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.

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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@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.

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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.

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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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@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.

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@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)

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@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

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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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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

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@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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I have been diagnosed with MP for a year, I had triple negative breast cancer 3 years earlier so they did not want to give me a steroid because of the danger of the cancer recurring. I have been on colcrys given to me by my gastro dr. My insurance refuses to cover the medicine now so I have been switched to colcrys/probenecid we will see how that works, is anyone else on this particular medicine. I also have Interstitial Cystitis and am following that diet. Eating is a challenge always. Loss of appetite because so much makes me sick. Would appreciate hearing anything to help. Thank you all and God Bless.

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Hello @susierq111,

I’m so sorry that you are going through all this, but glad that you’ve found the Connect community.

Here is some information from Mayo Clinic, about using probenecid and colcrys (colchicine) combination: http://mayocl.in/2mMTHmB

I found a few members who have been on colcrys for many different conditions; please meet @frankd696, @gonefishinmt @sbrooks1986 @lisas444 @santepublique @dkmeow @nancysm @healingheart @michellec78.

I would like introduce you to @tbeckys @cbs61752 @kas1792 @operationqueen @rdrdhap @suzette @barb54 @8dzaweek @lexi @jeananderson2014 @mgnunez75 @Weedy @praymond234 @mogulers @kerrilynn1 @jmgm @charlenem, who have talked about Interstitial Cystitis, and I’m confident that they will return with their insights.
You may also wish join this discussion “Interstitial Cystitis – I would like to connect with others” http://mayocl.in/2babJXN

@susierq111, probenecid is also used to prevent or treat problems that may occur if too much uric acid is present in the body; did your doctors give you an explanation for prescribing it? Besides diet, have you thought about physical therapy or bladder training to help find some relief from the symptoms?

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