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

@hopeful33250

@viva and @pcfromfm

Thanks to you both for sharing how you control your symptoms with a very specific diet. It sounds just the way I eat. It takes a little will power, but it is well worth it, isn’t it?

May I ask, how does caffeine affect your symptoms?

Teresa

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Caffeine is difficult at times for me-quite I’m consistent! I do need it for migraines that often accompany systems. They are so difficult I’d take take arsenic if someone told me, in the middle of it, that it would cure a migraine! Not to be flippant-caffeine helps the headache that is extreme for sure. I had a spell when younger that I was without them but they come in clusters now.

REPLY
@fernandoparce

Hello, I have a couple of questions about Mesenteric Panniculitis. I was recently diagnosed with this disease after I was injured in my stomach at work. After about 2 weeks of pain I went in to get a ct scan and this showed up. They have done blood work, exrays and a catscan and it showed no tumors, cyst’s or cancer. I just want to get a better understanding of this disease. I read that it is very rare and there aren’t to many studies on it. So for the people who do have it, it would be very helpful to hear from you all.
1. Can I die from this disease?
2. Is there a special diet I have to follow?
3. Can I have this disease without having cancer?
4. When will the weight loss stop? Will I continue to loose weight until I’m all bones? (I’ve already lost 15 pounds, My brother just passed away from Pancreatic Cancer 3 weeks ago and seeing him suffer like that I’m sure affected my health and weight as well but I just don’t want to end looking frail)
5. Besides Prendisone does anyone know of anything else I can take that would help?
6. Has anyone tried an all natural way of treating it (chemical free) if so what did they use and how effective was it?
Thank You,
Fernando Arce
I look forward to hearing from you.

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I got my wife she help out but by now she’s stressed out doing all the work at home my doctor comes back on the 3rd so I have to ask many ? Now . The only thing that takes my pain away is the prednisone.

REPLY
@fernandoparce

Hello, I have a couple of questions about Mesenteric Panniculitis. I was recently diagnosed with this disease after I was injured in my stomach at work. After about 2 weeks of pain I went in to get a ct scan and this showed up. They have done blood work, exrays and a catscan and it showed no tumors, cyst’s or cancer. I just want to get a better understanding of this disease. I read that it is very rare and there aren’t to many studies on it. So for the people who do have it, it would be very helpful to hear from you all.
1. Can I die from this disease?
2. Is there a special diet I have to follow?
3. Can I have this disease without having cancer?
4. When will the weight loss stop? Will I continue to loose weight until I’m all bones? (I’ve already lost 15 pounds, My brother just passed away from Pancreatic Cancer 3 weeks ago and seeing him suffer like that I’m sure affected my health and weight as well but I just don’t want to end looking frail)
5. Besides Prendisone does anyone know of anything else I can take that would help?
6. Has anyone tried an all natural way of treating it (chemical free) if so what did they use and how effective was it?
Thank You,
Fernando Arce
I look forward to hearing from you.

Jump to this post

@fernandoparce , Merry Christmas. I’m glad you have your wife to help. The disease is difficult for everyone involved but you must try to move forward the best you can. The Prednisone is helping, that is good and encouraging to hear. I hope you are able to eat a little food, nothing spicy.

Best wishes for you
Von. @vdouglas

REPLY
@fernandoparce

Hello, I have a couple of questions about Mesenteric Panniculitis. I was recently diagnosed with this disease after I was injured in my stomach at work. After about 2 weeks of pain I went in to get a ct scan and this showed up. They have done blood work, exrays and a catscan and it showed no tumors, cyst’s or cancer. I just want to get a better understanding of this disease. I read that it is very rare and there aren’t to many studies on it. So for the people who do have it, it would be very helpful to hear from you all.
1. Can I die from this disease?
2. Is there a special diet I have to follow?
3. Can I have this disease without having cancer?
4. When will the weight loss stop? Will I continue to loose weight until I’m all bones? (I’ve already lost 15 pounds, My brother just passed away from Pancreatic Cancer 3 weeks ago and seeing him suffer like that I’m sure affected my health and weight as well but I just don’t want to end looking frail)
5. Besides Prendisone does anyone know of anything else I can take that would help?
6. Has anyone tried an all natural way of treating it (chemical free) if so what did they use and how effective was it?
Thank You,
Fernando Arce
I look forward to hearing from you.

