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

Can MP cause inflammation in other places besides you abdomen and colon area? Can MP make GERD or acid reflex worse?

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@poppy73

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.

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Trial, elimination and error have proven successful over a long period! No corn or onions in any form, (which means no processed foods) nothing spicy, no seafood or fish, mustard, pumpkin or milk. No additives or preservatives or chemical flavourings/sweeteners. Other foods periodically bother me but those are the big ones. Pretty basic eating. I don’t eat out often!! But I still manage to upset this system daily! Life in moderation is the rule! I eat gravol a great deal-never leave home without it! Lol
Fishing is great, hunting as well! Summer is short. This year we have Fall-some years there’s a day between summer and winter! All good-LOVE living here!! And you @vdouglas what about what diet works for you?

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@poppy73

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.

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Eating small portions as it seems to take much longer for my food to digest and could cause an uncomfortable evening of bloating and intestinal distress the following day. I try to stay away from spicy as well and no onions especially raw. Raw onions will cause distress almost for certain. Although I am asymptomatic I can have pain and other issues just like anyone else. It’s just not going to send me to the doctor or ER. Eating food that keeps me regular is most important.
I also agree with your earlier comment regarding reducing stress. I find stress causes me to tighten up especially in the belly. This causes a change in breathing and digestion. I usually feel the best in the mornings when I’m more relaxed then have more difficulty in the evenings when I’m tired and stressed. Fishing is great for reducing stress. I love to fish a creek
I have never tried Gravol which is Dramamine in the US? Do you use it for nausea/upset stomach?
.

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@carbxbe8206

Can MP cause inflammation in other places besides you abdomen and colon area? Can MP make GERD or acid reflex worse?

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Hello @carbxbe8206, Welcome back!.
I am sure, not professionally, that MP can make GERD or reflux worse. MP adds stress to your body physically, mentally and emotionally. I have reflux and use Omeprazole on occasion to resolve it.

I have had pain in the back, flank area under the right rib and the same on the left side. The pain will move around to the belly area and the lower belly area. I have had these pains both mild and so sever as to cause nausea and vomiting even with pain medication. I have read a lot of cases where MP was found after an individual went to ER for flank pain.

The inflammation can cause lymph nodes to swell and I suppose that could also cause pain elsewhere. Please see signs and symptoms in this link, https://rarediseases.org/rare-diseases/mesenteric-panniculitis/

How are you doing lately?

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Hi there, for those that know me, I stress the fact that I have had gerd for 11 years (and still MP), but I cured my gerd with supplements and diet. Just look up Chris Kresser and see his suggestions for supplements and diet. I can now drink coffee, eat acidic food, and not get gerd. Pretty crazy given I was taking proton pump inhibitors for years and 600 mg of Zantac daily. Diet (autoimmune protocol) really helps me with bloat. Good luck.

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@carbxbe8206

Can MP cause inflammation in other places besides you abdomen and colon area? Can MP make GERD or acid reflex worse?

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Douglas, Thank you for the response trying to get into my GI doctor. The last few day have been very rough for me severe nerve pain all over and digestive issues. Can’t take steroids afraid they will activate my Valley Fever, maybe I will have to make a choice on which is worse? I seem to contact all the rare crazy diseases. Taking one day at a time, and keeping a positive outlook. Have been going to Stanford Medical may have to switch to Mayo if my insurance will cover it? Have a great night!

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Doran,
Thanks for the information I will check into that after my GI appointment.

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@poppy73

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.

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Morning @vdouglas! Gravol is Dimenhydrinate in 100mg tablets. I need to take it with just a hint of not feeling well-just over the counter here in Canada. Also use migraine meds Montelukast and Sumatriptan because headaches turn into full blown problems very quickly. I agree with you-best in the am and as the day moves on I slow down. I was a Teacher working with the most difficult and -even though I loved it all-it was extremely taxing. I have much less stress now retired! But like most teachers I still fill my day quickly with volunteer work and fun stuff! I try to juggle the balance between challenges and quietness! I try not to extend commitments into evenings. Keep enjoying your fishing!! That pic is from my front deck-I use Nsture as a crutch most days!☺️Travelling when it’s very cold helps still. (And it can be -50 here in Dec/Jan!) Do others in your family have auto immune issues?

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@poppy73

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.

