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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..."
Thank you for sharing every little thing helps
Why did they do a biopsy and what is that for in kind of new at this and I got MP to and it bad.
I had to have surgical biopsy because they wanted to verify that it was MP and rule out cancer. I had been hospitalized for about a week and my inflammations had increased in size from one CT scan to the other. Waiting for the results was a little difficult, but at least we knew that we could rule out cancer. After a few more months, I was sent to the local cancer centre to check for lymphoma markers. I never heard back (which in Canada....no news is good news!).
Hello Cindy @cconnors, I would like to add my welcome to the Mayo Clinic Connect. As Colleen posted many of the members, like you, have been living with this disease for quite some time. We understand what you are going through.
I read your post offering us a little bit of your history and I thank you also. Each of us has a similar story to tell so I can relate to your frustration and anxiety as well as the pain that you must be going through.
You have made a good choice to step back and advocate for yourself. It's time to take a deep breath and look at things realistically. I was in pretty much the same position, although I never had the biopsy. In my case, I could see the doctors were not sure what they were dealing with. I knew that I had to find a doctor or facility that understood the disease otherwise they were going to be doing test after test. I'm not suggesting you stop seeing your current doctor but if you are uncertain, the following is what I did.
My research led me to the Mayo Clinic and I made the appointment online. I believe Kanaaz posted a link to the site but just in case you can't bring it up you can go to the upper right corner of this page and click on "Request Appointment". I chose the Mayo Clinic in Rochester because Dr. Darrell Pardi is part of the gastroenterology group at that location. I flew from Las Vegas, Nevada to the Clinic to get the best diagnosis available to me. I can tell you that when your CT scan is viewed at the Mayo Clinic, there is very little guess work. The most important part of diagnosing MP, in my opinion, is having a doctor familiar with mesenteric panniculitis viewing the CT scans then making a diagnosis and prognosis based upon experience rather than guess work.
I know how hard these decisions can be but you should only have to make this decision once.
You have my best wishes and support whatever decision you choose to make.
@vdouglas
Von
Hi Von, thank you for your response. I have decided to be proactive an make an appointment at the Mayo. I was wondering....when you went, were you there for more than the day? What did your bring with you for your appointment? Did they do further testing and if so, how long did it take to go over the results with you? Did they give you a course of treatment? I would have to fly in from Rhode Island and didn't know how long to plan my stay for.
Thanks,
Cindy Connors
Hi @cconnors,
Your question about appointment scheduling/travel is one that many of our members can identify with. We have some fantastic discussions in the Visiting Mayo Clinic group on Connect which you may wish to view: https://connect.mayoclinic.org/group/traveling-to-mayo-clinic-minnesota/
Another good source of information is Mayo Clinic’s Concierge Service. It is a free service provided by Mayo Clinic for patients.
You can contact @clockrem12, at Concierge Services. They are open Monday-Friday, 8 a.m.-6 p.m. and can be reached by phone and email at 507-538-8438 or concierge@mayo.edu
We wish you all success.
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Hello, my name is Kim and I was diagnosed with MP in 2014 after having numerous CT scans and a surgical biopsy. I was prescribed 40 mg. of Prednisone for about 3 months and then tapering down for another 3 months at 5 mg. increments. By November of that year, I began experiencing severe esophageal spasms (which mimicked symptoms of a heart attack). and was diagnosed with GERD as well. I was put on medication for that, but once I was off of the Prednisone for some time, the symptoms disappeared.
Since this August, I have been experiencing a relapse of MP and was put on a less aggressive Prednisone therapy (40 mg. for 3 days, 35 mg. for 3 days and so on until I was done) in the hopes that we had caught it early. I felt better for a few weeks, but then the MP seemed to come back with a vengeance. This time, I was put on the same steroid routine as in August, but am staying on 10mg. daily until at least February. All doctors have agreed that aggressive Prednisone therapy (such as 2014) could cause do more harm than good. So unfortunately the esophageal spasms have returned and I am back on the GERD meds again! My GI was considering putting me on azathioprine alongside the low dose of Prednisone, but over the past three weeks, I have begun showing some improvement with my symptoms. My GI is hesitant to put me on another medication that may bring on another slew of side effects.
Though I am still on pain medication (slow release tablets), I have been able to do so many more things (at least in the early part of the morning and again in the early evening). I feel like I am gradually getting my life back and am hoping to get back to work (at least part time) at some point in February. To answer one of your questions, I felt it would have been impossible for me to not treat my MP. I had no life. And you should know that I absolutely hate being on Prednisone. The esophageal spasms, osteopenia, facial hair growth and weight gain (I am vainer than I should be!) always upset me, but at this point I have reconciled my feelings. After all, if I had cancer, I would not refuse chemo because I didn't like the side effects that it would cause. These are tough choices for sure and I can only share my humble opinion.
If you do decide to try the azathioprine, could you keep us updated? I think many of us reach out to one another for advice, knowledge and suggestions. I am from Canada (so I don't know about insurance coverage for medications, to answer your other question), but am always curious to find out what my "American cousins" are trying for treatments! This group has been very helpful to me, even if it is just to share my feelings and symptoms with others who 'get it'. Sorry for the novel....I think others on this site are used to me by now! lol