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Digestive (Gastrointestinal) Problems

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BillyMac65 (@billymac65) posted in Digestive (Gastrointestinal) Problems · Recent activity · Sat, Apr 25 8:43am · View  

Mesenteric Panniculitis or Schlerosing Mesentertis (Auto-immune around small intestine)

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!!


LS4 (@lisas444) responded:

i emailed you :)

Posted Tue, Apr 14 at 2:35pm CDT · View

Doron (@doron) responded:

Although I am a private person, my goal in this post is to tell everyone that I have controlled my symptoms for 2.5 years without any drugs. On a CT scan 5 years ago the radiologist saw inflammation of lymph nodes and wasn't sure what it was but suspected mesenteric panniculitis. I was not symptomatic. In August of 2012, I came down with severe pain and bloating, and for two months I could not sleep [...]

Posted 1 day(s) ago · View
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Rebecca McRoberts | Community Manager (@rebeccamcroberts) posted in Digestive (Gastrointestinal) Problems · Thu, Apr 23 2:35pm · View  

About 1 percent of the U.S. population suffers from celiac disease, but many more chose to avoid gluten in their daily diets. Why? Dr. Joseph Murray explains some of the in and outs of a gluten-free lifestyle.

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GillyK (@gillyk14) posted in Digestive (Gastrointestinal) Problems · Mon, Apr 20 9:18am · View  

Hi, I,m new to site, so thanks for having me! I have Crohn's diseas since 25 yrs age. Am now 66. No real bad problems with it as such in my older years. food,sensitivity to high fibre which creates spasms and discomfort. But need to ask about possible connection with something I,ve developed,4 years ago e, Vertigo/balance problems. it would seem to be a kind of Vestibular problem and have had various ,treatments' that basically involve VRT exercises (drugs either did not work or made worse), but these do not help at all. I have noticed that when my gut is playing up, it exacerbates my vertigo symptoms and when I asked my Gastro consultant here in London at Barts why this is he said It is probably due to the central nervous system, as in it is all connected.,,He doesn,t seem to be very au fait with the vestibular side of things though, so I wondered if anyone could shine a light on this connection as I am desperate for an answer to this problem which has quite frankly messed up my life as it also creates extreme exhaustion. many thanks..

Rebecca McRoberts | Community Manager (@rebeccamcroberts) responded:

Hi @GillyK, we're not able to provide specific treatment recommendations online, but I have reached out to one of Mayo Clinic's physicians in hopes of providing some additional information. I should have an update for you soon!

Posted 6 day(s) ago · View

GillyK (@gillyk14) responded:

Hi, thank you. no quite understand. I am more wanting info on any connection and experiences of others, and if any have found relief with any treatments they have had that I may not know about. there seems to be very little knowledge on vestibular problems in he UK and a lot is based on guesswork, so just wanted to lok at the connection of central nervous system. Will look forward to any helpful Input? [...]

Posted 6 day(s) ago · View
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Chuck Wilson (@chuck38) posted in Digestive (Gastrointestinal) Problems · Thu, Apr 16 7:40pm · View  

I was just told that I have an open bile duct. I have an appt. my physician next week to discuss the next step in treatment. Does this mean I am going to have to have my gall bladder removed??? What are my options here?

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Anna (@bananaz4516) posted in Digestive (Gastrointestinal) Problems · Wed, Apr 15 9:36am · View  

Hi everyone. My name is Anna and I am.on here trying to find anyone with similar symptoms/situation as my fiance. He is a 27 y/o white male weighing 150lbs. He has had 2 abdominal surgeries in the past 2 years.

Tests/xray/ct scan/blood work, etc ALWAYS come back negative or they do not show anything.

His symptoms started as:
Constant pain in his abdomen/bread basket, constant nausea and daily committing for a couple of hours.

The first surgery was an emergency. He has scar tissue all throughout his GI track. The had to 'clean' his entire GI track. He was symptom free for about 3 months when it all started again. He was in constant pain and vomiting constantly. 6 months after his first surgery, he had another to remove adhesions.

After that surgery, his symptoms did no improve and his kidneys began to fail. No doctor or hospital would biopsy his kidneys to see why they failed and he began emergency dialysis in August 2014.

Now here we are stuck in the same boat.

His BP will go from the high 200's to normal by just sitting up or standing.

He is a type 1 diabetic and when he is not having a flair up due to gastritis (his diagnoses) his sugars are controlled.

If anyone has been through this or is going through this, please reach out. I'm terrifies that I will lose him and I don't know where to turn to get him the help he needs.

