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Mesenteric Panniculitis or Sclerosing Mesenteritis
Digestive Health | Last Active: Dec 4 5:59am | Replies (1518)Comment receiving replies
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!!!!!!
Replies to "First of all, MANY thanks to @vdouglas, for finding my original post in the auto immune..."
@denia, thank you for the insight. Mobic is just hit and miss with me. I hate not being able to take steroids. It's VERY frustrating. I'm so beyond grateful to have found this group. I'm grateful to have people to lean on and help each other through this!
@tarad , The ER doctor looking at my CT images looked puzzled,said that's odd, then asked"do you have cancer"?
Hi @tarad,
I'd like to add my welcome, and thank you for reaching out to Mayo Clinic Connect. We're so glad you've joined us.
Here's some information about Mayo Clinic's approach with regard to mesenteric panniculitis (MP) or sclerosing mesentiritis as it is sometimes referred to:
http://www.mayoclinic.org/diseases-conditions/sclerosing-mesenteritis/sclerosing-mesenteritis-care-at-mayo-clinic/ovc-20322161
You may also wish to view this Mayo Clinic patient story:
Research forges path to effective treatment for sclerosing mesenteries https://sharing.mayoclinic.org/2012/12/13/research-forges-path-to-effective-treatment-for-sclerosing-mesenteritis/
Tara, you are not alone in experiencing the frustration of being "dismissed" by your doctors; if there is one thing I've learned from the wonderful members of Mayo Clinic Connect is that you should never give up until you find the right physician who can help you in the best possible way. If you are interested in getting a second opinion from Mayo Clinic, here is the link to do so: http://mayocl.in/1mtmR63
I sincerely hope @dennisl27 @snoopdog @bertbiz @danielcamp @billymac65 @danrofohio @mardellepoff @billindc @viva @jimmymac @miker46 @sue62 @eddieg @gmeg and others will return to share their insights as well.
@tarad I realize that this must be so stressful, and that you’re doing all that you can; I would encourage you to read through past messages in this group, feel free to tag members, and remember that the Connect community is here, listening.
We’ve got over 400 members now across the world including the leading doc leading worldwide research on the mesentery and its diseases. He was also just awarded Guinness world records for 2018 for his research on and in the mesentery!!! Any one wanting to join the private page pls contact me at Lisa schwart in tulsa Oklahoma on facebook. Or my Info is also on my profile here. Doing tons of networking getting people networked together with treating GIs for MP/SM work all across the USA and approx 15 other countries. Xoxox
Hi Lisa, I was diagnosed with MP 10 years ago, has recently come back. I tried to find your facebook page but was unable to. I have a ton of questions and don't know where to begin. Cindy Connors
I was diagnosed 10 years ago when I had recurrent stomach pain. A CT was done and showed MP. My surgeon did a biopsy. I also was told that I had some sort of non-cancerous tumor. I went for a 6 month recheck and the tumor was gone. For the past two years I have had a lot of upper abdominal pain and nausea. My GI did an endoscopy and said that it was GERD. I went to the ER in May for the pain, they did a CT scan and it again showed MP. I went again two weeks ago. Another CT was done and showed mild MP. I followed up with my GI and he wants to do a colonoscopy and endoscopy to make sure that he isn't missing anything. I was put on 40mg of prednisone with a taper. When that is done he prescribed azathioprine. Before taking such a heavy duty medication I wanted to do more research.
1. If MP can be caused my different cancers, and other things, how are these ruled out?
2. Who do I see about ruling out other underlying conditions.
3. Has anyone else ever heard about taking this medication for MP.
I asked what would happen if I chose no medication. He said that living with inflammation of the MP could actually cause cancer. I feel like I am being forced to choose between the two evils. Possible cancer if I do nothing and possible cancer from taking this immune suppressing medication. I read posts of people choosing to be seen at the Mayo. Does their insurance usually cover out of network?
Sorry for so many questions! I'm finding this a little overwhelming and don't know what the first step should be.
Thanks!
Hi @cconnors,
Thank you so much for sharing your history; absolutely no need to apologize for the questions! This is what the Connect Community is all about: talking with people who have similar experiences, asking questions, and getting support from members who understand what you are going through.
While we wait for other members to join in, here's some information about mesenteric panniculitis care at Mayo Clinic, which might help answer some of your concerns:
https://www.mayoclinic.org/diseases-conditions/sclerosing-mesenteritis/care-at-mayo-clinic/mac-20355090
@danrofohio @kimh have also written about azathioprine and I'm confident they will return to share their insights.
If it gives you any reassurance, I’d like to mention that Mayo Clinic in Minnesota has been recognized as the best Gastroenterology & GI Surgery hospital in the nation for 2017-2018 by U.S. News & World Report.
If you would like to make an appointment at Mayo Clinic, please call one of our appointment offices. You can also request an appointment online. The contact information for Minnesota, Arizona and Florida can be found here: http://www.mayoclinic.org/appointments
With regard to insurance, might I suggest you call Mayo Clinic's Patient Account Services at 800-660-4582
For further information, also check out this resource about Mayo Clinic billing and insurance: https://www.mayoclinic.org/patient-visitor-guide/billing-insurance
Hi again @cconnors,
I forgot to mention the Gastroenterology & GI Surgery Page on Connect (https://connect.mayoclinic.org/page/gastroenterology-and-gi-surgery/) which has a great video/discussion, by Mayo Clinic gastroenterologist, Dr. Kisiel:
https://connect.mayoclinic.org/newsfeed-post/the-risk-of-cancer-from-certain-ibd-medications-1/
Dr. Kisiel talks about the pros and cons of drugs like azathioprine, and the benefits and risks of taking such immunosuppressants. I hope this helps alleviate some of your concerns.
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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.