Connect
← Return to Mesenteric Panniculitis or Sclerosing Mesenteritis
Discussion
Mesenteric Panniculitis or Sclerosing Mesenteritis
Digestive Health | Last Active: Nov 6 8:25am | Replies (1517)Comment receiving replies
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
Replies to "Just been diagnosed with Mesenteric Panniculitis by CT with contrast following an acute suspected small bowel..."
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.
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?
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.
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.
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?
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.
the pcp is sending me to USF but i am trying to get into Moffitt because its good. but Mayo in Jacksonville florida is over capacity and the only one i could go to is in Rockchester minosotta. real far. i am bed ridden mostly lots of abdomenal pain back pain the whole area. low dose steroids right now and erythromycin long term too. but no treatment yet from a GI dr. only apts over a month away/ been to er few times wen i started throwing up alot. im in alot of pain.
@snoopdog. I am so sorry that you are suffering. I am no doctor, but all I can do is share with you what worked for me. I have never taken any steroids or any other meds although I have seen a Messenteric specialist. I do go through periods of pain that are bad and it is only when I cheat. I think I am fortunate to have an autoimmune version of this. I have done two things to place my symptoms in remission:1. I am on the Paleo autoimmune protocol2. I take the following gut supplements as recommended by Kris Kresser (here is the link: http://my.chriskresser.com/the-supplement-guide/). I take the list for digestive disorders and the list for autoimmune.It has changed my life, allowed me to cheat on my diet and basically removed my bloating. Some people go on FODMAP diet, but the Paleo autoimmune protocol works for me. I know that many folks don't have an autoimmune version, but I imagine that these supplements and probiotics would help with general health. I used to have Gerd (acid reflux for 11 years, taking 300mg of zantac daily) and now I don't take a single pill.Best of luck to you!take care,Doron
Connect
Hello @londonmark, welcome to Connect. Thank you for joining us all the way from London and taking a little time to share a bit about yourself. You are off to a good start by finding a long, active discussion about MP.
@londonmark, do you have a specific question for the other members of this discussion, or are you just looking to share your experiences and meet others in similar situations? All of the above are great ways to utilize Connect.