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

@bakb

Please alllow me to join your group. I have MP for approximately 5-6 years. I am maintaining between flare ups on a low maintenance dosage of hydrocodone. I am interested if others have dietary thoughts to share and/or exercises to help. Thank you.

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@bakb Welcome to the group.

Thank you. This is a great place to share, I don’t feel so alone. Already learning from others, ready to make changes and hopefully feel healthier.

@shareie

I am in pain and in the er every 2 months….. moraphine,Nausea rx, prednisone…given at er t hen continue prednisone 5 days…I’m auto immune , still trying to figure out what involves and no one Dr wise can answer any questions…my intestines swell and I hurt base d during attacks which last until I get prednisone etc…..I am tired of routine uncontrollable routine I have every two months….what’s your advice and is this similarity to anyone? Have Been told my condition is very rare

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Hi there,It seems like you are looking for dietary solutions, and I might add that for some they don't work.  For me diet has been my savior. I have never taken any steroids or any other
meds although I have seen a Messenteric specialist.  I do go through
periods of pain that are bad and it is only when I cheat.  I think I am
fortunate to have an autoimmune version of this.  I have done two things
to place my symptoms in remission:1. I am on the Paleo autoimmune protocol2. I take the following gut supplements as recommended by Kris Kresser (here is the link: http://my.chriskresser.com/the-supplement-guide/).  I take the list for digestive disorders and the list for autoimmune.Bullet 2 has changed my life, allowed me to cheat on my diet and basically
removed my bloating.  Some people go on FODMAP diet, but the Paleo
autoimmune protocol works for me.  I know that many folks don't have an
autoimmune version, but I imagine that these supplements and probiotics
would help with general health. I used to have Gerd (acid reflux for 11
years, taking 300mg of zantac daily) and now I don't take a single pill.Best of luck to you!take care,Doron

@shareie

I am in pain and in the er every 2 months….. moraphine,Nausea rx, prednisone…given at er t hen continue prednisone 5 days…I’m auto immune , still trying to figure out what involves and no one Dr wise can answer any questions…my intestines swell and I hurt base d during attacks which last until I get prednisone etc…..I am tired of routine uncontrollable routine I have every two months….what’s your advice and is this similarity to anyone? Have Been told my condition is very rare

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Thanks Doron, and yes I am looking for dietary solutions to my MP. Yes I have auto-immune and diverticulitis. I will certainly look at these suggestions and bring to my local MD. You said you saw a mesenteric specialist – may I ask where he/she was located? I am in SD so Mayo clinic is a possibility. I know Dr. Pardi is at Mayo clinic but to get an appointment takes months. Thus looking for possible solutions to help me now. I thank all for this group as I was very frustrated before. At least now I have suggestions and will work on what works best for me. 🙂 Betty

@shareie

I am in pain and in the er every 2 months….. moraphine,Nausea rx, prednisone…given at er t hen continue prednisone 5 days…I’m auto immune , still trying to figure out what involves and no one Dr wise can answer any questions…my intestines swell and I hurt base d during attacks which last until I get prednisone etc…..I am tired of routine uncontrollable routine I have every two months….what’s your advice and is this similarity to anyone? Have Been told my condition is very rare

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So my Dr. is in Chicago, but he is on leave for almost a year now.  Once he comes back I will let you know.  I used to diet without the supplements, and still had gerd and felt bloated quite often. Now with diet and supplements I don't feel bloated.  Most of these diets are elimination diets and you can add things back in slowly.  Good luck, Doron

Hi, just got the mesenteric panniculitis diagnose the other day. The Dr. didn’t even call me, he had his staff do it. They did say if I had any question to call him. After a little reading here, I’m not sure how to take his aloofness. They also found a small node on my adrenal gland. They want to CT again in 6 months. I’m kind of proactive, I’m not just going wing this. The direction I feel it taking me is concerning. I need to find out what not to eat, in a simple format that I will follow. Here is my first step, talking about it with my peers.

@mcminmark

Hi, just got the mesenteric panniculitis diagnose the other day. The Dr. didn’t even call me, he had his staff do it. They did say if I had any question to call him. After a little reading here, I’m not sure how to take his aloofness. They also found a small node on my adrenal gland. They want to CT again in 6 months. I’m kind of proactive, I’m not just going wing this. The direction I feel it taking me is concerning. I need to find out what not to eat, in a simple format that I will follow. Here is my first step, talking about it with my peers.

