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

@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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@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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Thanks sadly I have gone to the er several times for pain because of it. They consider it gas, heart burn or something else. I know my blood pressure is not 174/114 because of it and I may have no choice as I was supposed to see a surgeon about it next week only for the head surgeon that I saw last year changed my appointment to where I have to see him now. Either way thank you, I am already preparing to see about the Mayo clinic if this does not work.

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Hello @danielcamp,

I see that @vdouglas has shared some great insight with you; I also wanted to welcome you to Connect, and let you know how glad we are to that you’ve come to our community for support.

I hope @billymac65 @danrofohio @bhamilton @mardellepoff @billindc @bertbiz @viva @vmc123 @jimmymac @miker46 @mommasaid @sue62 @doron @eddieg @tlw32 @peterhamilton @gmeg will also jump in to give you more information.

Might I also suggest that you call Mayo Clinic? If you call the number on this Request an Appointment webpage, http://mayocl.in/2bkIbZy they will ask questions to help direct you to the best specialist. If you would like to make an appointment at Mayo Clinic you can call or request an appointment online here: http://mayocl.in/1mtmR63

I realize that this must be so stressful, and that you’re doing all that you can; I would encourage you to read through past messages in this group, feel free to tag members, and remember that we are here to help.

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I will highly recommend Mayo Clinic since they are research oriented and know how to properly diagnose the problem. In my discovery proper foods is the best healer but too many years of not knowing how to eat properly plus stress puts us in a special health situation. Please learn diet and eating proper foods for your future healing. Black stool to me usually comes from internal bleeding but not always. You should be in an emergency situation since pain can mean infection also. Since a year and a half ago by changing my diet healed many diseases including diabetes and Crohn’s. My acid stomach and reflux stopped after 50 years that was worth eating right. Good luck to you.

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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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Hi, i dont know anything about your disease. But i think you should call your dr or e.r. about your black stools asap. I have heard thats not a good sign.

REPLY
@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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Glad to hear you are ready to see the Clinic. @kanaazpereia gave information on how to contact the Mayo Clinic. They are very nice and easy to deal with. Not at all like a normal clinic that has no time or patience. I highly recommend you call. Let us know how you are doing from time to time. It is normal to feel overwhelmed because you have an illness you want to ignore but can’t, you are in pain and can’t make it stop. You are hearing scary information. Just take one step forward at a time

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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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HelloThank you for the great advice! I am currently still on short term disability. I actually had surgery this week. I had a heart catherization since my calcium score came back very high. They did not find any blockages or anything that would prevent me from having this abdominal mass removed on the 15th (2weeks). With lots of prayers and friends like you to keep me going I am going to be OK. I will keep you updated. Dennis

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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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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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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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