Jump to this post

Hi Fernando,
I’m glad that you have your wife to help. It’s hard when so much falls on our caregiver’s shoulders. I try to do what I can, when I can and I am a ‘half filled glass’ kind of person which helps with keeping positive thoughts in the home…

REPLY
@fernandoparce

Hello, I have a couple of questions about Mesenteric Panniculitis. I was recently diagnosed with this disease after I was injured in my stomach at work. After about 2 weeks of pain I went in to get a ct scan and this showed up. They have done blood work, exrays and a catscan and it showed no tumors, cyst’s or cancer. I just want to get a better understanding of this disease. I read that it is very rare and there aren’t to many studies on it. So for the people who do have it, it would be very helpful to hear from you all.
1. Can I die from this disease?
2. Is there a special diet I have to follow?
3. Can I have this disease without having cancer?
4. When will the weight loss stop? Will I continue to loose weight until I’m all bones? (I’ve already lost 15 pounds, My brother just passed away from Pancreatic Cancer 3 weeks ago and seeing him suffer like that I’m sure affected my health and weight as well but I just don’t want to end looking frail)
5. Besides Prendisone does anyone know of anything else I can take that would help?
6. Has anyone tried an all natural way of treating it (chemical free) if so what did they use and how effective was it?
Thank You,
Fernando Arce
I look forward to hearing from you.

Jump to this post

Hello:
Who is Fernando?????
You seem to have your accounts mixed up.
Thank You,

REPLY
@fernandoparce

Hello, I have a couple of questions about Mesenteric Panniculitis. I was recently diagnosed with this disease after I was injured in my stomach at work. After about 2 weeks of pain I went in to get a ct scan and this showed up. They have done blood work, exrays and a catscan and it showed no tumors, cyst’s or cancer. I just want to get a better understanding of this disease. I read that it is very rare and there aren’t to many studies on it. So for the people who do have it, it would be very helpful to hear from you all.
1. Can I die from this disease?
2. Is there a special diet I have to follow?
3. Can I have this disease without having cancer?
4. When will the weight loss stop? Will I continue to loose weight until I’m all bones? (I’ve already lost 15 pounds, My brother just passed away from Pancreatic Cancer 3 weeks ago and seeing him suffer like that I’m sure affected my health and weight as well but I just don’t want to end looking frail)
5. Besides Prendisone does anyone know of anything else I can take that would help?
6. Has anyone tried an all natural way of treating it (chemical free) if so what did they use and how effective was it?
Thank You,
Fernando Arce
I look forward to hearing from you.

Jump to this post

Welcome to Connect, nowbusiness123.
Fernando is another member who is participating in this discussion about Mesenteric Panniculitis and Sclerosing Mesenteritis. Because you are following this discussion, you will get an email notification each time a new post is made to the group discussion. In the message to which you replied, Lisa was responding to a message that Fernando posted.

To see the full discussion and the group conversation, click VIEW & REPLY at the bottom of the email. To learn more about following groups and discussions, and how to Connect works, please see this How to Get Started guide https://connect.mayoclinic.org/get-started-on-connect/

We look forward to getting to know you NowBusiness123. Do you have Mesenteric Panniculitis or Sclerosing Mesenteritis or another digestive issue that you’d like to talk about?

REPLY
@fernandoparce

Hello, I have a couple of questions about Mesenteric Panniculitis. I was recently diagnosed with this disease after I was injured in my stomach at work. After about 2 weeks of pain I went in to get a ct scan and this showed up. They have done blood work, exrays and a catscan and it showed no tumors, cyst’s or cancer. I just want to get a better understanding of this disease. I read that it is very rare and there aren’t to many studies on it. So for the people who do have it, it would be very helpful to hear from you all.
1. Can I die from this disease?
2. Is there a special diet I have to follow?
3. Can I have this disease without having cancer?
4. When will the weight loss stop? Will I continue to loose weight until I’m all bones? (I’ve already lost 15 pounds, My brother just passed away from Pancreatic Cancer 3 weeks ago and seeing him suffer like that I’m sure affected my health and weight as well but I just don’t want to end looking frail)
5. Besides Prendisone does anyone know of anything else I can take that would help?
6. Has anyone tried an all natural way of treating it (chemical free) if so what did they use and how effective was it?
Thank You,
Fernando Arce
I look forward to hearing from you.

