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Tue, Apr 30 9:10pm · Mesenteric Panniculitis or Sclerosing Mesenteritis in Digestive Health

Hi kids. Hope everyone is hanging in there. Fresh out of my last hospital stay. Not to sound melodramatic, but I've honestly lost count of how many stays I've had since diagnosed with MP in January. Let's say I've been more in than out. They, of course, don't know what to do other than manage pain and other symptoms. I've shared before that I 'graze' eat to control the nausea. It no longer does, so I'm taking Zofran around the clock. Pisses me off. Suffered a bad bout of pancreatitis, had to be courtesy of MP. I wanted to share that I've been on Protonix, with awesome results. Heartburn is gone. Back on another short round of steroids, but it will end once my PCP has his say. I've graduated to Morphine PO, with Percocet for breakthrough pain, and I resent having to take them them both. I'm waiting on authorization for the cerebral angiogram on my aneurysm (My nice, quiet, killer problem that should take the limelight from the MP, but doesn't.). Ok, I'm done whinning. Try out Protonix, my friends. And hang in there everybody.

Sat, Apr 13 1:29pm · Mesenteric Panniculitis or Sclerosing Mesenteritis in Digestive Health

Hi Di, hope you're hanging in there ok. This is such a cruel condition/disease. It's rarity makes it simply impossible to treat effectively. Due to pre-existing medical conditions, as well as a few brand spanking new ones, my PCP won't prescribe me Prednisone. It's an awful drug, but it does it's job most of the time. However, I'm not convinced it does much for MP. Currently, I'm only being treated for the nasty symptoms of MP. Pepcid, Bentyl, and Percocet. Instead of taking meds for nausea, I graze and tough it out. My current goal is to manage the pain enough to live as normally as possible. I've only been diagnosed since the end of January, but already resent the impact MP has had on my life. I'm holding out hope that I can get into Shands Hospital (a teaching hospital much like the Mayo Clinic) in North Florida soon. My newly discovered brain aneurysm has a recently tried to steal the spotlight from MP, and made me into a pain-in-the-ass patient with a little ticking time bomb in her head. Thankfully, my neurosurgeon understands the importance of getting the MP treated asap. I'm waiting for insurance and the hospital to approve the surgery on my little bomb, as it's so new that it's never been performed in this hospital before. So, I'm hoping to get to Shands for the MP in the interim. I'll gladly share how the specialist there goes about treating MP, once I get there. 😊 You hang in there. And remember, advocate for yourself!

Wed, Apr 10 11:48pm · Mesenteric Panniculitis or Sclerosing Mesenteritis in Digestive Health

Hey everyone. Hoping y'all are all doing well, or at the very least, hanging in there. Another 2 hospital stays under my belt, but can only partially blame MP, at least I think. Important questions to ask everyone. Has anyone else had an issue with malabsorption? Thanks to the constant nausea, which I try to control by grazing (simply snacking throughout the day instead of 3 full meals and really helps) as opposed to taking meds for it, my appetite is rarely there. Some weight loss and bowel movement issues (stools ranging from watery diarrhea to an oily sludge) are common symptoms. My other question, about that which could possibly be related to the malabsorption, is about fainting or blacking out. Anyone else experiencing anything like this? I've had 3 'episodes' of this occurring with an awesome little laundry list of injuries (a concussion, 2 fractured vertebrae, bruised sternum and ribs, and a spectacular black eye, divided up between the 3 'episodes') to draw the doctors' attention away from MP for a bit and focus it on something they can confidently treat, and actually spell. Y'all might even think I'm making it up, as pitifully gloomy as it will sound, but 2nd fall's MRI confirming concussion and checking for any neck injuries, discovered a brain aneurysm. I wish it were just the plot of a sad Lifetime network movie, but it's true. The aneurysm is large enough to be operable, but one who's dimensions won't be easy to fix with a routine clip or coil (because, like MP, I like the complicated, rare shit). All this added fun, and I insist that MP deserves the focus and I beg for it to be addressed first, assuring the doctors that the abdominal pain from it wins out over everything else. So, a novel later (apologies), I'm hoping y'all can help with any similarities you may have experienced with these 'episodes', and malabsorption. Thanks.

Fri, Mar 22 3:50am · Mesenteric Panniculitis or Sclerosing Mesenteritis in Digestive Health

I'm very sorry and hope your health improves. I'm currently back in the hospital, and simply over it. Another CT, 2 ultrasounds, and another MRCP, all show the MP is still present and unchanged. For added fun, I had a blockage in NY small intestine. After a pissing contest between the surgeon and internal med doc, they inserted an NG tube (that's out, thank goodness). Cancer markers in my blood work were mentioned. But that's all, just mentioned. I'm hoping that at Shands, something can be done beyond treating pain. I'm extremely frustrated, but that could be because I'm sick of Jello.

Wed, Mar 13 9:49pm · Mesenteric Panniculitis or Sclerosing Mesenteritis in Digestive Health

On my first ER trip, I was misdiagnosed with a pulled muscle in my back and sent home. An MRI showed no change in the crappy disc issues my neurosurgeon is already well aware of. I had emergency surgery 2 years ago on my back for Cauda Equina Syndrome. A day and a half later, during a tearful phone call to the PA on-call with my neorosurgeons office, I was told to call 911, this is NOT a pulled muscle nor is it your spine. She knew of my AAA last year and was worried about one of the arterial stents migrating and causing the intense abdomin and back pain. That visit's CT showed the MP. First GI was downright cocky about claims to have treated this dozens of times. I didn't need a doctor whose ego was more important than my health. My 2nd GI, bless him, has referred me out for help (No go at Mayo so hoping for Stands or Cleveland clinic) because, in much appreciated candor stated "I don't know how to treat this, so we'll send you to someone who does". I promise you that you know as much about MP, courtesy of this board and Google, as your primary. Keep looking. And hang in there.

Wed, Mar 13 6:59pm · Mesenteric Panniculitis or Sclerosing Mesenteritis in Digestive Health

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.

Wed, Mar 13 7:31am · Mesenteric Panniculitis or Sclerosing Mesenteritis in Digestive Health

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.

Tue, Mar 12 10:54am · Mesenteric Panniculitis or Sclerosing Mesenteritis in Digestive Health

Robin, go to the ER. Go. Any decent ER doc will order another CT scan and certainly help get your pain under control. I've been hospitalized 4 times with MP. You probably know more about MP from Google than your doctor. It's a sad truth. You need a good GI who either has legitimate experience (which is not very likely) or whose ego won't prevent them from referring you to Mayo or a good teaching hospital near you. Fight for yourself. Be your own advocate. Go to the ER, hon.