Mesenteric Panniculitis or Sclerosing Mesenteritis

Posted by BillyMac65 @billymac65, Dec 6, 2012

I thought I would start a discussion for patients with Mesenteric Panniculitis. From what I know, this auto-immune disorder has three stages to it, each with differing names (Mesenteric Panniculitis, Schlerosing Mesenteritis, Retractile Mesenteritis). Typically, this appears to be in older individuals with some other under-lying problem (Lymphoma, tumor, diverticulitis).

I have an atypical presentation because I do not have an underlying cause. The doctors seem to be hoping for Lymphoma to appear so they can treat it and have the auto-immune go away. I am interested in hearing from others with this. I had this diagnosed in 2011, so I am interested in hearing more about what this is like to live with. I want to hear from others who also have an atypical presentation. Did is come back? Also interested in hearing from those with Lymphoma. How was the treatment? Did it address the auto-immune?

Pretty much, I am interested in hearing from anyone who has had this, so i can better understand it, and not feel so alone with this!!

Bill

I haven’t talked to my doctor yet but I have my post op appointment next Wednesday to go over everything. I just saw the diagnosis on the lab results and couldn’t find much information so was hoping someone could help me make sense of it. Thank you for reaching out I appreciate it.

REPLY
@lauramolzen

I haven’t talked to my doctor yet but I have my post op appointment next Wednesday to go over everything. I just saw the diagnosis on the lab results and couldn’t find much information so was hoping someone could help me make sense of it. Thank you for reaching out I appreciate it.

Jump to this post

Of course. Please let us know how things go for you next week.

REPLY
@amandajro

Hello @lauramolzen and welcome to Mayo Clinic Connect. I can see you have reached out to @lisas444 with interest in joining a group she has.

Mayo Clinic Connect members who may be able to help with your questions include @nancykeenan @kccat @constancelee .

Did you doctor mention the SM to you and talk to you about it?

Jump to this post

Hi Laura, has your doctor had a consultation about the findings of your laparoscopy? That’s the first place to start. If the doctor is not comfortable with some of your results, they should give you a referral. None of this should be a guessing game for you. Make an appointment with the doctor if you need to.

REPLY
@amandajro

Hello @floridamike and welcome to Mayo Clinic Connect. You seem motivated and interested in seeking a second opinion to rule out any additional and potential reasons for your symptoms.

You may use this link to request an appointment: http://mayocl.in/1mtmR63

Will you keep us posted?

Jump to this post

Thanx for the link. I requested an appointment a couple of days ago and now just waiting to hear back from them.

REPLY

Just found this forum. M/55. I have been dealing with an anal rash/pruritis since January. Went to see a dermatologist finally, and he prescribed tacrolimus ointment for it and antibiotics. Thought I'd try the ointment first, but it was a nightmare. It causes a sensation of heat and an urge to defecate that lasted for a few days, but then it went away. However, I continued to have loose stools. 5-6 days later, I started having generalized abdominal pains, but mainly lower abdomen/pelvis. I stopped the ointment, as I thought it had something to do with the pains b/c it messed up my digestive system. However, the pains did not subside, and my GP ordered a CT. Like many of you, the only thing it showed was a mildly hazy central mesentery, no tumors or enlarged nodes. The differential diagnosis was MP. I didn't even know there was such a thing. I'm still having pains and have an appointment with my gastro but not for another 3 weeks. I have no idea if my anal issues and this are related, but it all seems like a bit much for a coincidence. I don't know what this portends, but I'm getting increasingly anxious about it. Anyway, that's my story; hope there's an end to this b/c the pains, while not horrible, are not fun.

REPLY
@ericd838

Just found this forum. M/55. I have been dealing with an anal rash/pruritis since January. Went to see a dermatologist finally, and he prescribed tacrolimus ointment for it and antibiotics. Thought I'd try the ointment first, but it was a nightmare. It causes a sensation of heat and an urge to defecate that lasted for a few days, but then it went away. However, I continued to have loose stools. 5-6 days later, I started having generalized abdominal pains, but mainly lower abdomen/pelvis. I stopped the ointment, as I thought it had something to do with the pains b/c it messed up my digestive system. However, the pains did not subside, and my GP ordered a CT. Like many of you, the only thing it showed was a mildly hazy central mesentery, no tumors or enlarged nodes. The differential diagnosis was MP. I didn't even know there was such a thing. I'm still having pains and have an appointment with my gastro but not for another 3 weeks. I have no idea if my anal issues and this are related, but it all seems like a bit much for a coincidence. I don't know what this portends, but I'm getting increasingly anxious about it. Anyway, that's my story; hope there's an end to this b/c the pains, while not horrible, are not fun.

Jump to this post

Hello @ericd838 and welcome to Mayo Clinic Connect. Thank you for joining this discussion and sharing your history so that other members can connect with you.

Can I asked what you were advised to do while you wait 3 weeks for your gastro appointment?

REPLY
@amandajro

Hello @ericd838 and welcome to Mayo Clinic Connect. Thank you for joining this discussion and sharing your history so that other members can connect with you.

Can I asked what you were advised to do while you wait 3 weeks for your gastro appointment?

Jump to this post

Nothing, unfortunately. My problems started to subside the day I had my CT scan, so when they called me with the results I told them I was feeling better. But they flared back up. My gastroenterologist is out of town, which is one reason for the delay. I may see if I can get a referral to someone else sooner, but don’t know if that will help.

REPLY
Please sign in or register to post a reply.