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

Allergic to all seafood so nope for me.

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yeah that would be a big Nope if you were allergic to it.

I forget the article I read years ago,where they were experimenting on using it with cancer patients in high doses to help pain.I wish I could find it again.

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@poppy73

Has anyone experimented with high doses of fish oil?

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@poppy73

I have not.

You may find this short article from Harvard Medical School’s Harvard Health Blog:
https://www.health.harvard.edu/blog/fish-oil-friend-or-foe-201307126467
In general, I think we need to keep any recommendations of high-dose supplements in perspective.

That said, if there is any evidence or indications that it may help with mesenteritis, that would be interesting!

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@poppy73

yeah that would be a big Nope if you were allergic to it.

I forget the article I read years ago,where they were experimenting on using it with cancer patients in high doses to help pain.I wish I could find it again.

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If you find it, please pass it on. In the meantime, I have just ordered the book How to be Sick and a paleo diet cookbook….

Liked by Locke

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@poppy73

Has anyone experimented with high doses of fish oil?

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@poppy73 , Not sure if it considered high but my GP has me taking 2,400mg (1,500 Omega-3) in an effort to get triglycerides lowered. I was curious if this might additionally have the benefit of reducing inflammation. I have been taking it for maybe 6 months but have no other information regarding it’s use for MP.
Von

Liked by Poppy73

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@poppy73

Has anyone experimented with high doses of fish oil?

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@poppy73 , I might add that my GP wants me to gradually work up to, I believe, 6 ea. 1,200 mg capsules. Interesting thought. It does cause a little bit of stomach gurgling.
@vdouglas
Von

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@pcfromfm

Allergic to all seafood so nope for me.

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@pcfromfm and @vdouglas and any others who would like to get Omega 3, but can’t use fish oil:

I found that Flaxseed Oil capsules have Omega-3 as well. I have a bottle and see nothing about fish in either the active or inactive ingredients listed on the bottle.

You should probably check with the manufacturer and/or your doctor before taking it just to be sure it will not cause you any allergy problems.

Teresa

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@pcfromfm

Allergic to all seafood so nope for me.

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Thank you Ms Teresa I will look into that!

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@poppy73

Has anyone experimented with high doses of fish oil?

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Hmmm that is quite a bit.That kind of dosage cant hurt.Do you notice if it makes a difference in your pain level?

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@poppy73

Has anyone experimented with high doses of fish oil?

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@poppy73 , No I don’t yet. And I am not going to be a very good pain gauge for fish oil but there are a lot of potential benefits.
https://www.mayoclinic.org/drugs-supplements-fish-oil/art-20364810
This does make a statement that taking fish oil may be helpful for autoimmune disorder.
As @pcfromfm stated, I would not take it if it was not for my GP’s orders.
@vdouglas
Von

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@judy147

Looking back I remember in the lat 15 years having episodes where my stomach felt sore with no other symptoms. I use to say it felt like someone socked me in the gut or like I had been doing hundreds of sit ups or crunches. I wonder if this was the MP. Has anyone else had this. For the past week I have been getting this feeling a lot. Having an MRI enterography on Nov 6. When I went to see my GI doctor I hadn’t really been experiencing too much. But for the past week my stomach has been hurting and I have been slightly nauseated. I can not take steroids and anti inflammatory medications bother my stomach, not sure what other treatments there are for this. Wondering if something I am eating is causing it. Please any input or suggestions appreciated. Suppose to go back to the doctor Dec 5, but I may have to be calling him sooner the way I have been feeling.

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Hello, @vdouglas sorry I haven’t written sooner but I just got my test results from my MRI this week when I went to the doctor. Still very confusing. The MRI did not mention any MP but did show a thickening (towards the sidmoid colon) that was not there when they did my CT scan in July when it showed MP more near my small bowel. I also have a narrowing in the same area as the thickening. He wants me to have a colonoscopy to investigate. I had one 5 years ago that was normal. I asked him if I could wait to January and he said he saw no problem waiting until then (my son is getting married the end of December). He thinks I could have diverticulosis at the best and a remote possibility of colon cancer. Although I may have to get the colonoscopy sooner because I have been experiencing a soreness in my abdomen, more like an ache from when you do too many sit ups. Unfortunately I have not been doing sit ups. I almost feel like I did in July when I was diagnosed with the MP. No diarrhea or bleeding. No nausea, just a back ache besides the soreness in my abdomen. I have way to much to do with baking cookies for the wedding and Christmas to go get the colonoscopy done, plus no one to really take me right now. End of the year and everyone has used their days off.
Sorry I am rambling just stressed.

