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 group.

@mary987

Hello Justin

Thank you for your comments.
The pains are going on and worsening since 2012. The diagnosis has always been irritable bowl syndrome. But reading the reports of the docs it cannot be that proeminent lymph nodules and 24/7 pains and p-anka 3 time the norm are the result of a irritable bowl syndrome..not to mention that a CT a couple of years ago mentioned the PM. So after struggling for years we found a Dr. that seems to listen. In these years we have tried FOODMAP, putting away dairies, gluten, fructose, histamine.. nothing seems to help. The belly blows up from time to time so much that it hurts only looking at it. And he cannot breath properly without having pain or sitting straight without having pain. But there are no gastro symptoms (gastro and colonoscopy were ok). It s like fighting against a draught of air since years. The last CT reconfirmed the PM again and the proeminent lymph nodules again. So now we should call the doc after 10 days of prednisone but for what we know ‘normal’ PM cases respond from the first day on? If the prednisone doesn’t work, what is next?

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Hello Mary, this is @vdouglas. I’m sorry to hear about the issues your husband, and you as well, have had to deal with. Sounds like this has been going on for some time. I do not know what your husbands Actual diagnosis is and can only speak based on my personal experience with MP. Mesenteric Panniculitis is an inflammation of the Mesentery “Organ” and surrounding tissue. All of the symptoms you have mentioned in both threads sound typical based on my experience. I had flank pain when standing and had to sit, then if I sat too long I would have to stand. Relied on pain Meds to help but it seems like you just have to find the one position that feels the best. Bloating is very uncomfortable and painful as well. I only had about 4 weeks or so of non stop pain, two very bad weeks. Pain Meds only slightly helped. Never had a doctor try Anti-inflammatory meds. It was two years before I saw a qualified Doctor. My symptoms subsided prior to my Mayo Clinic visit with Dr. Darrell Pardi.

Your husband has had two CT scans that mention Mesenteric Panniculitis. It is important to get copy’s of those scans. Get the Disc of the scans from the radiologist not just the report. These discs can show historical changes in the Mesentery and Lymph system and much more. I would recommend a visit to see Dr.Pardi at the Mayo Clinic in Rochester Mn if at all possible. Prior to acceptance for a visit they will probably want to see your husbands CT Discs. Dr. Pardi is very experienced and can prescribe a course of treatment based on your husbands history. There is no cure I am sorry to say and as you probably already know. The treatments can work but may not. The type of treatment is based on symptoms and history and the progression or regression of the inflammation, even family history. Another constant is that this whole thing can be so overwhelming. Neither of you give up hope!
Best wishes and speedy recovery for your husband,
@vdouglas

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@mary987

Hello Justin

Thank you for your comments.
The pains are going on and worsening since 2012. The diagnosis has always been irritable bowl syndrome. But reading the reports of the docs it cannot be that proeminent lymph nodules and 24/7 pains and p-anka 3 time the norm are the result of a irritable bowl syndrome..not to mention that a CT a couple of years ago mentioned the PM. So after struggling for years we found a Dr. that seems to listen. In these years we have tried FOODMAP, putting away dairies, gluten, fructose, histamine.. nothing seems to help. The belly blows up from time to time so much that it hurts only looking at it. And he cannot breath properly without having pain or sitting straight without having pain. But there are no gastro symptoms (gastro and colonoscopy were ok). It s like fighting against a draught of air since years. The last CT reconfirmed the PM again and the proeminent lymph nodules again. So now we should call the doc after 10 days of prednisone but for what we know ‘normal’ PM cases respond from the first day on? If the prednisone doesn’t work, what is next?

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I would add that Presnisone is a common course of action for inflammation. It may take time for the pain to subside. I do not know how long Prednisone is typically used before stopping it. If your husband tolerates it well the inflammation “could” subside…

Maybe other members can offer their experiences.

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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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Thank you John. I would also be interested to know if there are proven links between MP and the other autoimmune diseases I have (such as celiac disease or small fibre neuropathy)? as my gastroenterologist is going to push my neurologist to have me genetically tested for these links.

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@dennisl27

I thought many of you would find the attached article interesting.
http://www.cnn.com/2017/01/04/health/new-organ-mesentery/

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Hi @dennisl27, you and your wife have a lot going on right now. I understand taking it one day at a time. I just want to let you know that we also have a Caregiver’s group on Connect: https://connect.mayoclinic.org/group/caregivers/ where you can connect with other people caring for a partner should you wish to.

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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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Hello @londonmark,

In doing some research, i found this paper, titled “Intestinal lymphoma and mesenteric panniculitis: complications of undiagnosed celiac disease” You can read the abstract here:
http://bit.ly/2ixILbH
And, I would encourage you to look at the Mayo Clinic Celiac Disease blog, to get some more information about the possible complications of celiac disease: http://celiacblog.mayoclinic.org

I don’t mean to inundate you with so many links and websites, but we have some great discussions on Connect that might interest you as well:
Multiple family members with autoimmune diseases….is there a link? http://mayocl.in/2ixHHVc
More than one auto immune disease?
http://mayocl.in/2iKsU7O
@londonmark, do you have family members who have or have had any autoimmune disease?

