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

Interested in more discussions like this? Go to the Digestive Health group.

@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.

REPLY

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?

Jump to this post

@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.

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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?

Jump to this post

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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@carbxbe8206

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

Jump to this post

David, Not sure we are talking about the same thing, I have never heard of Symax Duotab hydrocodone,I have heard of Symax Duotab Hyoscyamine. Hydrocodone is an opioid pain killer, Hyoscyamine is to treat GI issues? My son has said the same, he also said they do make an extended release hydrocodone but it is called Hysingla ER. Anyway my son said hydrocodone is addictive, long term use could cause organ damage, along with withdrawal symptoms, and don’t use with breathing problems. Also causes Hard stools (constipation). Your doctors know best, it just wasn’t for me. Glad you found something that works for you.

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@tarad

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!!!!!!

Jump to this post

My doctor put me on Mobic last year (meloxicam). It took about 6 weeks before it gave me some relief. I can now take it every other day most of the time. It has really been a tremendous help to keep the inflammation down. I make sure I take it with a meal because I bleed easily from by stomach. It also helps with the pain. I still get swollen and uncomfortable during a flare, but it helps bring things back down in a reasonable amount of time. This is such a frustrating disease! This is a great group of people that completely understand what you’re going through! Managing my diet and taking my meloxicam regularly has really helped improve my quality of life.

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Denia, Good to know, want to check with GI doctor about this drug because I can’t steroids. Do you have GERD, acid reflex issues, was wondering if this med with make these issues worse? Thanks for the information.

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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?

Jump to this post

Hi @carbxbe8206, Sorry, you are right. I am thinking of hyoscyamine. I blame fuzzy brain this week. 🙂 Best.

REPLY
@carbxbe8206

Denia, Good to know, want to check with GI doctor about this drug because I can’t steroids. Do you have GERD, acid reflex issues, was wondering if this med with make these issues worse? Thanks for the information.

Jump to this post

I don’t have too many issues with reflux or GERD. I had a big dose of steroid for about 10 days before I started the Mobic. Then, I only took the Mobic. I was about to give up on it when it started reducing the inflammation. I had a lot of inflammation and I think it just took time to get things calmed down. Plus, I will still trying to figure out my diet, so that probably had something to do with the length of time it took to give me some relief.

REPLY
@tarad

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!!!!!!

Jump to this post

@denia, thank you for the insight. Mobic is just hit and miss with me. I hate not being able to take steroids. It’s VERY frustrating. I’m so beyond grateful to have found this group. I’m grateful to have people to lean on and help each other through this!

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