Mesenteric Panniculitis or Sclerosing Mesenteritis

Great

Kim, the similarities between our cases is glaring. In my own research, I'd come to the conclusion that my MP comes from abdominal surgeries. In my lifetime, I've had 2 C-sections, hystectomy, oopherectomy, gall bladder, EVAR (after a AAA), and 3 hematoma evacuations. The last 4 of which were just last year. Though no doctor bothered to make the correlation, I did. I am big on blame. But, after reading your comments, I have to wonder about my back's role in this. January of 2017, I had emergency surgery on my back because I had developed Cause Equina Syndrome, also rare. Apparently, I like to get the rarest problems. Although, with MP, I just look like an overachiever. 🙂 I'm interested to hear more about your back, when and if you don't mind, hon.

Hello @dementorshoes ! Yes, I have also had hysterectomy, oopherectomy and gall bladder surgery; not to mention surgical biopsy for diagnosis for MP! But, to be honest, I never felt that I had a problem with MP until two weeks after a nasty slip and fall on black ice (March 19, 2014....close to 5 year anniversary!!!). Two weeks to the day of the fall, I began experiencing symptoms, which my husband and the local clinic suspected that perhaps I had kidney stones that may have been shattered from the fall. The next morning, I was called back in to the clinic for an ultrasound and that is when some eyebrows were raised. I was then sent to the hospital downtown for a ct scan. The doctor did a physical abdominal exam (why do they do that???? It brings me to tears every time!) and asked if I was a smoker. I knew that was a 'cancer' question. When I told him that I am not, he just went, 'hmmmmm' and I thought, 'what the he**!!! I don't think this disease is brought on by smoking, but at that time they were juggling with the notion that either I had MP or lymphoma. I ended up in and out of emergency for pain management until I was just admitted. I had to ct's done in that time and my inflammations had grown over that six day period and that's when schedules were cleared and they did an emergency endoscopy and colonoscopy the next day and the day after that an emergency surgical biopsy which all came back positive for MP. After a massive 5 month dose of prednisone, I began experiencing esophageal spasms and was hospitalised for another 10 days to get things under control. I went into remission for two years. I actually began to forget that I actually had this disease, but August 2017, it reared it's ugly head. It was a very stressful and heartbreaking time for me (my dad suddenly came down with cancer while I was working full time and planning my first son's wedding!) and I have been battling it ever since. Today has been a rough day for me and I have seen that weather has been a factor in pain levels! That's a problem for someone living in this climate (Canada!). I am hoping that the azathioprine (200 mg. daily), tamoxifen (20 mg. daily), prednisone (4 mg. daily) and CBD oil might be the right 'cocktail' for me! I'm honestly sick and tired of beginning my day with so much medication, but I suppose if it helps, I shouldn't complain. I now have severe osteoporosis, which I think, in part can be attributed to the prolonged prednisone use. At least that's a shot once every 6 months, rather than a daily pill! Sorry for the novel...

Oh, and big on blame?? The caretaker that was supposed to spread salt on the ice that day (I had specifically asked her to do this and there were 8 large bags just sitting in the boiler room) has never been disciplined or even bothered to apologise to me. I wasn't the only one who fell. There were nine people that slipped and fell that day due to her negligence, but of course, I was the lucky one and won the MP prize lol......

What are your symptoms?
I went to 2 gi drs and they both say conflicting things.

The doctor today that right back pain can't be part of any stomach issue!!!

Hi Robinbeth6-mine, at its worst, can be like “back labor.” So -

I love that someone, besides myself, compared the pain to back labor. I can, without hesitation, say that MP pain is the worst pain I've ever had. And pain and I are very close, old friends. At it's worst, which thank God doesn't last long although it is frequent, it hits an easy 10 on the pain scale. I resent having to take medicine, but have accepted it's necessity. I really resent asking for pain meds, especially because only the strongest of narcotics seems to work on the pain from MP. Thankfully, doctors are quite understanding and sympathetic to this, though pharmacists eye me suspiciously with judgemental expressions on their faces (it doesn't help that I'm covered in tattoos, albeit harmless ones of Harry Potter and Star Wars). I believe docs are so accommodating because managing pain is truly all most can do for us. Getting that aspect of MP handled is vital so you can focus on getting the help you need. I've just learned my 2nd GI's referral to Mayo is useless as they don't accept my insurance, and my millions are tied up in the Florida swamp land real estate market. 😐 Sense of humor doesn't hurt, either. I particularly liked Robin's reference to her MP anniversary and reward.

Sounds like we have lots in common Dementorshoes! I’ve just jumped in here but it is good to hear of any similarities between us who share this crazy disease. Thank you for sharing.

Hah! My pain started in my right kidney area. He can check the results of 5 different ct scans and the report from a surgical biopsy! Get a new doctor!