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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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my mesentary panniculitis is spotted all thru out my stomach so what is the difference cause my doctor has it wrong to say it is sclerosing. whats the difference and as far as the treatment? i am going to moffitt tomorrow. they say all three doctors that my doctor at the lakeland cancer center has overdosed me on steroids and i now have cushings. and he did not give me tamoxifen with it. so know i am reduced on my own predisone and pcp wants me to start tamoxifen. moffitt will tell me tomorrow. i am in huge pain. 

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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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Hello @snoopdog,

I am so sorry to learn that you are going through all this! Please hang in there; I’m sure someone from the Connect community will join in with more support for you. In the meantime, here is what I found in my research:

Mesenteric panniculits, is also known as sclerosing mesenteritis, It can include fat degeneration (necrosis), chronic inflammation, and scarring (fibrosis) of fatty tissue within the mesentery.
It is known as Sclerosing mesenteritis when there is fibrosis or scarring; when there is inflammation, it is known as mesenteric panniculitis.
Here is some more information from Mayo Clinic, http://mayocl.in/2iYBhyt, and a great story about the results of ongoing research at the Clinic http://mayocl.in/2i5EIlB

@snoopdog, in one of your earlier posts you said that your insurance will not cover treatment at Mayo Clinic; have you looked at this link about Mayo Clinic’s Billing and Insurance: http://mayocl.in/2kbJyfl ?
It also includes information about Charitable Care and Financial Assistance at Mayo Clinic: http://mayocl.in/2klOv8y
@snoopdog, Mayo Clinic in Rochester, Minn., ranks No. 1 for digestive disorders in the U.S. News & World Report; I know you are in terrible pain, but I also see your strength in this struggle. Please let us know what you find out at Moffitt.

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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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i am finally going to a Gi specialist monday. been in the hospital several times with the stomach pain and vomitting. i am on nausa medication and erythromycin over 30 days now going into 60. pcp wanted to put me on tamoxiphen but i am glad i did not cause i was in severe pain without it and vommitting alot real sick for a week now. my stomach feels like it is solid plastic hurts all the way around for some time. all the CT says is mesenteric panniculitis . spotted the dr said. all over. the first time 08 was three masses removed no cancer. no treatment after then this last year but i do believe it is also the back pain too. all the way around. what types of surgeries do they do? to remove the necrosing? or can the chemo be avoided due to vomitting?

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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 Dennis, sorry you guys are going through what youre going through. I was diagnosed in 2010 and had to quit work in 2012. My tumor is about the size of a fist and shares blood vessels with my small intestines therfore inoperable. I hadnt seen your age but would suggest filing for social security disability if you have the work history. Even if you get better at least youve started the process. It takes about 3 years to get a hearing and get a decision if youre not approved right away. My judge apologized that it took so long and the reason being is what i had was very rare.

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Hello,
I was diagnosed last year with Schlerosing Mesenteritis as they see scarring on the CT scan. However I have yet to had a biopsy for it nor have I been treated. I was 39 when this started and now I am 42. In that time I have gone two four different cities and seen several doctors and surgeons, all of which have claimed I have this rare illness but no one will seem to take the steps needed to help. As of last year I went from a size 36 to a size 60 in my waist, that now is as hard as hitting bone I am sleeping most of the day and still tired, I have a low grade fever that I can not get rid of and now as of last week I have jet black poop. I have been trying to get the healthcare I need for sometime and wanted to know is there anything else I can do. Any advice would be helpful.

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@danielcamp

Hello,
I was diagnosed last year with Schlerosing Mesenteritis as they see scarring on the CT scan. However I have yet to had a biopsy for it nor have I been treated. I was 39 when this started and now I am 42. In that time I have gone two four different cities and seen several doctors and surgeons, all of which have claimed I have this rare illness but no one will seem to take the steps needed to help. As of last year I went from a size 36 to a size 60 in my waist, that now is as hard as hitting bone I am sleeping most of the day and still tired, I have a low grade fever that I can not get rid of and now as of last week I have jet black poop. I have been trying to get the healthcare I need for sometime and wanted to know is there anything else I can do. Any advice would be helpful.

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Hello @danielcamp, the story you tell is reminiscent of my experience and that of so many others . I’m sorry you have this and have to deal with those nasty symptoms. You are going to be ok, please have faith and a positive attitude if you can muster that up. My first advice is to go to a doctor or ER regarding those symptoms that you mentioned very soon and make sure nothing else is going on. Then my advice to you is a trip to the Rochester Mayo Clinic if at all possible. It is rare to find the proper diagnosis and treatment anywhere else. Dr. Darrell S. Pardi at the Clinic is the Doctor you need to see. This is a very big step to take but if you want to find some answers this is where you need to go. This is my opinion based on my experience. You have gone a long time with this and you really need to be seen by those who have researched this illness and know what they are dealing with. I never thought I would make it there because of all the obstacles. I put my mind to it with the help and advice from some good people on this site I made it. I am so glad I went. I have piece of mind. I look back and the time went very quickly and the cost for everything is the best invest I’ve ever made.
You may have already been seen regarding the symptoms you mentioned but if you haven’t please go and get it checked. If you have good insurance an ER can do most of the test quickly without taking weeks and running all over the place.
Good luck to you and best wishes for your good health.
@vdouglas

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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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Hello @snoopdog, how are you doing. Have you seen the GI specialist yet?
@vdouglas

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