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

Interested in more discussions like this? Go to the Digestive Health group.

@pcfromfm

Not good! Sounds terrifying Kim. Sounds like time yo try something else. I was on Pred for two years at one time and found other big issues and had to come off. Moon face, hump back, periods of sadness, don’t think it was any friend to my liver either-not sure. But nothing compared to your experience. Hugs!

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Okay PC, now you brought tears to my eyes because I know the hugs are genuine! It's been a lot and I also suffer from depression, so you're right that the medications don't help with that! I've come to the conclusion that moon face hides the wrinkles….

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@kimh

Okay PC, now you brought tears to my eyes because I know the hugs are genuine! It's been a lot and I also suffer from depression, so you're right that the medications don't help with that! I've come to the conclusion that moon face hides the wrinkles….

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Lol! Good attitude!❤️ That’s what it takes-all we have sometimes! Stay well and safe !

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I just had a CT this morning that showed mild mesenteric panniculitis. Very severe right pain particularly at night for a week or so, xray showed a possible kidney stone. CT showed no kidney stone, just MP. Given the struggles here to get diagnosed, I am quite impressed that this was done so quickly. I have an appt with a local gastroenterologist next week. Reading these comments has been very helpful, thank you! Since I thought it was a kidney stone, I followed the suggestion of not sleeping on my side, that helped the pain. I don't have any underlying illness that I know of so starting out is a bit scary. I am 68 yr old female, live outside of Boston.

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@ellenos

I just had a CT this morning that showed mild mesenteric panniculitis. Very severe right pain particularly at night for a week or so, xray showed a possible kidney stone. CT showed no kidney stone, just MP. Given the struggles here to get diagnosed, I am quite impressed that this was done so quickly. I have an appt with a local gastroenterologist next week. Reading these comments has been very helpful, thank you! Since I thought it was a kidney stone, I followed the suggestion of not sleeping on my side, that helped the pain. I don't have any underlying illness that I know of so starting out is a bit scary. I am 68 yr old female, live outside of Boston.

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Hi @ellenos, welcome to Connect! I am so glad that they are jumping on your situation and taking care of you in a timely manner. That is important as you don't want it to escalate to something worse. Do you have to see your gastroenterologist before they start you on an corticosteroids or any other medication?

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@ellenos

I just had a CT this morning that showed mild mesenteric panniculitis. Very severe right pain particularly at night for a week or so, xray showed a possible kidney stone. CT showed no kidney stone, just MP. Given the struggles here to get diagnosed, I am quite impressed that this was done so quickly. I have an appt with a local gastroenterologist next week. Reading these comments has been very helpful, thank you! Since I thought it was a kidney stone, I followed the suggestion of not sleeping on my side, that helped the pain. I don't have any underlying illness that I know of so starting out is a bit scary. I am 68 yr old female, live outside of Boston.

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Welcome @ellenos from Alberta Canada. You live in one of my favourite cities! Sounds like you are doing quite well. Look forward to hearing what your Doc says! ❤️

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@amandaburnett

Hi @ellenos, welcome to Connect! I am so glad that they are jumping on your situation and taking care of you in a timely manner. That is important as you don't want it to escalate to something worse. Do you have to see your gastroenterologist before they start you on an corticosteroids or any other medication?

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They set me up with an appointment for next Tuesday with a gastroenterologist which is wonderful. Not sure what will happen with meds, I have chronic kidney disease so have to be careful plus I cannot take prednisone, makes me feel psychotic. Hard to imagine putting up with this pain.

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I have found there are foods which irritate it, have you noticed? I can’t eat, corn or onions in any form, few processed foods, no strong spices, no alcohol, small amounts of food at any setting, less Friedan greasy foods, I can’t do seafood either. I struggle with most herbal remedies too. These are my biggies! I must get lots of rest, as much sleep as I can and stay positive. We are all mostly different, many have certain foods to avoid. Try to drink lots of water, Especially warm if you can. All seem to agree with the last suggestions. I tend to stop eating if I’m in a difficult time and resort to oatmeal, rice, boiled chicken. Maybe try to find your safe foods-

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@kimh

Yes, my GI works out of Mac. His name is Dr. David Armstrong. You may have to wait a while for a first appointment, but honestly, well worth the wait! Keep me posted!

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Hi there, did not see my gastro only had telephone consultation to review CT scan. He thinks I have IBS not pannaculitis . No other system except this pain I have down low in my right side every night between 3 am and 5 am. I rub my hysterectomy scar and I seem to get relief, I get up, I hope I have gas as it relieves the pain I go to bathroom and pain is gone until next morning. I see no correlation with food I eat. He told me to take metamuscil, which I am doing but not sure why? Told me to stop taking my 5 prunes a day to help me keep stool soft it certainly has made my bowel movements a better consistency. I think it could be adhesions from my hysto and ruptured appendix and gullbladder but I am not a doctor. P#in us right over the cecum valve but when I mentioned that he just poopooed it away. I may call your doctor Armstrong and see what he says. Also might look into the massaging thing. I think it is called clear passage. Anyway not any better off mentally or physically. Talk again, hope you are fine!

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@ellenos

They set me up with an appointment for next Tuesday with a gastroenterologist which is wonderful. Not sure what will happen with meds, I have chronic kidney disease so have to be careful plus I cannot take prednisone, makes me feel psychotic. Hard to imagine putting up with this pain.

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Hi @ellenos, I add my welcome. You may also be interested in following the Kidney group here: https://connect.mayoclinic.org/group/kidney-conditions/

All the best with your GI appointment next week. Have you started to organize your questions in a list?

@nancykeenan, it sounds like you have some lingering questions since your phone consultation with your gastro. Do you have access to a patient portal or nurse with this gastro to get clarification?

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@nancykeenan

Hi there, did not see my gastro only had telephone consultation to review CT scan. He thinks I have IBS not pannaculitis . No other system except this pain I have down low in my right side every night between 3 am and 5 am. I rub my hysterectomy scar and I seem to get relief, I get up, I hope I have gas as it relieves the pain I go to bathroom and pain is gone until next morning. I see no correlation with food I eat. He told me to take metamuscil, which I am doing but not sure why? Told me to stop taking my 5 prunes a day to help me keep stool soft it certainly has made my bowel movements a better consistency. I think it could be adhesions from my hysto and ruptured appendix and gullbladder but I am not a doctor. P#in us right over the cecum valve but when I mentioned that he just poopooed it away. I may call your doctor Armstrong and see what he says. Also might look into the massaging thing. I think it is called clear passage. Anyway not any better off mentally or physically. Talk again, hope you are fine!

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Maybe your pain has to do with scar tissue?? I have heard that MP can come on after abdominal surgeries. My MP was first diagnosed by CT, and subsequently by surgical biopsy to rule out anything worse (lymphoma). So in my case, MP was the better diagnosis.

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What did they biopsy? A piece of the mesentary or did they see something to biopsy. Mine was diagnosed by a CAT scan too. No other visible lump or anything. Blood work was all,okay. Can You let me know what they biopsyied please. He did not even mention that… Thanks

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I'm guessing (sorry!) part of the mesentery??? They had cameras set up so that they could use the biopsy as a teaching tool! Usually, they can diagnose from a CT, but I think in my case, they wanted to rule out other things.

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