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@judy147

Looking back I remember in the lat 15 years having episodes where my stomach felt sore with no other symptoms. I use to say it felt like someone socked me in the gut or like I had been doing hundreds of sit ups or crunches. I wonder if this was the MP. Has anyone else had this. For the past week I have been getting this feeling a lot. Having an MRI enterography on Nov 6. When I went to see my GI doctor I hadn’t really been experiencing too much. But for the past week my stomach has been hurting and I have been slightly nauseated. I can not take steroids and anti inflammatory medications bother my stomach, not sure what other treatments there are for this. Wondering if something I am eating is causing it. Please any input or suggestions appreciated. Suppose to go back to the doctor Dec 5, but I may have to be calling him sooner the way I have been feeling.

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Hello @judy147 , thank you for responding, good to hear from you. So that sounds like good news that the MP didn’t show on your MRI but you should confirm that with your G.I. It sounds like your prognosis is better than what you were previously describing, at least I’m hoping so.
You really have a lot going on this month. I wish you well through the wedding. I think a lot of people are going to enjoy those homemade cookies. Even though you have a lot going on you must do what you can without over doing yourself, if you don’t it will just add more stress during a time when you should be enjoying the moment. When the wedding and Christmas have past you can schedule your appointment. Someone will be available to take you to your appointment. Just mention you need a ride while you are passing around the cookies.
Take it slow and easy, it will get done.
Best wishes to you for less pain in the days to come. Keep us posted.
@vdouglas
Von

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@judy147

Looking back I remember in the lat 15 years having episodes where my stomach felt sore with no other symptoms. I use to say it felt like someone socked me in the gut or like I had been doing hundreds of sit ups or crunches. I wonder if this was the MP. Has anyone else had this. For the past week I have been getting this feeling a lot. Having an MRI enterography on Nov 6. When I went to see my GI doctor I hadn’t really been experiencing too much. But for the past week my stomach has been hurting and I have been slightly nauseated. I can not take steroids and anti inflammatory medications bother my stomach, not sure what other treatments there are for this. Wondering if something I am eating is causing it. Please any input or suggestions appreciated. Suppose to go back to the doctor Dec 5, but I may have to be calling him sooner the way I have been feeling.

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I like the trade off; homemade cookies in exchange for a ride! All the best to @judy147 ! It’s somehow ironic that my MP symptoms arose right after my son’s wedding….

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@poppy73

I have had to give up milk….sadly.It just caused to much gas and discomfort.I have been measurably better since. I still eat cheese,moderately….but heavy cream cheese and ice cream never.I am very sad about this.Especially with pie season coming up!

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Yes milk is horrible. My IBS got cured after I left milk and milk products. Lactose intolerance.

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Hello, I have a couple of questions about Mesenteric Panniculitis. I was recently diagnosed with this disease after I was injured in my stomach at work. After about 2 weeks of pain I went in to get a ct scan and this showed up. They have done blood work, exrays and a catscan and it showed no tumors, cyst’s or cancer. I just want to get a better understanding of this disease. I read that it is very rare and there aren’t to many studies on it. So for the people who do have it, it would be very helpful to hear from you all.
1. Can I die from this disease?
2. Is there a special diet I have to follow?
3. Can I have this disease without having cancer?
4. When will the weight loss stop? Will I continue to loose weight until I’m all bones? (I’ve already lost 15 pounds, My brother just passed away from Pancreatic Cancer 3 weeks ago and seeing him suffer like that I’m sure affected my health and weight as well but I just don’t want to end looking frail)
5. Besides Prendisone does anyone know of anything else I can take that would help?
6. Has anyone tried an all natural way of treating it (chemical free) if so what did they use and how effective was it?
Thank You,
Fernando Arce
I look forward to hearing from you.

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