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"With only about 500 reported cases in the history of English-language medical literature, recognition of SMA syndrome as a distinct clinical entity is controversial, with some in the medical community doubting its existence entirely. SMA syndrome is also known as Wilkie's syndrome, cast syndrome, mesenteric root syndrome, chronic duodenal ileus and intermittent arterio-mesenteric occlusion. It is distinct from Nutcracker syndrome, which is the entrapment of the left renal vein between the AA and the SMA.
SMA syndrome is estimated to have a mortality rate of 1 in 3. Delay in the diagnosis of SMA syndrome can result in fatal catabolysis (advanced malnutrition), dehydration, oliguria, electrolyte abnormalities, hypokalemia, acute gastric rupture or intestinal perforation (from prolonged mesenteric ischemia), gastrectasia, spontaneous upper gastrointestinal bleeding, hypovolemic shock, aspiration pneumonia, or sudden cardiovascular collapse from increased velocity of bloodflow in the SMA due to the reduced mesenteric angle.
Go here to this link to know about my fight http://rare-disease-day-belfast-2011.blogspot.com/2011/02/paula-mattis-is-real-super-hero-she.html ***Visit our sister group, by Samantha Mina: http://www.facebook.com/group.php?gid=170641319067&ref=ts Also go look and my group http://www.facebook.com/group.php?gid=129829963700139&v=info Superior mesenteric artery (SMA) syndrome is a very rare condition characterized by recurrent vomiting, abdominal distention, weight loss, and postprandial distress. The cause is compression of the duodenum between vessels and the vertebrae and paravertebrae muscles when the angle between the superior mesenteric vessels and the aorta is lower than 18°. The diagnosis is difficult and usually is made by exclusion. Conservative management is helpful at first; however, symptom recurrence would indicate surgical treatment. EVERY LIFE COUNTS Let's get people the Public, Doctors start taking this more seriously and get Awareness/Prevention, researching possible causes and work towards early detection
Edited: 01/29/2016 @ 11:46am
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!!
My Wife having problems with belching and angina
About two years ago she was diagnosis with Pimentel Angina, after having on off crushing pains, belching, and sweating.
This journey is very strange starting about 10 years ago after being rushed to the hospital after having a late night dinner. At the hospital they gave her a GI cocktail and was released, no other symptoms appeared until about 4 years ago with a tuned up vengeance. She started burping VERY loudly and if not releasing the burping feeling then having that feeling I mentioned earlier, with the pain going away in 2-5 minutes. This went on for 2 more years when finally one morning she passed out while not being able to burp. When she came to her blood pressure was off tilt and they treated that and also the chest pains "symptoms". After running all the test for heart attacks no symptoms were found but her blood enzymes were slightly elevated. She was released the next day and was back in the ER within 1 week with the same issue, chest pain, sweating, belching. This time the hospital hooked her up to a EKG and it happened she started having a Angina attack, thus being diagnosis. After being checked for blockage in her arteries and multiple test and a few small attacks she was put on a variety of calcium blockers and medicines for anti spasms. As you can see this started over a decade ago thinking it was Gerd or a stomach issue now to having attacks daily (before taking medicines) now to having attacks once or twice a month, only having immediate relieve with a Nitrate tablet or two. Now I am no doctor but I think all of this is stemmed from a stomach issue, since she can't feel better or relief if the belch doesn't come up. Now she can feel it coming or a strange stomach feeling. She is seeing a Gastroenterologist and having misc. test run to investigate. The nitrate tablets are the only immediate relief when the attacks come (even after taking the bank of medicines). The belching and stomach feeling starts this process then developing into the chest / back / sweating / feeling..
