1. < Digestive Health

Chronic pancreatitis, mesenteric panniculitis... and more?

Posted by sallycinnamon @sallycinnamon, Sep 10, 2020

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!

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

sallycinnamon | @sallycinnamon | Sep 18, 2020
In reply to @kimh "Hello everyone...I'm back...actually never left the MP page! Welcome to @sallycinnamon. I was diagnosed 6 1/2..." + (show)
@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!

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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
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Sep 18, 2020
In reply to @kimh "Hello everyone...I'm back...actually never left the MP page! Welcome to @sallycinnamon. I was diagnosed 6 1/2..." + (show)
@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/

REPLY
1 reply
kimh | @kimh | Sep 18, 2020
In reply to @sallycinnamon "Hello @kimh! Thank you so much for writing back! I was afraid that someone was going..." + (show)
@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!

Jump to this post

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.

REPLY
kimh | @kimh | Sep 18, 2020
In reply to @colleenyoung "Welcome back, @kimh. Did you know there is a group for Polymyalgia Rheumatica (PMR) here on..." + (show)
@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!

REPLY
chess17109 | @chess17109 | Mar 27, 2021

Hello, I understand part of your issue. Do you eat broccoli?
The reason I ask was because I had a very old gatro doc who after a severe blockage and a resection of bowel, read younger Dr reports came to me and said no more broccoli because every place there is a resection ordered bowels turn, florets open to many times there size due to liquid around them and start a blockage, I have not had a problem since but dern I miss broccoli. But don't miss the issues. Good luck.

REPLY
1 reply
Valerie | @lacy2 | Mar 27, 2021
In reply to @chess17109 "Hello, I understand part of your issue. Do you eat broccoli? The reason I ask was..." + (show)
@chess17109

Hello, I understand part of your issue. Do you eat broccoli?
The reason I ask was because I had a very old gatro doc who after a severe blockage and a resection of bowel, read younger Dr reports came to me and said no more broccoli because every place there is a resection ordered bowels turn, florets open to many times there size due to liquid around them and start a blockage, I have not had a problem since but dern I miss broccoli. But don't miss the issues. Good luck.

Jump to this post

@chess17109 ...hope you dont mind my asking but was it raw or cooked broccoli yu mainly ate?

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