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BillyMac65 (@billymac65)

Mesenteric Panniculitis or Sclerosing Mesenteritis

Digestive Health | Last Active: Oct 23 1:51pm | Replies (1398)

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@angel11

I was also just diagnosed with Mensenteric Panniculitis. I am 38, female with a history of abdominal pain and issues. Mine was also found accidently on a catscan with Iv Contrast. My doctor was also looking for an Inguinal Hernia that was found during a lapro procedure 4 years ago. I am very fatigued, wake up with hot red face, blood in stool, nausea, most of all, abdominal pain. My doctor started me on 40 mg of steroids and I am to see a GI specialist in a few days. Nothing ever showed in my bloodwork prior to the catscan. As this is such a rare condition, I am very concerned about underlying diseases. How do you even know what stage your in? What other conditions will they check for? Is this an auto immune disease?

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Replies to "I was also just diagnosed with Mensenteric Panniculitis. I am 38, female with a history of..."

Hi @angel11. I’m sorry to hear about your recent diagnosis. Here is some information on sclerosing mesenteries, also known as mesenteric panniculitis, that might be helpful for you: http://www.mayoclinic.org/diseases-conditions/sclerosing-mesenteritis/basics/definition/con-20037148

I don\’t know much about this disease, I tried to do my research but their isn\’t much written about it. At least they gave it a name and I have a direction to go on. I cant tell you how frustrating it was to go to doctors and have them tell me they could find nothing. My first symptoms appeared when I was 21 years old and I dealt with it almost on a daily basis. I drank enough Mylanta to fill a tractor trailer truck, it was the only temporarily relief I could find. now Im 58 and my life has had many limitations. Physical stress on my abdomen causes different levels of pain, nausea and periods of confusion. Im 6 ft tall weigh 200 pounds and work construction, I have to struggle to get through a typical day. Im learning to forecast flare ups before they start. I wish there was a magic pill I could take to feel better. I stopped talking about it years ago because no one ever believed me, I just went on with my life. When I was hospitalized 4 years ago they
finally diagnosed me, It peaked my interested to find out all I could about my infliction, best luck to you

thank you very much! the gastroenterologists are doing a full workup, I have been dianosed with this disease and it is so iso rare, they have never even treated anyone with it, they are trying to rule out everyting else. So far, everything from Autoimmune, bacterial, and carcinoids, ect have been ruled out. I am having an MRI this week of my small intestine. My big concern is their lack of knowledge and trying to blame my symptoms on something other just because this is a rare disease. The catscan clearly showed and diagnosed this disease. However, guess I will know more after the mri. I continue to have bouts of diareah, pain in my left groin and abdominal area, nausea, fatique, flushed, bloating. I have been on the steroids for about 2 weeks now. I think they are helping a little. My gastro said since there was no big improvement in a week, that it prob wasnt this disease. Studies show that it could take months for the inflammation to decrease, not a week. I guess my next question is, where do I go for treatment? I live in Pennsylvania, if I have to travel I will.

Thank you. I did reply above. Its very difficult, I am also
trying to figure out if there is anyone out there who knows how to treat this!!!!! Do you take steriods? This is really the only place right now I feel I can go where someone can relate to this. I hope you are feeling better. I will be sharing any information I can find out about this. Thank you for your support!!!

I have a child with SM. Very aggressive case unfortunately. Live in Oklahoma.

I have a daughter with SM and we are in Oklahoma. She was diagnosed in 2008 at age 14. We do have an amazing support group that is private and there are 57 in there as of last week. All variations of SM and MP if you’re interested. I can send you the info to link you in if you want! 🙂 She’s had 17 abdominal surgeries, multiple bowel obstructions over and over, she is TPN dependent as well as a few of the others on our group. Some have occasional flare ups, some have little issues, some are severe. We’re all there though! 🙂

L

We have a girl in our group in Pennsylvania . she’s been inpatient the last few months since diagnosis . …I’d love to get you in touch with her if you like.

Hi there, I saw your posts on here about SM and MP. We have a support group with 57 members if you’re interested. It’s a private group to be able to share, support, receive support, doc info, meds, etc. I’m a mom with a pediatric kid with SM. Please write back I can give you the contact info if you’d like. No, it’s not the yahoo group either. That site has information in files, but not a very good support based group and of sharing and talking. We have 57 members on ours and unbelievable communication and support throughout ALL the members!!

That would be so great!! I really appreciate it! Please let me know and thank you!!!

Im very sorry to hear that. I pray your child gets better.

How do I join the support group?

peggy, please Private message me. we have over 80 people now 🙂 look foeward to heaing from you 

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