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. 🤪😆

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 a teacher too! I love my job, but there is a lot of stress for sure! And the other thing that goes against my nature is the time! Every minute seems as though it is vital! The first thing to go was my watch!

I won't even suggest that you change doctors because I know how hard it is (especially) when you are in the north. Can you at least refer him/her to our site? At least to see what medications to try? How frustrating for you!

Wow – she has such a great attitude! It is nice to be able to have a specific disease with a name, etc; but I found this video great, and anyone, probably most here, are really dealing with a similar type of issue.. chronic abdominal pain/problems that maybe aren't going to go away.

I don't have your diagnosis, but just spent 2 separate weeks at Mayo in Rochester this summer (just returned from second), and I have to agree. Originally my parents were coming with me, but couldn't at the last minute so I went by myself… well with my dog 🙂 . I was really scared, but it ended up being so easy. The scheduling person for my GI doc had all of my tests and consults set up. Once I parked, I never used my car all week. I stayed at the Kahler Inn and Suites, right on the campus and across the street from the Gonda Building, where the GI dept is. Radiology was at the building right across the street. I could literally walk out the door and be at my appointments in 10 – 15 minutes – no driving, no parking, no stress. Everyone was wonderful.

My dog kind of became the "therapy dog" for all the patients staying at the hotel (he is a very sweet, well behaved, senior dog). Whenever we'd go out for a walk, everyone would be happy to see him. One lady said "I'm happy now that I've seen Scooby". It was nice that the hotel was pet friendly and I could have him with me. There are so many beautiful little garden areas and fountains on the Mayo Campus, in the evening we would walk to one and just sit and relax. I called it my "spa vacation".

So, going back the second time was really easy! I would recommend it to anyone. I feel I've gotten a good start and some good information! Unfortunately, it doesn't seem the doctor I was assigned to understands my problems or knows how to treat them, so I am going to move to a center that has specialists in that area, but I loved my experience at Mayo!

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.

Hi @elle, who is the Irish doc?

Morning @elle1233 -sure sounds reasonable to me. It’s good to know there is someone else out there who may share your issues. I have come to understand that as crazy as we have felt, how frustrated our pain is to explain or understand -the more we try to share our experiences-the better it all is. We may be few but we are not alone. Thank you for sharing with us. Your experience at the Mayo sounds good. I hope they discover and pinpoint to help you feel better soon. I understand “years of pain” and your persistence to find out is remarkable.👍❤️Please keep us in the loop!

Hi @billindc,

I’m thrilled to see you back! I so appreciate you joining in with your experience and support for others – thank you!

Dr. Calvin Coffey.
Here is a link to a TED talk he did, I think those of you with Mesenteric problems would find it very interesting. He has great visuals, and also talks about how even now, Doctors are being taught incorrect information about the mesentery.
* * I just had to take off the link to the Ted talk and the article below because I am not allowed to post them.
The talk is very good – if you search his name and Mesentery it should come up – I think it's about the only video on you tube about the mesentery!

Here is a link to a recent review article he wrote.

Sorry I couldn't post the link: try searching Dr Coffey and "The mesentery: structure, function, and role in disease"

I just saw this comment under his you tube video:
"I just heard of him, but it took 47 years for me to be diagnosed with a twisted mesenteric root. I have been in chronic pain my whole life."

I am a scientist, and approach this problems with that mindset. From my limited research, it seems that that very little is known about pathology of the mesentery, except for a definitive problem like panniculitis. Given that, it seems premature to me if someone has an abnormality with it, and is also symptomatic to just dismiss it as a cause or contribution. There really isn't any research. I also wonder if twisting or structural abnormalities are even reported sometimes, because it might not be what the radiologist is looking for (i.e. if someone has abdominal pain, they would likely focus on the bowels and more 'well known organs" . Just some thoughts.

I just watched the TED talks. Thank-you for this information…I will be discussing this with my specialist today. My concern is that with so little research being done, do we know if MP will develop into something more ominous?

Hi @elle1233,
I see that you wanted to share link to information to share with fellow members. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe. Clearly the links you wanted to post were not spam. Please allow me to post them for you.

– Dr. Calvin Coffey's TED talk https://youtu.be/pP-h001GyP8
– The mesentery: structure, function, and role in disease by J Calvin Coffey and D Peter O'Leary, PhD (2016) https://www.researchgate.net/publication/309040884_The_mesentery_structure_function_and_role_in_disease

Thank-you, thank-you!!!

Glad you found it helpful. Well, it seems there has been very little to no research done on the mesentery, let alone problems with it. Fortunately, it looks like that is changing, but that takes time. At least it's happening. I had never heard of MP until I came on this site, I started looking into the mesentery because of my twisted one :). Of course there are no studies at all on that. The mesentery is chock full of nerves and blood vessels so makes sense to me that it could be a source of pain/problems itself, and right now that is overlooked, unless you have MP where you have a mass (i.e something visible).

My current doc says my problem can't be the mesentery because some people have twisting/torsion and don't have pain or problems. As you said, there is no research on the issue, so do they really know? Maybe some people do. Or eventually do. He says they only worry if it gets bad enough to cause your small instestine to be blocked or inflamed, but maybe it could progress to that. Probably a lot of people (or docs) never even knew someone with pain had abnormalities in the mesentery because they probably don't look to it as a source of problems. So, while my doc doesn't think mine is contributing to my problems (he could be right, but since no cause can be found.. I'm going to continue looking into the mesentery, if nothing else, I'll learn something :).

I just read a fascinating case study ( I could put the link if anyone is interested). Interesting how I found it – I did a google search for one of my diagnoses: reactive fovealor hyperplasia (stomach) , and one of the first things that came up was a woman who had this, and turns out her problem was the 3 main vessels to the mesentery were blocked! So the origin of her problem was the mesentery.

Let me know what your specialist says!