Mesenteric Panniculitis or Sclerosing Mesenteritis

lol

I had a difficult night with pain and nausea to be honest. I am on oxycodone for pain and ondansetron for nausea.

Hi Von,
I guess what mainly brings me here is the need to speak with others who 'get it'. Also, I am very interested if there have been any advances made since my last flare up (April, 2014).

On March 19, 2014 (the date is cemented in my brain!), I had a very bad fall on black ice. Within two weeks, I was in the hospital with severe abdominal pains. Originally, the emergency doctors thought that I may have had kidney stones which were shattered by the fall and causing the pains. After a CT scan, it was determined (like so many others here) that I have MP or lymphoma. By June, I ended up hospitalized and was told that I had many inflammations and that one specific one was larger than a quarter and had grown from one CT scan to another. After undergoing surgical biopsy, it was determined that I did not have lymphoma (thankfully!), but that I did have MP. I was immediately put on prednisone and torredol for pain. I was 49 at the time. I ended up taking prednisone until mid November of 2014 and was taken off because I began experiencing esophageal spasms (which I feel a heart attack might feel like!) Again, I was hospitalized for another 10 days for pain management and to rule out any heart issues.

Beginning in August this year, I started feeling the MP symptoms return, but because I was going through a lot at the time (my father had recently been diagnosed with cancer and I had just thrown a wedding for my son, house renovations, overseas relatives staying with us etc.) many people thought it was stress and anxiety. My GP did put me on a short therapy of prednisone in the hopes that we had caught it early. I was on 40 mg. of pred for three days, 35 for three days etc. until I was weaned off. I began feeling better, but three weeks ago, the symptoms have come back with a vengeance. I will be seeing my specialist next Friday and was hoping that there would be some advances made in therapy options since 2014. Sometimes I feel like this is a lonely illness because of it's rarity and the fact that there is not a lot of information 'out there'. I do want to mention that I am quite lucky in that I have a very kind and supportive family for sure...
Sorry for writing so much...

Morning @kimh this is a fairly quiet group but we are here! Please don’t be sorry about talking. No matter what your concern-just talking to us helps us all be brave enough to talk more and thus be more supportive. Our stories may vary but knowing there are others who share this crazy illness and you aren’t alone -is good. Not many understand this pain, the frustrations and concern that goes hand in hand with mp. For many of us it’s a day to day struggle, for sum it’s a sudden eposodic event. But for many it’s a way of living that finally has a name and we finally know others are in this with us. A number of different attempts to “make it better” work for a variety of “us” but bottom line: anything that helps even periodically is welcome! I work hard to keep my stress and worry low, watch my diet carefully and to regognise the inflammation signs growing and do what I can to help that. For me, it will all come back again at some point, always does-but now we have more research, some doctors who are into our illness and a couple of internet groups who help to remind us we are not alone and our pain is understood. Every kind of support helps. Keep the faith-thanks for talking!❤️

Hi there! : ) Sorry I did see this last night.I am doing better. It is a good thing since I was turned down by my provider to go to a specialty care center in Seattle due to the fact that they thing they can handle my issues "in house". Got to love the new Kaiser Permanent !

How are you doing these days?

Have you tried a elimination diet?

lol communication has never been a problem for me, as you may have guessed! Can I ask if you are on an anti-inflammatory diet?

HI Poppy,
Personally, I think you need a specialist and someone who is staying current with therapy options. I'm not sure how the American heath system works as I am Canadian. We do have access to specialists although it can sometimes take some time before getting in. If you go to your specialist annually, it is quicker to get in for an appointment. As for me, I'm mainly on pain management and anti-nausea meds until I see the specialist next Friday. I have been told that if I go to Emergency at the hospital, I will be admitted to get the pain under control, but to be honest, I hate going to the hospital. Not many people know what I am talking about, insist on pressing on my abdominal area, always with a confused look on their faces and a worsened aggravation of the abdominal area. I'd rather deal with the pain at home until I can get on some treatment plan.

No I haven't as I didn't have symptoms for quite a long time now. At this point, I don't have much of an appetite anyways and when I do eat, I try not to eat too much. I feel like digesting food a (as well as bowel movements) seem to increase the pain.

Not that that is the answer to everything,but it is something to look at. For me it was my stinking Latte. I usually have latte in the afternoon.You know us Seattle folks,we live on the stuff. The combination of dairy and acidic coffee sent my digestive tract into painful fits.Which inflamed everything. I am better now...but I don't want to say that too loud.