Chronic pancreatitis, mesenteric panniculitis... and more?

Posted by sallycinnamon @sallycinnamon, Sep 10 1:33pm

Hello! My name is Sally, I live in Boston, and I come to you for some guidance! I have been chronically ill for 20 years, but the last 18 months have been the worst.

In 2000 I had pancreatitis due to gallstones. They removed my gallbladder, and told me to be on a low fat diet and no alcohol going forward. I am very much a follower of doctor's orders, and still follow til this day! I also work out 3x a week, and have so for as long as I can remember. For the next ten years I never really felt right, and no doctor could put a finger on it. Fast forward to 2010… I was admitted to the hospital with a pancreas the size of a grapefruit. I was in a massive attack of pancreatitis. Over the years this has now become chronic. Since then, extreme pain in my upper abdomen (right where my bra hits on the bottom) is an every day occurrence.

The summer of 2019 I started to feel sick again. Constipation, diarrhea, bloody diarrhea, weeks of lost blood… and nausea and vomiting. Now it is at the point where the nausea and vomiting are daily. Usually in the morning. Sometimes I can be laying in bed and just start to vomit on myself. And the pain… I have been in the ER more times than I can count simply to get pain management and fluids from the vomiting.

Winter of 2020 I was admitted to the hospital for four nights with mesenteric panniculitis. What led me there was pain and vomiting 10x more than my usual daily routine. The MP was found by a CT Scan.

I've had everything you can think of done to me- colonoscopies, endoscopies, gastric emptying studies, pills to help with this and that before I eat, pancreatic enzymes. Nothing has helped. I have been an absolute hound dog trying to find an answer for myself.

My GI suggested I see a gastro surgeon. Last week I had an MRI and it showed that I had a redundant colon, and some feces that appeared to be impacted. My mother, and my two twin uncles have had issues with blockages as they have gotten older. Maybe it's this? I have no idea.

I am reaching out to this group to see if anyone has any ideas, or leads that I can chase! I am desperate for help. Thank you for taking the time to read my story!

Liked by mmr33

Hi @sallycinnamon and welcome to Mayo Clinic Connect. Thank you for sharing your story. It sounds like you have been going through a very rough time for the last 20 years. I can personally sympathize with you as I went a very long time without a diagnosis for abdominal pain as well. It can be very overwhelming to wake up and not have answers and be in such discomfort.

I'd like to invite @gaylea1, @2011panc, @patowen1 @ashley112689, @mkirby19 @marvinjsturing, @shayshay, @ab1989, @carcar @mel1987 @cat4cards @giango87and @kimh to the conversation to discuss problems with the pancreas, mesenteric panniculitis, redundant colon and gall bladder issues.

Sally, do you or your physician believe that your symptoms are not caused by the mesenteric panniculitis, which include abdominal pain, nausea/vomiting, bloating, early satiety, loss of appetite and diarrhea and constipation?

Liked by mmr33

REPLY

Hello Amanda! Thank you so much for replying! The power of the internet!

The original doctor who diagnosed me with the MP was the doctor on duty at the hospital that I was admitted to. My GI, and my other doctors seem to think that the MP was not such a severe case that it would keep on like this, and respond with the severe symptoms. But, they all admit that MP is so rare that they don't really know for sure. I feel like I have had to be my own advocate and detective in one. It's incredibly frustrating!

The doctors have no idea why I have the panniculitis. My father has pancreatitis, and has battled ulcers his entire life. So between that and my mother's issues (I wrote of above) there are a lot of genetics that are not on my side! I really want to know my "real" diagnosis, and what I can do to help.

Thank you in advance to everyone!

Liked by mmr33

REPLY

@sallycinnamon Hello and welcome. I had to look up mesenteric panniculitis and redundant colon. Mesenteric panniculitis sounds like my "gut" issues, although I have never been given that diagnoses. I don't know that anything in my treatment would change. I have not (thankfully) had the vomiting that you are experiencing. What is working best for me is to eat small amounts frequently, making sure to eat foods with good nutritional value, and drink lots of water. I have a minimum of 80 fluid ounces a day, including up to 8 ounces of coffee a day. I occasionally have a soda or alcoholic drink, but mostly water. I hope you find relief soon, You certainly are going through a difficult time.

Liked by sallycinnamon

REPLY
@2011panc

@sallycinnamon Hello and welcome. I had to look up mesenteric panniculitis and redundant colon. Mesenteric panniculitis sounds like my "gut" issues, although I have never been given that diagnoses. I don't know that anything in my treatment would change. I have not (thankfully) had the vomiting that you are experiencing. What is working best for me is to eat small amounts frequently, making sure to eat foods with good nutritional value, and drink lots of water. I have a minimum of 80 fluid ounces a day, including up to 8 ounces of coffee a day. I occasionally have a soda or alcoholic drink, but mostly water. I hope you find relief soon, You certainly are going through a difficult time.

