← Return to Mesenteric Panniculitis and Sclerosing Mesenteritis: Let's connect

Discussion
Comment receiving replies
@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

Jump to this post


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

New member with MP over 6 yrs ago..looking for or group to talk about other experiences and/or home treatments.

Welcome @bakb!
Please meet @vdouglas @bertbiz @dennisl27 @snoopdog @doron and others connecting here on Connect. We look forward to getting to know you. Why don't you start by telling us a bit more about yourself and your 6 year journey with MP.

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 <br>meds although I have seen a Messenteric specialist.  I do go through <br>periods of pain that are bad and it is only when I cheat.  I think I am <br>fortunate to have an autoimmune version of this.  I have done two things<br> 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 <br>removed my bloating.  Some people go on FODMAP diet, but the Paleo <br>autoimmune protocol works for me.  I know that many folks don't have an <br>autoimmune version, but I imagine that these supplements and probiotics <br>would help with general health. I used to have Gerd (acid reflux for 11 <br>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.