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Morning @pcfromfm, I can smell the morning breeze from your porch coming over the river that flows north.
It’s a good persons that does volunteer work, I commend you for that, we need more like you in the world. You have a great balance in your life that is working well for you. It is an inspiration to each of us trying to find that balance. I am an adventurous type but I don’t know if I am tough enough for -50 celcius? ow! The folks in Minnesota can relate to the cold but Las Vegas only get down to about 26 F maximum.
Keep us posted, there are others in the background reading your comments, they are inspirational.
Your response to some of the others has been good, I’m sure they benefit from them as I do.
@vdouglas

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@carbxbe8206

Can MP cause inflammation in other places besides you abdomen and colon area? Can MP make GERD or acid reflex worse?

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Hello @carbxbe8206, sorry this took so long. I had a response typed out then opened another page and lost it all, Yikes!!
I can really sense your pain and frustration in your comments. Please have hope that the days to come will be better. Yes you do need to see your GI so that you may receive some relief from your symptoms.

I was given Naproxen along with Hydrocodone when I was experiencing bad symptoms of pain. When the hydrocodone ran out they would only prescribe Naproxen without a visit which I couldn’t get for months. I kind of laughed at being prescribed what I considered Aspirin but it actually seemed to work after a couple of days. I believe the anti inflammatory properties are what helped. I would only recommend taking it with a doctors prescription and supervision as it does have some side effects. If you are currently using an Opioid pain med keep in mind it can cause bowel issues. I have not have not heard anyone mention this but although great for surviving pain Opioids will, over time, cause bowel issues which will cause pain in your intestines. There has to be some balance to overcome this, possibly with diet but certainly a GI doctor should be able to address it.

If you make it to the Mayo, and I understand all the obstacles, it will be worth the trouble and expense. You need to know which illness is causing the symptoms. They will be able to determine the progression of the MP. They have seen many images and know how to interpret them. Although treatment is limited at least you will know where to go from that point. They will send your GI a letter describing their findings and what to expect. You are not required to have a referral but it would be best to have one.

I would be glad to guide you through this if you decide to go.
You will be included in my Prayers
@vdouglas

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@carbxbe8206

Doran,
Thanks for the information I will check into that after my GI appointment.

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Hope you feel better!! Keep us posted please.

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First of all, MANY thanks to @vdouglas, for finding my original post in the auto immune forum here on TMC connect site. I’m so relieved (as morbid as that is to say) to see that I really am NOT alone…. I’ll preface by saying there is a very real possibility I may rely heavily on everyone’s experiences through this in this forum.

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”….

What’s your insight on what I’m looking at long term?? I’ve never had anything chronically, so I’m lost on what to expect. My PCP is very literally clueless. The “GI guru” has, in effect, blown me off – I called seeking helping when the Mobic failed to work. All I’ve gotten was a text message from the pharmacy saying my Rx was ready (apparently, he just called in something new without talking with me about what I had going on). Today, I got a call from his office saying they were going to refer me to a gastro but saw that I was already scheduled and wished me best of luck. Still have not spoken to him. Glad my intestinal tract hasn’t shriveled up and fallen out waiting for him to get back with me (sarcasm).

Hit me with whatever info you’ve got. Books. Articles. Suggestions on diet modifications. Meds you’ve tried that were successful. Anyone tried anything holistically? I am desperately wanting to “get in front of the ball” as best I can – the bad days are BAD. I have two kids to raise, one 16 and one 6. Mommy doesn’t have time for debilitating…..

Bless every one of you all!!!!!!! Sending everyone lots of hugs and support from Kentucky!!!!!!

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@carbxbe8206

Can MP cause inflammation in other places besides you abdomen and colon area? Can MP make GERD or acid reflex worse?

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Douglas, Thank you for all your answers and offer to help guide me. Today has been a little better for me, I also appreciate your prayers. I tried Hydrocodone but didn’t like the side effects, my son and his wife are nurses and say to stay away from it long term if possible. I currently take Tramadol as needed for pain it doesn’t work as well as Hydrocodone but makes it manageable without some many side effects. Have a great weekend!

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@carbxbe8206

Can MP cause inflammation in other places besides you abdomen and colon area? Can MP make GERD or acid reflex worse?

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@carbxbe8206 – I agree. I am using Tramadol 50mg as needed for pain. My doctor has given approval to take it with Tylenol for a little better results.

Liked by Poppy73

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@carbxbe8206

Can MP cause inflammation in other places besides you abdomen and colon area? Can MP make GERD or acid reflex worse?

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Hi @carbxbe8206 – Do you know why they say to stay away from Hydrocodone long term? I’ve been taking Symax Duotab (extended release hydrocodone) nightly for about two years now. It is the only thing that allows me to sleep well through the night. My doctors have so far said that if it is working for me, then I should continue taking it. The only side effect I experience is blurry vision, which is an annoyance, but nothing serious.

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