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

The information you’ve received is a little different from what I have learned. My understanding is that the medical community does not know what causes SM. Some think it may be an autoimmune disorder, some think it may be caused by a virus or bacterium, and there used to be a theory that it co existed with cancer but that is no longer a dominant theory. But the consensus of medical sites I’ve seen and my own doctor is that the cause is unknown (hence one of the names, idiopathic sclerosing mesenteritis). So I am not sure you’re atypical.

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Recently I have noticed a vibrating sensation in my chest sometimes it feels like a swooshing sound or a vibrating cell phone this started this month August. I had four stents replaced due to 99% blockage, could one of the tents have moved or erupted? the sensation doesn’t go away, I am in a very stressful situation, I am raising my 10yr old grandson whom has a strong character and very defiant. He
has his grandfathers character, could it just be stress? I personally don’t think so what kind of tests should I have done to find the problem?

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I just got diagnosed with mp last night at er after a ct scan. This pain is beyond horrific. I sent you an email to join the support group. Thank you

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Hello. After 2 terrible days of a fever that would not go away and terrible back and stomach pain I went to the ER. After hours of blood tests, urine tests and a CT scan they diagnosed me with mp. The Dr scared the crap out of me because she said that this disorder a lot of the time it’s common to have lymphoma. But she said don’t worry because my blood tests came up clear. My regular Dr won’t be in until tomorrow. I’m just freaking out. My husband and I have only been married for a year and a half and were starting to try and conceive and I’m scared this will prevent me from getting pregnant. I would love to join the support group if possible. Thanks everyone!

Jen

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Hello,
It is so comforting to find this information. I was diagnosed with mesenteric panniculitis last week. After three bouts ( 5 hours each) of abdominal pain in two weeks I saw my internist who sent me for a CT. I should have gone to the ER, but that’s too long a story. I have now been referred to a local gastroenterologist, but I am not hopeful. Is there anyone in the Boston area that has any knowledge of this? I am a 68 year old female and in relatively good health…or so I thought!
Peg

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Hi all 44 old male living in Weymouth Dorset united kindgom was fairly fit last year running upto 25 miles a week in the gym and all was going fairly well, feb/march this year had debilitating abdominal pains lack of energy and not wantig food feeling sick was admited to hospital for a week got out had loads of blood tests scans follow ups nothing found local gp’s basically didn’t know what to do and dismissed me which made me feel awful, the pain lasted for 6 weeks or so and then came back abbout 17 weeks ago, worse this time though to the point i was hospitalised for 13 days pcb pain fentinol relief, oramorph, tramadol, oycodone loads of pain killers and laxatives laparoscopy perfomed xrays bloods and then a CT which showed wait for it Mesenteric Panniculitis with a secondary diagnosis of diverticulitis left hospital after 13 days on steriods for 8 weeks reducing 5mg per week 8 tramadol a day 8 paracetamol oxycodone 20g twice a day and liquid to top up every 4 hours as well as laxatives, I havent eaten a proper meal in almost 5 months the smell of food makes me want to vomit and am sick if i do eat also get severe pain in the stomach and bowels have been on fortijuice and fortisip liquid drinks for calories and intake as well as yoghurts and energy drinks, have been off of work for 8 weeks and not getting paid, not sure how long the pain is gonna last for, my gastro specialist didnt see me once when i was in hospital.
not sure where to go from here really have been told it’s not cureable and could come and go as it likes,as well as IBS and reflux which i have had for about 12 years i have had testicular cancer 7 years ago and a bladder and prostrate op which has left me partially incontinent and now more so as i have a catheter in as i couldn’t pee when i was in so much pain, not sure when the catheter is due to come out. bowels not good because of the liquid diet and have frequent accidents and this week cotracted a urine infection on top of everything else.

just wanted to say hi to everyone and if anyone has any ideas or comments or questions please feel free to contact me

follow up apointment booked for the 22nd december gastro doctor but any help in the meantime would be very much appreciated as i could do with some answers so i can try and get this under control

kind regards

peter

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@peterhamilton

Hi all 44 old male living in Weymouth Dorset united kindgom was fairly fit last year running upto 25 miles a week in the gym and all was going fairly well, feb/march this year had debilitating abdominal pains lack of energy and not wantig food feeling sick was admited to hospital for a week got out had loads of blood tests scans follow ups nothing found local gp’s basically didn’t know what to do and dismissed me which made me feel awful, the pain lasted for 6 weeks or so and then came back abbout 17 weeks ago, worse this time though to the point i was hospitalised for 13 days pcb pain fentinol relief, oramorph, tramadol, oycodone loads of pain killers and laxatives laparoscopy perfomed xrays bloods and then a CT which showed wait for it Mesenteric Panniculitis with a secondary diagnosis of diverticulitis left hospital after 13 days on steriods for 8 weeks reducing 5mg per week 8 tramadol a day 8 paracetamol oxycodone 20g twice a day and liquid to top up every 4 hours as well as laxatives, I havent eaten a proper meal in almost 5 months the smell of food makes me want to vomit and am sick if i do eat also get severe pain in the stomach and bowels have been on fortijuice and fortisip liquid drinks for calories and intake as well as yoghurts and energy drinks, have been off of work for 8 weeks and not getting paid, not sure how long the pain is gonna last for, my gastro specialist didnt see me once when i was in hospital.
not sure where to go from here really have been told it’s not cureable and could come and go as it likes,as well as IBS and reflux which i have had for about 12 years i have had testicular cancer 7 years ago and a bladder and prostrate op which has left me partially incontinent and now more so as i have a catheter in as i couldn’t pee when i was in so much pain, not sure when the catheter is due to come out. bowels not good because of the liquid diet and have frequent accidents and this week cotracted a urine infection on top of everything else.

just wanted to say hi to everyone and if anyone has any ideas or comments or questions please feel free to contact me

follow up apointment booked for the 22nd december gastro doctor but any help in the meantime would be very much appreciated as i could do with some answers so i can try and get this under control

kind regards

peter

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Welcome to Connect @peterhamilton. I, too, hope that the members participating on this thread can help to get your symptoms under control. @pkrkra, @justjen822 @missyb57 and @lisas444, how are doing? Maybe you have some advice or tips for Peter.

