Mesenteric Panniculitis or Sclerosing Mesenteritis

I went to the Mayo in MN last June. I saw Dr. Pardi. I was originally diagnosed 11 years ago. I was having upper right abdominal pain and tightness. I had gallbladder test and colonoscopy to rule out issues there. It showed up on a CT scan. I was referred to a surgeon, who took biopsies to rule out cancer. After seeing several GI docs who admitted that they "were flying by the seat of their pants", I decided to be proactive. I would have a flare up once or twice a year. I was a 40 year old female and didn't seem to fit the mold of being a 60 year old male! haha. I took all of my CT scans with me to the mayo along with the surgical notes and biopsy results. I have had multiple CT scans since my original diagnosis. Parking at the Mayo was very easy, so was navigating the hospital. I dropped off all of my medical docs at my appointment time and they had me return a few hours later. I met with Dr. Pardi and he confirmed that I did have MP. He was optimistic that my CT scans had not changed much over the past 11 years. He said that he hadn't really met someone who has had it this long without it progressing. Knock on wood! He dictated a letter to me that I can give my local GI on what actions and medications I should try with flare ups and if they happen more frequently, I should return to see him. He was very nice and informative. My appointment was not rushed at all. Because I had so much of my medical docs, I only had to be seen that day. I wish you luck and if you have any other questions, please don't hesitate to ask.

Well, I am currently on sick leave from my job; though that may end by April. I have tried to keep things calm in my home, which includes routine. Not rut, but routine. I have given myself a few daily jobs around the house that are non-negotiable, no matter how bad I am feeling. I stopped wearing a watch, greatly reduced listening to the news (specifically politics!) and stopped watching the weather channel. In place of what was my life, I read (who knew mysteries would be so enjoyable?), I (try to!) paint landscapes and in the winter have taken up sewing and knitting. I am quite pathetic at the last two, but they do keep me occupied lol. Because my doctor has not given me the go-ahead to go back to yoga (which I love!), I take some time daily just to do some meditative breathing. If I am up to it and the weather permits (I live in Canada), I go for a walk. Usually the walks are reserved for when my husband is home. It's nice to have the company. Finally a lot of 'drama' or sweating the small stuff has ended. Before this illness, day would drift into day, month into month, season into season. I was so busy that I think I lost sight of a few things. This illness has forced me to reevaluate needs and wants. I hope my experience helps!

I sure agree Kimh -a routine but no drama. I am retired now but taught in reform school, a very large prison,a psychiatric hospital and crazy kids ❤️ In jr and sr high school. But state of mind was so important. Calming, to bed early and positive self talk essential. I travel a great deal and eating bland can be a challenge. Be well-thanks for sharing!

I am envious! Wish I could see him. I haven’t seen a knowledgeable Doctor since being diagnosed. I live far north in Canada and getting a recent CT just seems too much. My Doctor pretends I’m crazy and there is no such disease. 🤪😆

Hello All:
As @billindc mentioned his Mayo doctor's name, I thought you might find this information helpful. It is an introduction to Dr. Pardi and gives some helpful information about his research and experience.
https://www.mayo.edu/research/faculty/pardi-darrell-s-m-d/bio-00086058?_ga=2.259229898.1521299914.1563835831-1221957091.1534862430
Here is a video about a patient at Mayo who had a similar problem. As she will report, Dr. Pardi was also her doctor as well.

I went to the Mayo in MN last June. I saw Dr. Pardi. I was originally diagnosed 11 years ago. I was having upper right abdominal pain and tightness. I had gallbladder test and colonoscopy to rule out issues there. It showed up on a CT scan. I was referred to a surgeon, who took biopsies to rule out cancer. After seeing several GI docs who admitted that they "were flying by the seat of their pants", I decided to be proactive. I would have a flare up once or twice a year. I was a 40 year old female and didn't seem to fit the mold of being a 60 year old male! haha. I took all of my CT scans with me to the mayo along with the surgical notes and biopsy results. I have had multiple CT scans since my original diagnosis. Parking at the Mayo was very easy, so was navigating the hospital. I dropped off all of my medical docs at my appointment time and they had me return a few hours later. I met with Dr. Pardi and he confirmed that I did have MP. He was optimistic that my CT scans had not changed much over the past 11 years. He said that he hadn't really met someone who has had it this long without it progressing. Knock on wood! He dictated a letter to me that I can give my local GI on what actions and medications I should try with flare ups and if they happen more frequently, I should return to see him. He was very nice and informative. My appointment was not rushed at all. Because I had so much of my medical docs, I only had to be seen that day. I wish you luck and if you have any other questions, please don't hesitate to ask.

Hi elle1233, does seem like they are discovering much about this organ. I am thankful for sure. Please feel free to share with us. Although we have some issues/concerns that are similar, many seem very mysterious. As kimh said earlier-we learn by sharing. 👍❤️

Thank you PC.. well, maybe I should put this in a thread. I have had chronic but varying in intensity abdominal pain for 11 yrs, since a gallbladder surgery, many tests, no solution. At Mayo, a CT scan with contrast showed a twisted mesentery, and I was very excited, because it seemed to fit with my pain, and it's bizarre coming and going (apparently it moves around a bit). And, my small intestine motility is very slow, and it feels like something is "blocked".

Anyway, long story short; my Dr. says it can't be the problem because my small intestine itself is not blocked or twisted. I've done some research and found a doc from Ireland who spent time at Cleveland Clinic, who focuses on the mesentery, and have been doing a lot of reading. There are a lot of nerves and blood vessels in this newly deemed organ :), so it seems to me that perhaps if it's twisted, that could impinge on some of those things and cause pain, even if the small bowel is not affected. I also "met" one patient online who had a diagnosis of twisted mesenteric root and said he has had abdominal pain his whole life. (my Dr. says it would be an acute, emergency thing, and mine has been long term, also).

I don't want to knock the doc (lol that rhymed), but he is a Fellow (in training) and young, and as you say, it seems they are really just starting to look into the mesentery as an organ, let alone the problems it might create. It seems possible to me that there could be lower grade, chronic problems that could exist from it being twisted up... and if there are 2 of us.. maybe there are more.

Right now I can't do anything, even though the Dr. rules it out, until I have an answer, it's still on my back burner. I thought I might send my info to the Irish Dr. and see what he thinks. Right now, they say, well, it sometimes is seen in people who don't have pain. Anyway, I thought it might be interesting to find out if there are others with such a finding who have abdominal pain with no cause.