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Hi @mcminmark, I was diagnosed with MP last May after a couple of months of wondering what was going on. I was diagnosed via CT Scan. I was then referred by my main physician to the GI Doc. I have yet to meet the actual Doctor. When I go to the GI Clinic I meet with the Nurse Practitioner. She is very knowledgeable and answers all of my questions. At first it kind of annoyed me that I couldn’t talk to the Doc, but I have gotten used to, and actually like the Nurse Practitioner. I have been using the FODMAP diet http://www.ibsdiets.org/fodmap-diet/fodmap-food-list/ which has helped me a lot. I’ve said it before, having MP is like playing Russian Roulette with food. I have found that I can no longer eat raw vegetables, nor can I eat anything made with corn. (I miss popcorn the most). As the FODMAP suggests, when you introduce new foods, do it one at a time and wait a couple of days to see what happens. I tried to eat a salad a couple of weeks ago, not a lot of lettuce, but some with raw carrots, and I set off a flare for a couple of days. A small amount of raw carrots hadn’t bothered me before, so it must have been the lettuce. I don’t eat any kind of beans anymore, either. Anything really high in fiber is a problem. At the beginning of the worst of my MP, I was drinking a lot of banana smoothies made with Kefir. I was told to eat white rice, white bread,etc. I had a lot of chicken broth. It’s a slow frustrating process. But you have to be patient. I lost eight pounds at first, which should be a dream come true, but I felt awful. As soon as I started the FODMAP diet, I put the weight back on and felt much better. I didn’t take any pain killers or supplements, but that doesn’t mean those things won’t work for you. Everyone is different. I did take Prednisone for two months.
Next week I go for my third CT Scan for a recheck. If this one is as good or better than the last one, I don’t have to have another scan. I will just follow my diet and my instincts. I am hoping for a good report. I’ll let everyone know.
I hope some of this was helpful.
Take Care of yourself.

Liked by denia

Thanks so much @bertbiz for the reply! A lot of the “do not eat” things on that diet I have already stopped eating… just over many years, just listening to my body say no. But there are many that I eat regularly that I will need to stop, like cheese, mushrooms and avocados.

I think I need to find a knowledgeable endocrinologist in the Portland OR area (OHSU). If anyone recommends one… please let me know. I’ll spend the weekend reading all this thread, and whatever else I can get to.

Hello @mcminmark,

We are so glad that you’ve come to Connect, and to know that you are an advocate for your own health. Thank you@bertbiz, as always, for joining in the conversation with your valuable insight.

I’m tagging @billymac65 @dotb @danrofohio @mardellepoff @billindc @vdouglas @amyd @doron @bakb @vmc123 @jimmymac @angel11 @snoopdog @eddieg @tlw32 @mommasaid @buckeyze @peterhamilton @tardis6167 @hardclose to join in; there’s a great group of people here ready to share their experiences.

I also wonder if @winnah @tavi @tllamber @dicknlou @jmbazan @katieslost @lyndamm @kathyzendner @barbararickard have any recommendations for you, as they have discussed visiting/living in the Portland, OR area.

@mcminmark, have you been put on any medications to manage the flare-ups?

@kanaazpereira

Hello @mcminmark,

We are so glad that you’ve come to Connect, and to know that you are an advocate for your own health. Thank you@bertbiz, as always, for joining in the conversation with your valuable insight.

I’m tagging @billymac65 @dotb @danrofohio @mardellepoff @billindc @vdouglas @amyd @doron @bakb @vmc123 @jimmymac @angel11 @snoopdog @eddieg @tlw32 @mommasaid @buckeyze @peterhamilton @tardis6167 @hardclose to join in; there’s a great group of people here ready to share their experiences.

I also wonder if @winnah @tavi @tllamber @dicknlou @jmbazan @katieslost @lyndamm @kathyzendner @barbararickard have any recommendations for you, as they have discussed visiting/living in the Portland, OR area.

@mcminmark, have you been put on any medications to manage the flare-ups?

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@mcminmark – private message sent with name of endocrinologist.

@winnah

Hello, I was diagnosed with mesenteric panniculitis just a few days ago at the ER. I am looking for forums or groups with others that have the same diagnosis and information to share. I had a follow up today with my primary doctor and I am pretty sure he Googled it right before he walked into the room because he said exactly the same words I read when I googled it a couple of days ago. He didn’t seem too concerned and said to take Tylenol for pain and we would do a follow up CT scan in 3 months. I finally convinced him to refer me to a gastro doctor at OHSU. But that will take a few weeks. I am not even sure how they can know it is MP without any further testing or biopsy? Any suggestions of where I can find out more info would be wonderful!

