Mesenteric Panniculitis or Sclerosing Mesenteritis

Hope you feel better!! Keep us posted please.

Hello @tarad, Glad you found the Mayo Clinic Connect and welcome!, I have to say "YES" there are actually many who have dealt with all of those questions. It is very scary and frustrating to be told you have a disease no one seems to know anything about. There is hope with this disease despite all of the scary things that you read. It is almost like reading the side effect label of a drug, it will scare you into not taking it.
I have Mesenteric Panniculitis without symptoms at this time. I am not a doctor and I do not wish to give medical advice but comment based on my own experience with this disease.

Here is a link that should take you directly to the Mesenteric Panniculitis forum. I haven't tested it but if it doesn't work I will correct it.
https://connect.mayoclinic.org/discussion/mesenteric-panniculitis-or-schlerosing-mesentertis-auto-immune-around-small-intestine/?pg=36#comment-74305
I can give you some information that will be helpful and in the meantime you can read over some of the comments. The Mayo Clinic has a Gastroenterology department that has a team that is familiar with this disease. I can send those links later not to overwhelm you with a bunch of information. Here is a link that explains the disease, https://rarediseases.org/rare-diseases/mesenteric-panniculitis/
I use that link because my doctor, Dr. Darrell Pardi, at the Mayo Clinic referred to it during our consultation so it is regarded as factually sound.

@tarad I hope you find this information useful. We welcome you to come to the MP (mesenteric Panniculitis) forum and participate.
Best wishes to you for good health,
@vdouglas

@vdouglas - thank you for getting back in touch with me!! I'll definitely be checking out the forum you mentioned above. I've read (extensively) everything on the NORD. That's what I've tried sticking to primarily - that information and that found here from Mayo. I wish Mayo was closer to me - I would feel SOOOOO much better to be able to treat with physicians that knew what they were dealing with.

Thank you, again, for getting back to me. I may contact you again if I have difficulty with the link to the forum or have any additional questions as I begin this journey.

First of all, MANY thanks to @vdouglas, for finding my original post in the auto immune forum here on TMC connect site. I'm so relieved (as morbid as that is to say) to see that I really am NOT alone.... I'll preface by saying there is a very real possibility I may rely heavily on everyone's experiences through this in this forum.

I feel like I’m slowly going crazy… I had a hysterectomy May 9, 2017. By August, I was diagnosed with mesenteric panniculitis that was “accidentally discovered” when I continued having abdominal pain after surgery (my gyno naturally thought it was my ovaries; CT scans done and radiologist found the MP). I was sent to a surgical oncologist that was said to be a “GI guru” and have extensive knowledge in all things “weird and rare”. He was rather dismissive about it all as, based on my lab work my gyno had done, there was nothing that made him think there was a concern for cancer. Just brushed it off as an “annoyance issue”, that the pain could stay for a month or a year, but he would give me Mobic to help with the inflammation and it should eventually resolve itself (standard treatment for MP is through steroids, but I have anaphylactic reactions to all steroids, and I’m kinda trying to NOT die….). I’m a month in on the Mobic, the flare ups in pain are more frequent with the pain being more and more intense. Nausea has also started to set up and my appetite is waning, at best, as most of the time, the thought of food makes me sick. My PCP and gyno weren’t pleased with the consult I had from oncol. One has ordered a repeat CT to be done in a couple of months to monitor progression/improvement. The other has referred me to gastro and hematology. I had a positive ANA and a positive double strand DNA. My spleen has been consistently mildly enlarged on the past few CT’s I’ve had done. Research material on this is limited. I feel like I’m in a snowglobe, being shaken up with all these doctors, throwing around words like “necrosis” and “restricted blood flow” and “cancer” and referral after referral. I’m frustrated and tired of “hurry up and wait”….

What's your insight on what I'm looking at long term?? I've never had anything chronically, so I'm lost on what to expect. My PCP is very literally clueless. The "GI guru" has, in effect, blown me off - I called seeking helping when the Mobic failed to work. All I've gotten was a text message from the pharmacy saying my Rx was ready (apparently, he just called in something new without talking with me about what I had going on). Today, I got a call from his office saying they were going to refer me to a gastro but saw that I was already scheduled and wished me best of luck. Still have not spoken to him. Glad my intestinal tract hasn't shriveled up and fallen out waiting for him to get back with me (sarcasm).

Hit me with whatever info you've got. Books. Articles. Suggestions on diet modifications. Meds you've tried that were successful. Anyone tried anything holistically? I am desperately wanting to "get in front of the ball" as best I can - the bad days are BAD. I have two kids to raise, one 16 and one 6. Mommy doesn't have time for debilitating.....

Bless every one of you all!!!!!!! Sending everyone lots of hugs and support from Kentucky!!!!!!

Douglas, Thank you for all your answers and offer to help guide me. Today has been a little better for me, I also appreciate your prayers. I tried Hydrocodone but didn't like the side effects, my son and his wife are nurses and say to stay away from it long term if possible. I currently take Tramadol as needed for pain it doesn't work as well as Hydrocodone but makes it manageable without some many side effects. Have a great weekend!

@carbxbe8206 - I agree. I am using Tramadol 50mg as needed for pain. My doctor has given approval to take it with Tylenol for a little better results.

Hi @carbxbe8206 – Do you know why they say to stay away from Hydrocodone long term? I've been taking Symax Duotab (extended release hydrocodone) nightly for about two years now. It is the only thing that allows me to sleep well through the night. My doctors have so far said that if it is working for me, then I should continue taking it. The only side effect I experience is blurry vision, which is an annoyance, but nothing serious.

David, Not sure we are talking about the same thing, I have never heard of Symax Duotab hydrocodone,I have heard of Symax Duotab Hyoscyamine. Hydrocodone is an opioid pain killer, Hyoscyamine is to treat GI issues? My son has said the same, he also said they do make an extended release hydrocodone but it is called Hysingla ER. Anyway my son said hydrocodone is addictive, long term use could cause organ damage, along with withdrawal symptoms, and don't use with breathing problems. Also causes Hard stools (constipation). Your doctors know best, it just wasn't for me. Glad you found something that works for you.

My doctor put me on Mobic last year (meloxicam). It took about 6 weeks before it gave me some relief. I can now take it every other day most of the time. It has really been a tremendous help to keep the inflammation down. I make sure I take it with a meal because I bleed easily from by stomach. It also helps with the pain. I still get swollen and uncomfortable during a flare, but it helps bring things back down in a reasonable amount of time. This is such a frustrating disease! This is a great group of people that completely understand what you're going through! Managing my diet and taking my meloxicam regularly has really helped improve my quality of life.

Denia, Good to know, want to check with GI doctor about this drug because I can't steroids. Do you have GERD, acid reflex issues, was wondering if this med with make these issues worse? Thanks for the information.