Peter, having to wait until Dec 22 to see a specialists sure sounds like a long wait. What medications and management tips have you been given in the meantime?

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Hi Colleen, Many thanks for your kind words, Nope i was discharged from hospital almost 5 weeks ago with prednisolone starting at 40mg and am now on 15mg a day in 3 weeks time will be down to zero, oxycodone 20mg twice a day 8 tramadol and 8 paracetamol a day plus oxycodone liquid when i get bad pain, on the liquid diet still fortijuice and fortisip and yoghurts and energy drink, still feeling sick all the time with occassional vomiting and still getting pain in the bowels and stomach. havent seen a gastro or nutritionist so no hope there basically discharged and get on with it i guess, I am seeing a GP on friday to let him know im still in pain and not eating as well as fatigued all the time , I was hoping to maybe get some guidence from people on here as to what they have been told and advice for health and management of the condition, also has anyody had any luck claiming benefits from the state as i am unable to work at recent and have lost about $5000 over the last few months not getting paid for being off work which doesnt help the whole situation and adds to the stress .

many thanks take care bye for now Peter

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@camih00

Hi Bill. While you wait for some conversation to build here, I thought I’d share a Mayo Clinic patient story that might be of interest to you: http://www.mayoclinic.org/patientstories/story-441.html

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Great story on Carol. We have a private group as well with 177 members in it all with SM / MP internationally so all your medical, symptoms, meds, etc. aren’t public, etc. and also pairing people up with other’s in their states and/or countries for help with finding docs/facilities to treat SM or MP. Mayo and Dr. Eli at Northshore see the most with SM/MP. 🙂 My name is Lisa Schwart in Tulsa OK on FB if you want to contact me for any more info and adding you over to it! 🙂 Thx! This is a great page as well! 🙂 Lisa

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@peterhamilton

Hi Colleen, Many thanks for your kind words, Nope i was discharged from hospital almost 5 weeks ago with prednisolone starting at 40mg and am now on 15mg a day in 3 weeks time will be down to zero, oxycodone 20mg twice a day 8 tramadol and 8 paracetamol a day plus oxycodone liquid when i get bad pain, on the liquid diet still fortijuice and fortisip and yoghurts and energy drink, still feeling sick all the time with occassional vomiting and still getting pain in the bowels and stomach. havent seen a gastro or nutritionist so no hope there basically discharged and get on with it i guess, I am seeing a GP on friday to let him know im still in pain and not eating as well as fatigued all the time , I was hoping to maybe get some guidence from people on here as to what they have been told and advice for health and management of the condition, also has anyody had any luck claiming benefits from the state as i am unable to work at recent and have lost about $5000 over the last few months not getting paid for being off work which doesnt help the whole situation and adds to the stress .

many thanks take care bye for now Peter

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Hi Peter, really sorry that you’ve had such long bouts of managing on your own between seeing specialists. The financial burden of illness is also a great question to ask for other people experience finding financial help.

@lisa444 @maryscribe can you offer Peter some guidance here on this thread? It will not only help him but also others reading this thread. Thanks

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@lisa444 congratulations on your group and thank you for helping others. Sorry to hear your child has sclerosing mesenteritis too. How old is s/he?

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Thanks Colleen – My daughter was diagnosed with it when she was 14 and she’s now 22. Been a long hard rode with it. Peter, in our group, my daughter has SSI with it on TEFRA when she was still a kid and now with SSI as an adult. We have 2 others in our group of 179 members (I’ve added 14 new people in the past week) who are at Judge’ decision with it, and one other guy in there was awarded with it when he was just 30. He was the 1st we’re aware of – I’m not sure with you just being diagnosed with it – there are a handful of medications which doc’s can use depending on your conversations with them and what your symptoms are. Do you have short term or long term disability with your employer? if so, you may want to apply for it asap. Some are diagnosed with SM or MP and do a short course of treatment and then better. Others will have occasional flare up; others, feel something every day, and are symptomatic every day with it – some are hospitalized frequently with it with bad flare ups, some have had surgeries to remove any masses or if having a bowel obstruction, and some in our group, it’s affected some of the other organs such as the mesenteric artery (2), ureters (a handful or a few more), bladder (a few), kidney (2 in group on Kidney) there are a couple in our group that are tube fed, a couple of others are intravenously fed, a few have ostomies now, and others (3 in our group this past year) have passed with it. Most are in the earlier category, and then there’s the others with pretty aggressive with it.

There are different variants of the disease. 🙂 Some of the meds used to treat SM/MP are as follows: Tamoxifen, Azathioprine, Methotrexate, Colchicine, Prednisone, and in a small handful of cases, Thalidomide, and Remicade has been used in a couple of cases — all with variances of responding to different meds. What has worked for some, doesn’t always work for the others.

Also, you might want to ask your doctors to do an igg4 blood test on you since you are newly diagnosed with it.

I did send you a private message on here 🙂

Lisa

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