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Hi, I am just seeing an email you sent me back in June! I hope I had responded, but if not, I wanted to see how your husband is doing. I have not been on the forum for about 8 months, and just started back since I am going through a flare-up and have decided to really get some answers, possibly up at Mayo. How are things? ~Bll (Silver Spring)

@kanaazpereira

Hello @mcminmark,

We are so glad that you’ve come to Connect, and to know that you are an advocate for your own health. Thank you@bertbiz, as always, for joining in the conversation with your valuable insight.

I’m tagging @billymac65 @dotb @danrofohio @mardellepoff @billindc @vdouglas @amyd @doron @bakb @vmc123 @jimmymac @angel11 @snoopdog @eddieg @tlw32 @mommasaid @buckeyze @peterhamilton @tardis6167 @hardclose to join in; there’s a great group of people here ready to share their experiences.

I also wonder if @winnah @tavi @tllamber @dicknlou @jmbazan @katieslost @lyndamm @kathyzendner @barbararickard have any recommendations for you, as they have discussed visiting/living in the Portland, OR area.

@mcminmark, have you been put on any medications to manage the flare-ups?

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Hi @kanaazpereira, thanks for all the tags! My Internist had his staff call this diagnoses to me. I asked for a copy of the report, which I got in the mail yesterday. They do say if I have any questions to ask, but I’m asking myself if there is really a reason to meet with him, or if I should move to a good GI Dr.. The radiologist seemed to be the one driving here, not the Internist.

Getting to your question, no. No medications have been brought up. I have read here some have taken prednisone and tomoxofin. I don’t take anything for the pain, mainly because I hear long-term use of inflammatory drugs are not a good idea, plus I want to address this, not mask it.

I’m off to Mexico for two weeks here in a few days, extra concern there on the food/water. Will be interested to see how the lack of work stress and the relaxation play into this.

Thanks,
Mark

Hello, My name is Natalia, I am new here and I am 42. I have been diagnosed with Mesenteric Panniculitis and I don’t really understand much about it, and I am trying to Conceive does anyone know of anyone who is/was pregnant with this or anything about getting pregnant? How will it effect me?

Hi All,
I had my six-month follow up CT Scan on Monday, March 6th. I just got the following note from my GI Doc: ” CT shows residual haziness in the mesentery, but no recurrence of panniculitis. We will likely need to follow this in another 6 months, but we can discuss further at your appointment on Monday.”

So I see the GI Doc next Monday. Good news, the lymph nodes aren’t swollen. Bad news, which isn’t so bad, is I have to have another CT in six months. I made the mistake of trying to eat something new a few days before my CT. Of course it set everything off. Damn it. If I’d only waited, maybe things would have been clearer. Who knows?! I figure the other good news is she didn’t ask me to come in sooner than our scheduled appointment.

Anyone have an opinion?

@bertbiz

@madeinheaven

Hello, My name is Natalia, I am new here and I am 42. I have been diagnosed with Mesenteric Panniculitis and I don’t really understand much about it, and I am trying to Conceive does anyone know of anyone who is/was pregnant with this or anything about getting pregnant? How will it effect me?

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Hello @madeinheaven,

Welcome to Connect. I’m sorry about your diagnosis, but we are so happy that you’ve come here to find some support.

I’d like to introduce you to the many Connect members who live with mesenteric panniculitis. Please meet @billymac65, @mommasaid, @vdouglas, @doron, @ngilson, @bertbiz, @mardellepoff, @txbear and @miker46, @adelecj57, @amyd, @lynn1824, @winnah, @gmeg, @billindc, @pkrka, @marip, @angel11, @dotb.
Some, like you, were diagnosed recently, and other members have been managing the condition for quite some time. You may also wish to read the discussion here: http://mayocl.in/2eZsrdG.

I would also encourage you to see this patient story, and ongoing research done by Mayo Clinic with regard to Mesenteric Panniculitis (MP):
http://mayocl.in/2i5EIlB

@justjen822, had posted in the past about MP and pregnancy, and I sincerely hope she will return with some insight for you.
Natalia, have you discussed your wish to conceive with your doctors? What do they advise?

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