Anna (@bananaz4516) responded:

Just to add on.. Whenever he eats he sweats profusely and he also sweats like that why he has the abdominal pain.

Posted Tue, Apr 14 at 4:23pm CDT · View

Kelsey Mohring | Community Manager (@kelseydm) responded:

Hi Anna. I'm sorry to hear about what you are your fiance are going through! I can't imagine how difficult that must be. I'm speaking with some of our GI physicians and should have a response for you in the next few days.

Posted Wed, Apr 15 at 9:36am CDT · View
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LS4 (@lisas444) posted in Digestive (Gastrointestinal) Problems · Mon, Apr 13 10:41am · View  

I have a daughter with Sclerosing Mesenteritis, diagnosed in 2008 at age 14, and a pretty aggressive form of it unfortunately. We have a pretty amazing support group that we started with 57 members in it to date last year. If anyone with Sclerosing Mesenteritis or Mesenteric Panniculitis wish to join or find out more information about it, please respond or email me. It's a wonderfully based support, sharing, all forms of SM and MP are discussed and shared, it's a private group so won't post it here, but rather, contact me and I'll get you to where you need to go! We talk, share, newbies are greatly welcomed with love and open arms, great files and information, meds discussed, treatments discussed, and also creating a state wide database as to what docs will treat SM in the states we're all located in. My kiddo has had 17 abdominal surg with this dreaded disease and she is inpatient frequently, an ostomy now as well as there are others on our group as well, and again TPN dependent, as well as some others on our site are as well, some aggressive forms, some fatal, some mild, and some in the middle of this disease. We'd love to have you!

Kelsey Mohring | Community Manager (@kelseydm) responded:

Hi Teresa. @LS4 would be the best person to tell you about the group, but here is some more information about sclerosing mesenteritis: Hope this helps!

Posted Mon, Apr 13 at 9:29am CDT · View

LS4 (@lisas444) responded:

Thank you. We got Teresa over this am.   We have about 90 members and a wonderful support group. Thx :) Sent from Yahoo Mail on Android From:"Mayo Clinic Connect" Date:Mon, Apr 13, 2015 at 9:29 AM Subject:Kelsey Mohring | Community Manager mentioned you in a post - "Hi Teresa. @LS4 would be the best person [...]"

Posted Mon, Apr 13 at 10:41am CDT · View
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Jmta2006 (@jmta2006) posted in Digestive (Gastrointestinal) Problems · Wed, Apr 8 3:41pm · View  

Hello! My husband is scheduled for gallbladder surgery for Monday. It is [...]

Hello! My husband is scheduled for gallbladder surgery for Monday. It is highly inflamed and working at 9%. He had a hida scan and an endoscopy done. They did a biopsy to see if there were any ulcers and everything from that came back good. My husband has been getting pains in his back and under his ribs. He has gotten these before but they subsided, not this time. He has no appetite and is very full after small meals. No energy is another complaint. He has a stressful job and they say stress can bring on the inflammation as well. My question is should he put the surgery off until fall if he tries to live a less stressful lifestyle and also manages a healthy diet or will he never be able to gain the functioning of his gallbladder back? Thanks!

Kelsey Mohring | Community Manager (@kelseydm) responded:

Hi there. I'm sorry to hear about your husband! Unfortunately, we can't provide actual medical advice online, however, check out this article about cholecystitis, which is inflammation of the gallbladder: Though stress can certainly exacerbate the inflammation, this article outlines some of the possible root causes and also the potential complications if left untreated. If you'd like to speak to someone at Mayo Clinic about a second opinion, please call one of our appointment [...]

Posted Wed, Apr 8 at 3:41pm CDT · View
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Cathyann (@cathylbw) posted in Digestive (Gastrointestinal) Problems · Fri, Apr 3 7:26am · View  

I have severe abdominal pain after a bowel movement. The pain can last for hours. I have been taking Tramadol. I aways use a heating pad. Sometimes I can get relief, but not always. Once the pain is gone I feel good, until the next bowel movement. I am in kidney rejection after a 10 year transplant. Have so many medical issues due to kidney. The Dr says this is not kidney related. Most days are unbearable and I hardly leave my home. Your suggestions are appreciated.

Rebecca McRoberts | Community Manager (@rebeccamcroberts) responded:

Hi Cathyann, Unfortunately, we're not able to provide medical advice or recommendations online, but it might be helpful to try our Symptom Checker. You can select your symptoms and related factors, and then the website will list a few possible causes. I've included the link here:

Posted Fri, Apr 3 at 7:26am CDT · View
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contractions in my stomach area.

Posted: Fri, Mar 20 at 11:30am CDT

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