Mesenteric Panniculitis or Sclerosing Mesenteritis

And I will keep my fingers crossed for you as well! Darn lattes!!! I am wondering if stress (rather than diet) contributed to this flare up as I was fine for over two years.

Hi @kimh,

Since you will be seeing your doctor soon, and while we wait for other members to share their insights, I thought you might wish to read this information about Mayo Clinic's approach with regard to MP:
– https://www.mayoclinic.org/diseases-conditions/sclerosing-mesenteritis/care-at-mayo-clinic/mac-20355090

Some of the drugs listed in the above information are tumor necrosis factor (TNF) blockers – they reduce the effects of a substance in the body that can cause inflammation. May I ask if you or your doctors have considered these?

No -well it is for me! I have tried many “diets” and have put together what seems to work for me. (Although it does change-like life itself-whether you want it to or expect it to —or not!) I eat little to no processed foods, or “fake” food , no gmo, no chemicals. (As much as possible) so it’s just home cooking for me or very carefully chosen restaurants. Can’t eat any form of onions or corn. ( no powdered, no starches etc) can’t do nuts generally, no hot spices, no seafood or fish little to no milk. Smaller amounts of meats and cheeses, no hops, malt, alcohol and little salt. Yikes-think that’s close to eat. Coffee gives me problems but I love it so and thus -a downfall! And you, my friend-what works for you?

@kimh I am from Canada as well. I have no Doctor interested. Diagnosed at Uof A hospital but live in a northern community with NO ONE who knows anything about MP or any progressions. So once a bat episode starts I’m in trouble! Back to emerg. Same routine, tests, strange looks, hushed talking -lol! If you you have a good Doctor “into” this pls PM me!

Thank you @poppy73 !! Love my coffee-my downfall! Lol

Welcome to Connect, @jolied; we are so glad you've joined us. @bertbiz has also shared some valuable insight, as always – thank you, bertbiz. I think most of us would do without meds if given the option, but sometimes they are necessary.

Hormone treatments such as tamoxifen slow the growth of scar tissue. Tamoxifen (Soltamox) is typically combined with corticosteroids or other medications and may be used long term.https://www.mayoclinic.org/diseases-conditions/sclerosing-mesenteritis/care-at-mayo-clinic/mac-20355090

Although it's in a another group on Connect, you may also wish to view this discussion about Tamoxifen:
– Tamoxifen use after 5 years https://connect.mayoclinic.org/discussion/tamoxifen-use-after-5-years/

@jolied, may I ask what concerns you most about taking the medication? Have you asked the doctor about any long-term side effects?

Hi, kms. No not on an antinflammatory diet, probably need to think about that and look one up. Are you.?

No I haven't tried an elimination diet, interesting how I have been eating a banana every day for about a year. Wonder if too many bananas can cause problems? The time frame is about the same.

Hello again @kimh , so sorry that it took so long to respond to you. I live on the west coast and work during the day. At work I can sometimes read the comments but it's very difficult to respond so I wait until I get home from work. I am so glad to see the response you received from so many members, moderators and mentors: @kanaazpereira , @pcfromfm , @jolied , @bertbiz , @poppy73 and my apologies for any that I overlooked.

Thank you for sharing your history and concerns with us. As you can see everyone understands what you are going through and are anxious to help in any way that we can. Your story and symptoms are unique to you but sound so familiar to us. Sorry you are dealing with the pain and other discomforts of this illness. I hope it subsides and you begin to feel better soon.

You are right about this being a lonely illness until you interact with a group like this, it's then that you begin to feel understood.

I personally have not heard of any new treatments other than what @kanaazpereira mentioned in her response. I would certainly ask your doctor about that, it sounds very interesting and promising. Prednisone is the conservative approach, if there is one, and should be prescribed based upon the severity of your symptoms and diagnostic evaluations.

I see you have made a lot of contacts and have received a lot of information. Since you are now a member of our community we invite you to continue to come back and respond in the same manner. Please let us know if you need more information and we certainly would like to hear how your appointment goes with your G.I.

I'm also attaching information that was deemed accurate up to this year from some of the leading doctors in the field. I hope it is can provide some information that is helpful to you.
http://www.mayoclinic.org/diseases-conditions/sclerosing-mesenteritis/sclerosing-mesenteritis-care-at-mayo-clinic/ovc-20322161
Best wishes,
Von @vdouglas

@poppy73 , sorry I couldn't respond until after work. I really look forward to seeing your comments on this site. You help to collectively give our community a personality that makes each of us feel comfortable and leaves us with a desire to come back.

Feeling better is much better than bad, I am glad to hear you are feeling better and please don't make me talk bad about insurance companies, I can do it.

I am a little under the weather, colds and flu are going around my work and I have been battling "it" for a week. Got 3 hours sleep last night (boo hoo) but i'm on the mends and hope to get a little sleep tonight. MP is still asymptomatic. I have bouts of nausea and cramps from time to time, so do most people I know. So nice of you to ask.

Wishing you well,
Von @vondouglas