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.

@colleenyoung

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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Thanks for responding. I am not sure what you are asking me. I am from Ontario, not sure what a patient portal is? Or whose nurse. Sorry but I only have my family doctor. Can you help me understand? Thx

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@nancykeenan

Thanks for responding. I am not sure what you are asking me. I am from Ontario, not sure what a patient portal is? Or whose nurse. Sorry but I only have my family doctor. Can you help me understand? Thx

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@nancykeenan, some doctors have online services where you can submit a followup question. I know of some family health team in Ontario that do this. I thought that you might be seeing a gastro specialist and sometimes they have number you can call for followup questions. Since you are in Ontario, you should contact your doctor to get clarification on your questions as OHIP insurance will cover the cost of the followup phone call or visit.

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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 there ellenons, you pls let me know what your gastro doctor said. I was diagnosed with CT scan with panniculitus and I have pain or discomfort every night between 3-5 am have a bowel movement and it goes away until next night. When my gastro doctor saw it said I have IBS. Will be interested in your doctors opinion….will watch fir your response. Thanks Nancy

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@nancykeenan

Hi there ellenons, you pls let me know what your gastro doctor said. I was diagnosed with CT scan with panniculitus and I have pain or discomfort every night between 3-5 am have a bowel movement and it goes away until next night. When my gastro doctor saw it said I have IBS. Will be interested in your doctors opinion….will watch fir your response. Thanks Nancy

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I will share definitely! Pain is worse for me also between 3 and 5 am. Last night was the first time I slept well since it started, the only difference was I took CBD. I have taken it in the morning for anxiety for a few years, works wonders for me. I will switch to PM but it could just be I was so tired.

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@ellenos is that the only time you have it? As soon as I can have a bowel movement mine goes away until next night…..I have no other symptoms at all. I can pretty well eat what I want even….I will be waiting with interest to see what your doctor says. Ask if it could be IBS if they found nothing else wrong.

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@nancykeenan

@ellenos is that the only time you have it? As soon as I can have a bowel movement mine goes away until next night…..I have no other symptoms at all. I can pretty well eat what I want even….I will be waiting with interest to see what your doctor says. Ask if it could be IBS if they found nothing else wrong.

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The CT scan results showed nothing but MP. I have a gluten intolerance – my primary care did a genetic test and it showed positive for the celiac gene but blood test showed non-celiac. She was curious so had me do eat gluten for a few months and then have me do a biopsy of my colon. My colon was fine but it really killed my stomach – I had an ulcer. I was in a lot of pain eating gluten, in my opinion a lot of people are intolerant and don't know it. Doctors seem to think if you don't have celiac then you don't have an issue.

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@colleenyoung

@nancykeenan, some doctors have online services where you can submit a followup question. I know of some family health team in Ontario that do this. I thought that you might be seeing a gastro specialist and sometimes they have number you can call for followup questions. Since you are in Ontario, you should contact your doctor to get clarification on your questions as OHIP insurance will cover the cost of the followup phone call or visit.

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I hadn't heard about a place for follow up questions here…

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@ellenos

The CT scan results showed nothing but MP. I have a gluten intolerance – my primary care did a genetic test and it showed positive for the celiac gene but blood test showed non-celiac. She was curious so had me do eat gluten for a few months and then have me do a biopsy of my colon. My colon was fine but it really killed my stomach – I had an ulcer. I was in a lot of pain eating gluten, in my opinion a lot of people are intolerant and don't know it. Doctors seem to think if you don't have celiac then you don't have an issue.

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I didn't realise this! I have been tested as well (years ago) and was told that I don't have a gluten problem…

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@kimh

I hadn't heard about a place for follow up questions here…

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@kimh, you can always follow-up with your doctors if you ever have questions after leaving an appointment.

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@kimh

I didn't realise this! I have been tested as well (years ago) and was told that I don't have a gluten problem…

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Yes – I started having stomach cramps for months and they could find nothing. Doctors gave up so I gave up gluten and cramps went away. I think the prevalence of so many GF products shows how many people must find giving up gluten helpful.

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@colleenyoung

@kimh, you can always follow-up with your doctors if you ever have questions after leaving an appointment.

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Well, to be honest, I have been very lucky with my team of doctors. We are always in contact with one another, so most of my questions (or ideas from this group) are addressed in a timely way, thankfully. In fact, the doctors communicate with one another, so that each knows all of my problems. Also, any tests that I have done are cc'd to the team, which is helpful in keeping everyone in the loop.

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@ellenos

Yes – I started having stomach cramps for months and they could find nothing. Doctors gave up so I gave up gluten and cramps went away. I think the prevalence of so many GF products shows how many people must find giving up gluten helpful.

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It's worth a shot!

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