing all over again. Went there and he claimed he could not find any reports that said I needed a biopsy or even had this disease. I handed him the reports I had that should that I had it and needed a biopsy and even then he looked and told me that those were from the town over. As such he said they are just trying to frighten you. Should him the head surgeon of his hospital said I needed it and all he did was tell me that he does not see that I do. That if that was the case the head surgeon would have done a biopsy. I get I have a rare disease, if I have it, but this really is getting old as of today it has been four years of me trying to get help, not to mention the first year they were claiming I had cancer. And I am still told by some I have colon cancer but that its find they do not see me needing any kind of treatment.

Tiring, any way I hope everyone else is doing ok.

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Hello @danielcamp, that is why I sound like a broken record recommending the Mayo Clinic. It may be a challenge to get there but you will be examined and diagnosed properly and by qualified doctors. Sorry you didn’t get the help you were hoping for. I spent two years trying to get help before the Mayo. Had the ER Dr wrinkle his face and ask me if I had cancer. I hear the same stories over and over.

What are your plans now?

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@londonmark

Just been diagnosed with Mesenteric Panniculitis by CT with contrast following an acute suspected small bowel obstruction and months of persistent upper right quadrant pain. I have a history of Celiac disease (diagnose by endoscopy 2010) and more recently Chronic Inflammatory Demylinating Polyradicular Neurooathy (by biopsy) both (all three?) of which are autoimmune. I take fentanyl and gabapentin for the constant debilitating pain. Interested in following this thread for others stories and to add my own situation to the record. Based in London I attend the well respected Atkinson Morley Dept at St Georges Hospital, London. (Any other U.K sufferers on here?) Mark

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Hi @londonmark,

We took your question (“Are there any proven links between mesenteric panniculitis and other autoimmune diseases I have, such as celiac disease or small fiber neuropathy?”) to Dr. Joseph Murray, M.D., gastroenterologist at Mayo Clinic. You can view his reply here: http://celiacblog.mayoclinic.org

Do let us know if you have any other questions or concerns.

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