Jump to this post

Good morning @nowbusiness123 ,

Your reference is to an individual that is a member of our Digestive Health, Mesenteric Panniculitis or Sclerosing Mesenteritis group.
How are you today?

@vdouglas
Von

REPLY
@fernandoparce

Hello, I have a couple of questions about Mesenteric Panniculitis. I was recently diagnosed with this disease after I was injured in my stomach at work. After about 2 weeks of pain I went in to get a ct scan and this showed up. They have done blood work, exrays and a catscan and it showed no tumors, cyst’s or cancer. I just want to get a better understanding of this disease. I read that it is very rare and there aren’t to many studies on it. So for the people who do have it, it would be very helpful to hear from you all.
1. Can I die from this disease?
2. Is there a special diet I have to follow?
3. Can I have this disease without having cancer?
4. When will the weight loss stop? Will I continue to loose weight until I’m all bones? (I’ve already lost 15 pounds, My brother just passed away from Pancreatic Cancer 3 weeks ago and seeing him suffer like that I’m sure affected my health and weight as well but I just don’t want to end looking frail)
5. Besides Prendisone does anyone know of anything else I can take that would help?
6. Has anyone tried an all natural way of treating it (chemical free) if so what did they use and how effective was it?
Thank You,
Fernando Arce
I look forward to hearing from you.

Jump to this post

Still losing my appetite now my neck is hurting can somebody tell me what else to expect from this disease

REPLY
@fernandoparce

Hello, I have a couple of questions about Mesenteric Panniculitis. I was recently diagnosed with this disease after I was injured in my stomach at work. After about 2 weeks of pain I went in to get a ct scan and this showed up. They have done blood work, exrays and a catscan and it showed no tumors, cyst’s or cancer. I just want to get a better understanding of this disease. I read that it is very rare and there aren’t to many studies on it. So for the people who do have it, it would be very helpful to hear from you all.
1. Can I die from this disease?
2. Is there a special diet I have to follow?
3. Can I have this disease without having cancer?
4. When will the weight loss stop? Will I continue to loose weight until I’m all bones? (I’ve already lost 15 pounds, My brother just passed away from Pancreatic Cancer 3 weeks ago and seeing him suffer like that I’m sure affected my health and weight as well but I just don’t want to end looking frail)
5. Besides Prendisone does anyone know of anything else I can take that would help?
6. Has anyone tried an all natural way of treating it (chemical free) if so what did they use and how effective was it?
Thank You,
Fernando Arce
I look forward to hearing from you.

Jump to this post

Good morning everyone!
I hope everyone had nice Christmas and excellent Boxing Day shopping! I was wondering if anyone has heard about the benefits of infrared saunas (even portable, more reasonably priced ones)? I have read that it can be good for patients with chronic illness and pain as well as flushing out stored toxins from medications….just wondering….is it too good to be true???

REPLY
@fernandoparce

Hello, I have a couple of questions about Mesenteric Panniculitis. I was recently diagnosed with this disease after I was injured in my stomach at work. After about 2 weeks of pain I went in to get a ct scan and this showed up. They have done blood work, exrays and a catscan and it showed no tumors, cyst’s or cancer. I just want to get a better understanding of this disease. I read that it is very rare and there aren’t to many studies on it. So for the people who do have it, it would be very helpful to hear from you all.
1. Can I die from this disease?
2. Is there a special diet I have to follow?
3. Can I have this disease without having cancer?
4. When will the weight loss stop? Will I continue to loose weight until I’m all bones? (I’ve already lost 15 pounds, My brother just passed away from Pancreatic Cancer 3 weeks ago and seeing him suffer like that I’m sure affected my health and weight as well but I just don’t want to end looking frail)
5. Besides Prendisone does anyone know of anything else I can take that would help?
6. Has anyone tried an all natural way of treating it (chemical free) if so what did they use and how effective was it?
Thank You,
Fernando Arce
I look forward to hearing from you.

