Mesenteric Panniculitis or Sclerosing Mesenteritis

Hello @mbbarrett, Welcome to the Mayo Clinic Connect. Sorry you are having to deal with so much that has to do with this illness. 4 surgeries and having your Gallbladder removed is a lot for a person to go through. I do hope things are getting better for you.

I don't remember who mentioned the "lumps" but I will do a little searching and see if I can find out what it was about. When I was experiencing symptoms my belly would swell also. I was also very sick so I basically quit eating then went to rice and cooked oatmeal. I stayed with a bland, soft diet for a while and didn't have any issues. When I would get brave and eat a big meal that was difficult to digest I would get the bloating again. Anyway, diet definitely helped me to a notable degree.

Like you, I had the same feeling that I was not getting anywhere in regard to a knowledgeable diagnosis. I found out, with the help of some members of this forum, that the Mayo Clinic in Rochester had a Doctor and Staff that was familiar with diagnosing this illness. I would also recommend that to you. I know it could be very difficult but before you get to the point of feeling hopeless because you are not getting answers, that is where I would go.

Are the Doctors concerned about the Tumors you have developed?

Best wishes for your good health and try to stay positive no matter how difficult things seem.
@vdouglas

Hi @mbbarrett , I was diagnosed with MP last year. Like @vdouglas , I got to the point of not eating because everything I ate made me feel worse. I was on cooked oatmeal and a small container of Activia. I found a GI doctor in my area that had a few patients with MP. She put me on Meloxicam to help with the inflammation. It took several months for it to work, but helps quite a bit. She started me off on a big dose of prednisone to knock down the inflammation, then the Meloxicam. She said it has fewer side effects than the prednisone.

I still get flare ups when I am not careful with my diet, but the Meloxicam has really helped me. I start taking it every other day or every two days when I start feeling better. For me, diet is everything! Things that I could eat last year, I can't even put in my mouth. If I drink too much water...it goes straight to the edema in the messentary, I have also found that exercise helps too. Especially taking Meloxicam, you need to keep things moving! This is a good place to talk to others that know exactly how you feel! Welcome to the group!

I feel like I'm slowly going crazy... I had a hysterectomy May 9, 2017. By August, I was diagnosed with mesenteric panniculitis that was "accidentally discovered" when I continued having abdominal pain after surgery (my gyno naturally thought it was my ovaries; CT scans done and radiologist found the MP). I was sent to a surgical oncologist that was said to be a "GI guru" and have extensive knowledge in all things "weird and rare". He was rather dismissive about it all as, based on my lab work my gyno had done, there was nothing that made him think there was a concern for cancer. Just brushed it off as an "annoyance issue", that the pain could stay for a month or a year, but he would give me Mobic to help with the inflammation and it should eventually resolve itself (standard treatment for MP is through steroids, but I have anaphylactic reactions to all steroids, and I'm kinda trying to NOT die....). I'm a month in on the Mobic, the flare ups in pain are more frequent with the pain being more and more intense. Nausea has also started to set up and my appetite is waning, at best, as most of the time, the thought of food makes me sick. My PCP and gyno weren't pleased with the consult I had from oncol. One has ordered a repeat CT to be done in a couple of months to monitor progression/improvement. The other has referred me to gastro and hematology. I had a positive ANA and a positive double strand DNA. My spleen has been consistently mildly enlarged on the past few CT's I've had done. Research material on this is limited. I feel like I'm in a snowglobe, being shaken up with all these doctors, throwing around words like "necrosis" and "restricted blood flow" and "cancer" and referral after referral. I'm frustrated and tired of "hurry up and wait".... is there ANYONE that's ever dealt with this that can give me a little insight on it all???

i was wondering,is anyone having skin complications from this disease?I get cold induced panniculitis .Least I think I do...my skin burns from the cold.

At one point I was told that an experience of an extreme extended cold or hot situation may have been what eniateted the disorder. I live in Canada and when I was 8 I was put in a very difficult situation. From then on I have struggled with any amount of cold or hot for any length of time.

Hello @pcfromfm, Welcome on the Mayo Connect. Its always good to hear someone has found the Mayo Connect helpful and informative. That's something we all like to hear because helping each other is what it's all about.

I have been to northwestern Canada, Vancouver area and Victoria Island. It's very beautiful there. Which part are you from?
I believe you mentioned that you had Mesenteric Panniculitis for quite a while. How are you doing with it currently?

@vdouglas

Interesting...I will get reactions from heat too.For the longest time I thought oh this is just winter skin.but it happens in the summer too. I can feel the pain from deep under my skin,then I welt.It is pretty miserable.

Thank you for the welcome @vdouglas.

So far I am pretty discouraged with it all.I went to a GI specialist and the doctor just looked at me and asked what I wanted him to do.
It was crazy....They referred me on to a research facility in Seattle that has not even called me and it has been three weeks.It is good that the first choice isn't necessarily biopsy,though I will do it if that's what they want. Just want to get started here.Thank goodness for this page!

Very interesting. Cold certainly exacerbates my SM symptoms. In the winter, if, for instance, I'm reading and I don't cover up and my abdomen gets very cold ... then my symptoms get much worse. Also, warm heating pads, applied to my abdomen have, in the past, helped with my SM symptoms.

That said, my skin and tissues are very sensitive to heat. Hot beverages are always too hot for me to consume as served. By the time I'm ready to sip my tea, everyone else has finished theirs! I'm sensitive to heat anywhere on my body and burn more easily than others. Sometimes even a warm heating pad, if left on too long, will cause some redness and irritation.

Hi @popy73 -I have had so many strange skin reactions. I went for years not being able to have even shower water hit my skin without welts. But as I age hot and cold generally bothers my skin and my whole being -feeling ill inside and out. Keep moving, keep smiling!