Jump to this post

Thank you @2011panc! It helps to know that there is a community that cares. I definitely have to up my water intake. I drink A LOT of Dunkin Donuts iced coffee, and Polar Seltzer like a good New England girl! But plain old water goes by the wayside. I am really going to make an effort to do so. Thanks!

REPLY
@sallycinnamon

Thank you @2011panc! It helps to know that there is a community that cares. I definitely have to up my water intake. I drink A LOT of Dunkin Donuts iced coffee, and Polar Seltzer like a good New England girl! But plain old water goes by the wayside. I am really going to make an effort to do so. Thanks!

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Hi @sallycinnamon, you may also be interested in these related discussions on Connect:
– Pancreatitis? https://connect.mayoclinic.org/discussion/pancreatitus-1/
– Mesenteric Panniculitis or Sclerosing Mesenteritis https://connect.mayoclinic.org/discussion/mesenteric-panniculitis-or-schlerosing-mesentertis-auto-immune-around-small-intestine/
– Redundant / Tortuous Colon https://connect.mayoclinic.org/discussion/redundant-tortured-colon/

I whole-heartedly agree with @2011panc. Water really is best. Do you eat small amounts throughout the day rather than full meals?

REPLY
@amandaburnett

Hi @sallycinnamon and welcome to Mayo Clinic Connect. Thank you for sharing your story. It sounds like you have been going through a very rough time for the last 20 years. I can personally sympathize with you as I went a very long time without a diagnosis for abdominal pain as well. It can be very overwhelming to wake up and not have answers and be in such discomfort.

I'd like to invite @gaylea1, @2011panc, @patowen1 @ashley112689, @mkirby19 @marvinjsturing, @shayshay, @ab1989, @carcar @mel1987 @cat4cards @giango87and @kimh to the conversation to discuss problems with the pancreas, mesenteric panniculitis, redundant colon and gall bladder issues.

Sally, do you or your physician believe that your symptoms are not caused by the mesenteric panniculitis, which include abdominal pain, nausea/vomiting, bloating, early satiety, loss of appetite and diarrhea and constipation?

Jump to this post

I was diagnosed with MP in May 2020. Please add me to your conversation. MMR33

REPLY
@sallycinnamon

Hello Amanda! Thank you so much for replying! The power of the internet!

The original doctor who diagnosed me with the MP was the doctor on duty at the hospital that I was admitted to. My GI, and my other doctors seem to think that the MP was not such a severe case that it would keep on like this, and respond with the severe symptoms. But, they all admit that MP is so rare that they don't really know for sure. I feel like I have had to be my own advocate and detective in one. It's incredibly frustrating!

The doctors have no idea why I have the panniculitis. My father has pancreatitis, and has battled ulcers his entire life. So between that and my mother's issues (I wrote of above) there are a lot of genetics that are not on my side! I really want to know my "real" diagnosis, and what I can do to help.

Thank you in advance to everyone!

Jump to this post

My father died at age 63 of a lyo myo sarcoma of the small intestine. Also extremely rare. I developed MP this past Spring (2020) and have been working with my Mayo physician to find the right combination of meds to treat it. I will be 58-yrs-old on October 12.

REPLY
@2011panc

@sallycinnamon Hello and welcome. I had to look up mesenteric panniculitis and redundant colon. Mesenteric panniculitis sounds like my "gut" issues, although I have never been given that diagnoses. I don't know that anything in my treatment would change. I have not (thankfully) had the vomiting that you are experiencing. What is working best for me is to eat small amounts frequently, making sure to eat foods with good nutritional value, and drink lots of water. I have a minimum of 80 fluid ounces a day, including up to 8 ounces of coffee a day. I occasionally have a soda or alcoholic drink, but mostly water. I hope you find relief soon, You certainly are going through a difficult time.

Jump to this post

Sally, because it is so rare, doctors are reluctant to diagnosis it. It took 5 CT scans in 5 months to get my diagnosis and only after they ruled out every other possible cause. I had endoscopy and colonoscopy, every conceivable blood and stool test, etc.

My recommendation is to keep pushing for answers. I got a lot of "Let's wait and see if it goes away on it's own" during my journey to a diagnosis. I refused to take that as an answer. I was miserable.
I saw 2 primary care, 3 Gastroents, and an infectious disease doc all during the Covid outbreak and over a 5 month period of time.

REPLY
@mmr33

Sally, because it is so rare, doctors are reluctant to diagnosis it. It took 5 CT scans in 5 months to get my diagnosis and only after they ruled out every other possible cause. I had endoscopy and colonoscopy, every conceivable blood and stool test, etc.