Jump to this post

Hi @fernandoparce,

I can imagine how worried you must be, and I want to thank you for reaching out to the Connect community. Living with a chronic condition can be so difficult and frustrating. Here is some information about Sclerosing mesenteritis care at Mayo Clinic, which I would encourage you to read:
https://www.mayoclinic.org/diseases-conditions/sclerosing-mesenteritis/care-at-mayo-clinic/mac-2035509vdouglas

Thank you, @kimh, for your question about the benefits of infrared sauna therapy for chronic health conditions; here is Mayo Clinic’s take on it: https://www.mayoclinic.org/healthy-lifestyle/consumer-health/expert-answers/infrared-sauna/faq-20057954

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!!!!!!

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Hi Lisa, I was diagnosed with MP 10 years ago, has recently come back. I tried to find your facebook page but was unable to. I have a ton of questions and don’t know where to begin. Cindy Connors

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

Welcome to Connect, Lisa @cconnors. Let me introduce you to @vdouglas @pcfromfm @kimh @bertbiz and others here that have also been living with MP and who would be happy to answer your questions. You say you were diagnosed 10 years ago. How are you doing today?

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

I was diagnosed 10 years ago when I had recurrent stomach pain. A CT was done and showed MP. My surgeon did a biopsy. I also was told that I had some sort of non-cancerous tumor. I went for a 6 month recheck and the tumor was gone. For the past two years I have had a lot of upper abdominal pain and nausea. My GI did an endoscopy and said that it was GERD. I went to the ER in May for the pain, they did a CT scan and it again showed MP. I went again two weeks ago. Another CT was done and showed mild MP. I followed up with my GI and he wants to do a colonoscopy and endoscopy to make sure that he isn’t missing anything. I was put on 40mg of prednisone with a taper. When that is done he prescribed azathioprine. Before taking such a heavy duty medication I wanted to do more research.
1. If MP can be caused my different cancers, and other things, how are these ruled out?
2. Who do I see about ruling out other underlying conditions.
3. Has anyone else ever heard about taking this medication for MP.
I asked what would happen if I chose no medication. He said that living with inflammation of the MP could actually cause cancer. I feel like I am being forced to choose between the two evils. Possible cancer if I do nothing and possible cancer from taking this immune suppressing medication. I read posts of people choosing to be seen at the Mayo. Does their insurance usually cover out of network?
Sorry for so many questions! I’m finding this a little overwhelming and don’t know what the first step should be.
Thanks!

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

Hi @cconnors,

Thank you so much for sharing your history; absolutely no need to apologize for the questions! This is what the Connect Community is all about: talking with people who have similar experiences, asking questions, and getting support from members who understand what you are going through.

While we wait for other members to join in, here’s some information about mesenteric panniculitis care at Mayo Clinic, which might help answer some of your concerns:
https://www.mayoclinic.org/diseases-conditions/sclerosing-mesenteritis/care-at-mayo-clinic/mac-20355090
@danrofohio @kimh have also written about azathioprine and I’m confident they will return to share their insights.

If it gives you any reassurance, I’d like to mention that Mayo Clinic in Minnesota has been recognized as the best Gastroenterology & GI Surgery hospital in the nation for 2017-2018 by U.S. News & World Report.
If you would like to make an appointment at Mayo Clinic, please call one of our appointment offices. You can also request an appointment online. The contact information for Minnesota, Arizona and Florida can be found here: http://www.mayoclinic.org/appointments

With regard to insurance, might I suggest you call Mayo Clinic’s Patient Account Services at 800-660-4582
For further information, also check out this resource about Mayo Clinic billing and insurance: https://www.mayoclinic.org/patient-visitor-guide/billing-insurance

Liked by kimh

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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!!!!!!

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Hi again @cconnors,

I forgot to mention the Gastroenterology & GI Surgery Page on Connect (https://connect.mayoclinic.org/page/gastroenterology-and-gi-surgery/) which has a great video/discussion, by Mayo Clinic gastroenterologist, Dr. Kisiel:
https://connect.mayoclinic.org/newsfeed-post/the-risk-of-cancer-from-certain-ibd-medications-1/
Dr. Kisiel talks about the pros and cons of drugs like azathioprine, and the benefits and risks of taking such immunosuppressants. I hope this helps alleviate some of your concerns.

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