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

HI @snoopdog, hang in there and keep moving forward. I understand the issues with travel while in pain, bloated and other uncomfortable intestinal things going on. You just need to keep taking it a step at a time doing the best you can. Maybe you can try Florida Mayo again, taking it to a higher level. I never accept the first rejection. Sometimes you just need to find the right person. Maybe work at two options Moffitt and Mayo. take the best you can get.

@snoopdog, have you got in to see any other doctors, how are your doing?

@lisas444 Hi,I am in here for first time coming from Australia with a severe case of Scelorsing messenteritis.No help,no one knows what to do,i need help as its killing me,faster than most.
Please can I join your group in hope to connect with like minded and perhaps a way to find help.thanks

Hello @clover,

Welcome to Connect. I’m so sorry that you are going through this, but I want you to know that you’ve found a wonderful community here on Connect, and assure you that you will get much-needed support and answers.

There’s a great group of people here ready to share their experiences: please meet @bertbiz, @mardellepoff, @miker46, @billymac65, @mommasaid, @vdouglas, @doron, @ngilson, @billindc, @billymac65, @doron, @gmeg.

@clover, what symptoms are you dealing with at the moment?

Hi clover. Would love to add you over. We have 326 people now with approximately 15 in Australia. It is private and not open forums for the public to see. I did send you a private message in response to your msg to me.
Lisa Schwart
Tulsa, Oklahoma
You can find me on Facebook

Hi again clover, my daughter was diagnosed with SM back in 2008 when she was 14. Unfortunately her as has been very aggressive as well. She’s been on all the meds that have been tried for SM and even some on a trial basis. She’s had 18 abdominal surgeries for multiple bowel obstructions and the SM calcifications and masses have also affected the right side of her female organs and her right ureter. We live in Oklahoma and have been going back and forth to Cleveland Clinic in Ohio for just over a year now with the bowel transplant team. She’ll be listing for a small bowel transplant. Unfortunately, she developed complications in the last 11 hour abdominal surgery and has been in congestive heart failure. We recently Petitioned the FDA for 2 new drugs which we were able to obtain and she’s been making somewhat of an improvement with them. Once she has cardiac clearance she’ll be having another abd surgery in Cleveland.. she’s been on TPN feeds for several yrs now. We haven’t given up yet. Have many Australians in our group can help network you with hopefully for other doc’s near you. Talk soon. Lisa Schwart, Tulsa, oklahoma.

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.

Please alllow me to join your group. I have MP for approximately 5-6 years. I am maintaining between flare ups on a low maintenance dosage of hydrocodone. I am interested if others have dietary thoughts to share and/or exercises to help. Thank you.

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.

Hello to you as well. I have Sclerosing Messenteritis.I have a lagre tumor,mostly right side,covering the small and the large bowel.
I was opened a year ago to have a biospy,they thought carciniod,it is a big mass,I look 9 months pregnant too..
The surgeon got his nodes to look at,as there were nodes,but I began to bleed out when they tried to reduce the tumor growth.
So they sewed me up and now i suffer so much.I have small obstructions a lot now,i have been eating very little hard food,i just went for a MRI 2 days ago to see what it has done know.
My rheumy seems very unphased,but i cant eat,and the pooing stops too,so my GP and myself decidied if I can find a Gastro Surgeon who is willing to open me up I will take the risk.
If I dont do it i will die home soon.If id doit i might die from complications,but until I am dead I will take a chance to be here a bit longer with mykids ad graandkids.
I really need to find a good surgeon to contact in Sydney,I live in Broken Hill,a small town,but will fly to Sydney to take the chance on this..does anyone know of any Doctors/Surgeons who have been around SM??
Thanks for any help given in advance 🙂