Welcome! We are a group growing slowly who find it easy to be supportive and informative when possible. We have members from so many areas of this world. I am not in Chicago but hope you find a doctor to help. Now that the mesentery has been declared an organ maybe we will have more success with help and research. There is also a group on Facebook you may want to join. Your wife is lucky to have you in her corner! How is she feeling? How does the disease present?

Hi @pcfromfm, thank you and my wife has been in touch with a lady that runs a FB page but has yet to connect. I wonder if this is the same one? She is constantly feeling sick, cramping/ bloating, and tightness. It was discovered through an MRI and CT. I wish I could do more for her but I feel helpless!

Sounds like you are already doing a great job-just increasing your knowledge and understanding of how this disease presents and being patient with her frustrations and coping. Each will change periodically. We all struggle with managing. Have you found foods that are triggers? Many of us have found more rest-just being prone and relaxing helps -I am in bed most evenings by 7. (A very boring person!) also I have juggled diet for many years and have -for now-come up with definite foods that I have eliminated and that has helped a great deal. I live very far north and have no Doctor who knows anything about my issues. So I must be very careful. Have you come up with any especially positive coping skills?

Facebook page is called-“ Sclerosing Mesenteritis”. It’s s closed group. Good information and lots sho share. I always figure the more we know the better. So many have different symptoms, side effects, perspectives. Etc. You never know when something will click to help!

we are still trying to figure out what triggers she has, for sure it seems stress! whenever she gets worked up it gets worse. we are still trying to find doctors in our area.

she has joined this group, thanks for the info!

Great-all good! I have done many elimination diets to help figure out my triggers. I was a teacher in prison, reform school and psychiatric hospitals, plus jr high and high school. So -lol-needless to say-stress played a big part of my life! But now retired I notice it’s effects much more clearly. Be well!

Best doctors are Dr Alexander and Dr Pardi at Mayo Clinic in Rochester, MN. Google contact info, send letter with symptoms, test results. Request appointment.