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BillyMac65 (@billymac65)

Mesenteric Panniculitis or Sclerosing Mesenteritis

Digestive Health | Last Active: 2 days ago | Replies (1397)

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@shareie

I am in pain and in the er every 2 months….. moraphine,Nausea rx, prednisone…given at er t hen continue prednisone 5 days…I’m auto immune , still trying to figure out what involves and no one Dr wise can answer any questions…my intestines swell and I hurt base d during attacks which last until I get prednisone etc…..I am tired of routine uncontrollable routine I have every two months….what’s your advice and is this similarity to anyone? Have Been told my condition is very rare

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Replies to "I am in pain and in the er every 2 months..... moraphine,Nausea rx, prednisone...given at er..."

Hello everyone. My initial CT was in follow up to check on tumor on kidney. Initially my local physician referred me to GI doctor. No new news/help/recommendations there. Thus without going to Mayo in MtN r elsewhere my local doctor has been treating me for years. For flare ups I go on a low dose of prednisone with tapering after 5 days to coming off med. For pain which is constant I am on a low doseage of Hydrocodone AM & PM which allows me to function. I have diverticulitis from many surgeries over the years and adhesions that add to the discomfort. I have tried many types of diets to see if that avenue would help in easing pain/discomfort which has not been effective. I wondering if someone has a “home remedy” diet that may seem effective for the person trying it. I am 65 yrs old and retired – and just looking for information. Will follow this and appreciate all input.

Hi Bill,
So sorry you are dealing with this. When I was first diagnosed, I used the FODMAP diet. I still don’t eat raw vegetables, but have been able to incorporate cooked greens back into my diet. Good luck!

Hi @bakb

I was diagnosed back in Oct 2016 with MP. I was able to see a good GI doctor that is treating several MP patients in December. She uses Mobic (meloxicam) instead of the prednisone bc it has fewer long term side effects. After 6 or 7 weeks I began to feel relief from all the swelling and pain. I stick to the FODMAP diet. Like @bertbiz I can’t eat any raw veggies. Certain foods cause me to have an almost immediate “meltdown” where I spend the next few hours in the bathroom. Since I started taking the Mobic and being very strict with my diet, my quality of life has improved. I still have to go work every day, so I try to minimize my risk of having problems during work hours.

The information here is so awesome and helpful. This is a great community to share your symptoms and concerns with.

Hi there,It seems like you are looking for dietary solutions, and I might add that for some they don't work.  For me diet has been my savior. 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.Bullet 2 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

Thanks Doron, and yes I am looking for dietary solutions to my MP. Yes I have auto-immune and diverticulitis. I will certainly look at these suggestions and bring to my local MD. You said you saw a mesenteric specialist – may I ask where he/she was located? I am in SD so Mayo clinic is a possibility. I know Dr. Pardi is at Mayo clinic but to get an appointment takes months. Thus looking for possible solutions to help me now. I thank all for this group as I was very frustrated before. At least now I have suggestions and will work on what works best for me. 🙂 Betty

So my Dr. is in Chicago, but he is on leave for almost a year now.  Once he comes back I will let you know.  I used to diet without the supplements, and still had gerd and felt bloated quite often. Now with diet and supplements I don't feel bloated.  Most of these diets are elimination diets and you can add things back in slowly.  Good luck, Doron

My husband was diagnosed with mp last September and now found a new doctor who said he needed a blood test to show he truly had this disease. The blood test has come back negative. Now when we were in the hospital for same symptoms they told him he doesnt have it or maybe never did or maybe after being on meds it just wont show. They told him he no longer has diverticulitis or diverticulosis. They are trying to tell him they think he has severe ibs but are doing nothing to help.

Please don’t give up your fighting spirit. There is always a reason and always help!! Everyone here is in your corner and fighting this with you !! Please stay in contact with all of us.

Hi Lisa-I’m interested in any group that might be able to offer suggestions-have MP. Diagnosed about 17 years ago. I live very far north, in an area with really no support. So all info welcome!!

Hi pc, I’ll send you a email on here. For some reason though, I don’t have a link to get my emails responses last couple weeks. I’ll send you the j fo to reach me though in the private email. We have 356 members
Lisa

Hi Lisa,
I sent you a private message in response to your query to me regarding this technical issue. Can you send me a message using this form https://connect.mayoclinic.org/contact-a-community-moderator/. We’ll get the issue sorted out for you. 🙂

Hi @pcfromfm, there are several members who participate in both Lisa’s Facebook group and here on Connect. I’d like to introduce you to several other Connect members who live with MP. Please meet @vdouglas @warlick @viva @bakb @missisays7 @doron @billymac65 @croller68 to name a few.

Your having lived with MP for over 17 years, I’m confident that you have a lot to offer. For example @billindc asks “do you have any recommendations as to what diets or treatments have worked for you?”