Chronic pancreatitis, mesenteric panniculitis... and more?

Hi @sallycinnamon and welcome to Mayo Clinic Connect. Thank you for sharing your story. It sounds like you have been going through a very rough time for the last 20 years. I can personally sympathize with you as I went a very long time without a diagnosis for abdominal pain as well. It can be very overwhelming to wake up and not have answers and be in such discomfort.

I'd like to invite @gaylea1, @2011panc, @patowen1 @ashley112689, @mkirby19 @marvinjsturing, @shayshay, @ab1989, @carcar @mel1987 @cat4cards @giango87and @kimh to the conversation to discuss problems with the pancreas, mesenteric panniculitis, redundant colon and gall bladder issues.

Sally, do you or your physician believe that your symptoms are not caused by the mesenteric panniculitis, which include abdominal pain, nausea/vomiting, bloating, early satiety, loss of appetite and diarrhea and constipation?

Hello Amanda! Thank you so much for replying! The power of the internet!

The original doctor who diagnosed me with the MP was the doctor on duty at the hospital that I was admitted to. My GI, and my other doctors seem to think that the MP was not such a severe case that it would keep on like this, and respond with the severe symptoms. But, they all admit that MP is so rare that they don't really know for sure. I feel like I have had to be my own advocate and detective in one. It's incredibly frustrating!

The doctors have no idea why I have the panniculitis. My father has pancreatitis, and has battled ulcers his entire life. So between that and my mother's issues (I wrote of above) there are a lot of genetics that are not on my side! I really want to know my "real" diagnosis, and what I can do to help.

Thank you in advance to everyone!

@sallycinnamon Hello and welcome. I had to look up mesenteric panniculitis and redundant colon. Mesenteric panniculitis sounds like my "gut" issues, although I have never been given that diagnoses. I don't know that anything in my treatment would change. I have not (thankfully) had the vomiting that you are experiencing. What is working best for me is to eat small amounts frequently, making sure to eat foods with good nutritional value, and drink lots of water. I have a minimum of 80 fluid ounces a day, including up to 8 ounces of coffee a day. I occasionally have a soda or alcoholic drink, but mostly water. I hope you find relief soon, You certainly are going through a difficult time.

Thank you @2011panc! It helps to know that there is a community that cares. I definitely have to up my water intake. I drink A LOT of Dunkin Donuts iced coffee, and Polar Seltzer like a good New England girl! But plain old water goes by the wayside. I am really going to make an effort to do so. Thanks!

Hi @sallycinnamon, you may also be interested in these related discussions on Connect:
- Pancreatitis? https://connect.mayoclinic.org/discussion/pancreatitus-1/
- Mesenteric Panniculitis or Sclerosing Mesenteritis https://connect.mayoclinic.org/discussion/mesenteric-panniculitis-or-schlerosing-mesentertis-auto-immune-around-small-intestine/
- Redundant / Tortuous Colon https://connect.mayoclinic.org/discussion/redundant-tortured-colon/

I whole-heartedly agree with @2011panc. Water really is best. Do you eat small amounts throughout the day rather than full meals?

I was diagnosed with MP in May 2020. Please add me to your conversation. MMR33

My father died at age 63 of a lyo myo sarcoma of the small intestine. Also extremely rare. I developed MP this past Spring (2020) and have been working with my Mayo physician to find the right combination of meds to treat it. I will be 58-yrs-old on October 12.

Sally, because it is so rare, doctors are reluctant to diagnosis it. It took 5 CT scans in 5 months to get my diagnosis and only after they ruled out every other possible cause. I had endoscopy and colonoscopy, every conceivable blood and stool test, etc.

My recommendation is to keep pushing for answers. I got a lot of "Let's wait and see if it goes away on it's own" during my journey to a diagnosis. I refused to take that as an answer. I was miserable.
I saw 2 primary care, 3 Gastroents, and an infectious disease doc all during the Covid outbreak and over a 5 month period of time.

Hello! That's the spot I find myself in. No one wants to take the MP and run with it. I want to find out why it happened, and what I can do about it. Because in my opinion it's causing other issues.

Do you handle it with diet, or something more?

Hello everyone...I'm back...actually never left the MP page! Welcome to @sallycinnamon. I was diagnosed 6 1/2 years ago with MP. After three CTs, numerous ER visits and a surgical biopsy, I received the 'official' diagnosis and was put on Prednisone (40 mg) for three months and then began a slow taper for another 2 or 3 months. I ended up in remission for two years and honestly was beginning to forget that I even had the disease. And then it reared its ugly head again by August 2017. I have heard that it is rare to fall out of remission, but I don't know that there is enough research on that. Since August 2017, I have been battling the MP symptoms with Prednisone, Tamoxifen and Azathioprine. I also have Polymyalgia Rheumatica, so my rheumatologist has also put me on Methotrexate (which may help with the MP as well). I was told that once you have one autoimmune disease, you are susceptible to getting others. Anyway, I hope my information will help you heal in your journey to remission!