My recommendation is to keep pushing for answers. I got a lot of "Let's wait and see if it goes away on it's own" during my journey to a diagnosis. I refused to take that as an answer. I was miserable.
I saw 2 primary care, 3 Gastroents, and an infectious disease doc all during the Covid outbreak and over a 5 month period of time.

Jump to this post

Hello! That's the spot I find myself in. No one wants to take the MP and run with it. I want to find out why it happened, and what I can do about it. Because in my opinion it's causing other issues.

Do you handle it with diet, or something more?

REPLY

Hello everyone…I'm back…actually never left the MP page! Welcome to @sallycinnamon. I was diagnosed 6 1/2 years ago with MP. After three CTs, numerous ER visits and a surgical biopsy, I received the 'official' diagnosis and was put on Prednisone (40 mg) for three months and then began a slow taper for another 2 or 3 months. I ended up in remission for two years and honestly was beginning to forget that I even had the disease. And then it reared its ugly head again by August 2017. I have heard that it is rare to fall out of remission, but I don't know that there is enough research on that. Since August 2017, I have been battling the MP symptoms with Prednisone, Tamoxifen and Azathioprine. I also have Polymyalgia Rheumatica, so my rheumatologist has also put me on Methotrexate (which may help with the MP as well). I was told that once you have one autoimmune disease, you are susceptible to getting others. Anyway, I hope my information will help you heal in your journey to remission!

REPLY
@kimh

Hello everyone…I'm back…actually never left the MP page! Welcome to @sallycinnamon. I was diagnosed 6 1/2 years ago with MP. After three CTs, numerous ER visits and a surgical biopsy, I received the 'official' diagnosis and was put on Prednisone (40 mg) for three months and then began a slow taper for another 2 or 3 months. I ended up in remission for two years and honestly was beginning to forget that I even had the disease. And then it reared its ugly head again by August 2017. I have heard that it is rare to fall out of remission, but I don't know that there is enough research on that. Since August 2017, I have been battling the MP symptoms with Prednisone, Tamoxifen and Azathioprine. I also have Polymyalgia Rheumatica, so my rheumatologist has also put me on Methotrexate (which may help with the MP as well). I was told that once you have one autoimmune disease, you are susceptible to getting others. Anyway, I hope my information will help you heal in your journey to remission!

Jump to this post

Hello @kimh! Thank you so much for writing back! I was afraid that someone was going to eventually mention Prednisone. I have been on it for various things in my life, and had some pretty bad side effects. Is that something that you have had to deal with? I am sorry that you are going through this! MP is a stinker for sure, and my heart goes out to you!

REPLY
@kimh

Hello everyone…I'm back…actually never left the MP page! Welcome to @sallycinnamon. I was diagnosed 6 1/2 years ago with MP. After three CTs, numerous ER visits and a surgical biopsy, I received the 'official' diagnosis and was put on Prednisone (40 mg) for three months and then began a slow taper for another 2 or 3 months. I ended up in remission for two years and honestly was beginning to forget that I even had the disease. And then it reared its ugly head again by August 2017. I have heard that it is rare to fall out of remission, but I don't know that there is enough research on that. Since August 2017, I have been battling the MP symptoms with Prednisone, Tamoxifen and Azathioprine. I also have Polymyalgia Rheumatica, so my rheumatologist has also put me on Methotrexate (which may help with the MP as well). I was told that once you have one autoimmune disease, you are susceptible to getting others. Anyway, I hope my information will help you heal in your journey to remission!

Jump to this post

Welcome back, @kimh. Did you know there is a group for Polymyalgia Rheumatica (PMR) here on Connect? See https://connect.mayoclinic.org/group/polymyalgia-rheumatica-pmr/

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@sallycinnamon

Hello @kimh! Thank you so much for writing back! I was afraid that someone was going to eventually mention Prednisone. I have been on it for various things in my life, and had some pretty bad side effects. Is that something that you have had to deal with? I am sorry that you are going through this! MP is a stinker for sure, and my heart goes out to you!

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Yes…I gain so much weight from Prednisone, not to mention facial hair, foot spasms etc., but I feel like I have no choice. This has been a stubborn bout for sure. Therapy helps.

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@colleenyoung

Welcome back, @kimh. Did you know there is a group for Polymyalgia Rheumatica (PMR) here on Connect? See https://connect.mayoclinic.org/group/polymyalgia-rheumatica-pmr/

Jump to this post

Thanks for the heads up! I will check it out. I have also 'come down with' Bile Acid Malabsorption too. I also had an incident in June that may have been a mini stroke. Currently going through so many tests. I just feel like my whole body is inflamed to be honest!

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