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tarad
@tarad

Posts: 4
Joined: Sep 26, 2017

Mesenteric Panniculitis - I can't be the only one...

Posted by @tarad, Sep 26, 2017

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”…. is there ANYONE that’s ever dealt with this that can give me a little insight on it all???

REPLY

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.

A radiologist diagnosed me with MP in 2016 after a CT scan. 6 months later I had another CT scan and it was still the same diagnosis. For fear of having a million dollar work up and still no solutions I tried a different approach. I stopped seeing my GI doc and returned to my primary doctor with the idea that my symptoms seem to return with extreme prejudice when I’m stressed or suffering from anxiety. I asked my doctor about trying medication to control my anxiety or stress and I was prescribed a very small dose of generic Prozac. 10mg Just strong enough to take the edge off. It took a few weeks for the drug to work but eventually my MP symptoms which I refer to as “stomach spells” went away. I realize this might not be the answer for everyone. I can only tell you that I found relief from it. I ran out of Prozac last week and my stomach spells returned with a vengeance this evening right before I was to turn in for the night.
So I decided to post my results of the past 6 months online. I plan to return to my primary doc and continue with this approach. My hope is that I don’t develop a tolerance and eventually have to increase my Prozac dosage but coming from a background in Pharmaceuticals my guess is this will probably be the case eventually. Also I started drinking sparkling water for relief. Belching seems to keep my inflammation down and I grew tired, unhealthy and fat drinking sodas. Zero calorie, zero sweetener sparkling water. Exercising works also if you’re not too bloated or inflamed to actually work out. Make the time to exercise your brain and body will thank you. When all else fails I reach for my tum tum tum tums just like tonight. Find something to read online because it’s going to be a long night.

The deal is we have this issue that is rare and hasn’t been solved yet.
All we can do is treat or try and prevent the symptoms from returning until a cure is found.
I can only assume that my MP is A typical because my GI doc performed a scope and colonoscopy and found no evidence of Cancer, Lupus or anything else that could be underlying but only time will tell.
Wishing you all the best of luck learning to live with this. Should anyone have any other ways of treating their symptoms please share. Maybe your way will work for others including myself.

your not alone, but I don't have any info either

hey, Im 24 years old and been suffering with MP for about 5 years now, Getting diagnosed was such a relief because finally I had an answer. I went from hospital to hospital till I found a Dr that took my pain serious enough and was able to see from the CT scan what others had missed. I had a biopsy done and thats how I was diagnosed as A typical. I was treated w all kinds of different meds because they had never had an A typical patient before. I was put on Prednisone finally after 2 years on steroids, it worked I was able to eat and the constant nausea lessened. My family is always worried which makes it difficult because since stress is such a trigger worrying about them being worried causes episodes all the time. My pain comes about very often after I eat or waking up. Cannabis has helped a little but not as much as I wish. In NYC there arent any Drs I have found who have been of help and my old G.I has left and due to state of health insurance the hospital that was treating me is no longer able to treat me. If any one knows of any good G.I Drs in NY do let me know?. I know that the Mayo clinic is far and Im not sure if anyone is from NY but this is the only place Ive found w ppl who have MP and also whos stories I can relate to and can understand what its like having something rare and trying to figure out what works and since its something that people do not have knowledge of they just dont think much of the struggle. Drs and family thought I was making it up people thought I was starving my self for attention, and due to the drug epidemic some hospitals didnt even give me a second look they would give me zantac an IV and ignore me since nothing was visibly wrong. I was starving for months in pain unable to sleep , hiding from my family at 20 bc I didnt want people to see me struggling so much and it messed w so many aspects of my life just bc the Drs were unable to diagnose me. They even once tried to lock me up and convince my parents I was a danger to myself .Ridiculous right?
I still struggle w pain every now and then and for any women is it just me or does that time of the month get more painful since dealing with MP? well idk why Im really writing all this but its just nice to get it out there to people who may read it and if they do just knowing someone will understand. and if anyone has any answers to the 2 questions I asked in this essay I would greatly appreciate it. Hope everyone is feeling good. -AC

Hello @cartagena13, welcome to Mayo Clinic Connect. I'm sorry you are having to deal with so much at such a young age. I'm tagging our moderator @kanaazpereira to see if we should move your post to the following discussion for more visibility. It is a larger and more active group where you can meet others and learn what they are doing for treatment. In the meantime, you might want to read through the discussion and post any questions you might have. Also, I would recommend clicking the option at the top of the discussion to view Newest to Oldest posts. That way you will see the latest posts first.

Groups > Digestive Health > Mesenteric Panniculitis or Sclerosing Mesenteritis
https://connect.mayoclinic.org/discussion/mesenteric-panniculitis-or-schlerosing-mesentertis-auto-immune-around-small-intestine/

Have you changed your diet any to see if it helps trying to eliminate certain foods that might trigger a flare up?

John

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