Edited: 01/26/2016 @ 8:04am
I was diagnosed with IBS when I was 18. I'm now 30. Early in 2011, I saw a new GI doc for unexplained feelings of fullness after eating a very small amount of food, nausea and vomiting and severe pain- all revolving around eating. He ordered a gastric emptying studying and told me I had "mild delayed emptying," which he classified as "mild gastroparesis" on my chart. He gave me Zofran 4 mg to take as needed and hyosciamine for stomach spasms. At the beginning of this year, lost 15 pounds in 2 months due to the worsening of these symptoms. I've had many sleepless nights with a horribly painful distended stomach- last night being one of the worst- and I'm on 3 nausea medications- tigin, emend and marinol- and heavy doses of all 3. I was in the hospital in February for 2 weeks with an NG tube and sent home with the medications I mentioned. I was severely dehydrated when admitted, as I'm not always able to tolerate liquids either. My GI doc requested a psych consult and I was grilled by a psychiatrist and his nurse as soon as I had a bed and fluids had been started. The outcome of this was that I did not need additional psychological intervention. (I see a therapist every 2 weeks b/c of this and other chronic pain I deal with- Fibro and osteoarthritis). So here is where I'm at: I was supposed to get in with a doctor who has access to a trial drug, but I was denied access to the program because my scan only shows mild delayed emptying. Yet my symptoms are of someone with a very severe form of it. The psychiatrist determined it's not psychological. So what am I supposed to do?? The only reason I'm gaining weight is due to the marinol, which increases my appetite but then I have to deal with the pain and nausea of eating. I don't vomit as much, because of the drugs, but I still feel nauseated after eating (even on an full liquid diet). I've kept food diaries for years and tried everything. I tried gluten-free. I eliminated "toxic" chemicals (those found in diet pop), caffeine- you name it, I've tried it BEFORE this took over my llfe in January and I'm continuing to eat as tolerated but I'm in hell. Does anyone else have a gastric emptying test that shows mild delay, yet you have severe symptoms? If so, I would love to hear from you. I hate the marinol b/c it doesn't help much with the nausea and makes me want to eat, after which I feel horrible. Please please tell me there is someone like me out there, and that help is available. Any and all replies are appreciated.
P.S. I was in the ER last twice last week due to dehydration and pain that is unbelievable and off the charts. I don't understand
Edited: 01/09/2016 @ 4:59pm
Seven years ago I had a nissen fundoplication done by a great surgeon here in San Antonio,Texas. I had a very large hiatal hernia. The wrap has come undone and there is another hernia. I have visited with the same two surgeons that did the original surgery. At the time (seven years ago) I was told that the surgery could never be repeated and if I wanted to ever consider gastric bypass, it would not be possible. These doctors are surgeons at a bariatric clinic and this is the types of surgeries they do every day. During my visit last week, I was told a repair surgery was necessary and once they get in my abdominal area, if the stomach and herniated areas are in really bad shape, I would need gastric bypass as a last resort. I am almost 62 years old and about 25 pounds over weight. I am scared to death and the thought of something going wrong leaves me in great fear. Have any of you ever had the repair done? The surgery was not a walk in the park, but I have a very high tolerance for pain. The discomfort isn't a concern, but something going wrong is.
Edited: 01/09/2016 @ 4:26pm
My wife was diagnosed with gallstones but doesn't want her gallbladder removed surgically. She would pass the gallstones and keep her gallbladder. Does anyone have experience successfully passing gallstones?
Edited: 01/06/2016 @ 10:22am
My son has been ill for about 8 weeks now. He is 16 years old. Symptoms started with nausea, diarrhea and vomiting and have progressively gotten worse. These are daily occurrences but very bad in the morning and then tapering off to just nausea and diarrhea for the rest of the day. He has also complained of a mild back ache. He has to date lost 27 pounds. He sleeps about 16 hours a day. He drinks an abundance of fluids but never "a meal," mostly just snacking on yogurt, rice, bananas, occasionally a half a sandwich, etc.
He has seen several doctors and is currently seeing a GI specialist. He has had multiple blood tests, stool tests, a ct scan, colonoscopy and upper gi all results were normal. His doctor recently put him on Flagyl in the event something was missed and my son thinks that makes it worse.
I'm have requested an appointment through Mayo Clinic. I am beyond frustrated. My son cries daily (he has never been an emotional young man) and has recently stated that he thinks he is dying. Of course this is just awful to hear from anyone let alone your child. Prior to this he was never sick a day in his life, when I brought him to the doctor at 14 for immunizations they actually had to look in the archives for his records. He has always been very healthy.
I am just consumed with trying to help him to the point where I am having a difficult time sleeping.
I don't know if anyone can offer advise or can relate to his issues? I guess just venting on this forum is helpful.
Edited: 12/27/2015 @ 8:45pm
I have been having problems with my stomach for the past 16 months. I get severe abdominal cramps that render me almost unable to get out of bed. I alternate between severe constipation for a few days, and then either diarrhea or bowel movements that seem to go way past what I have consumed. My cramps will go away and then return without warning. There are very few foods that I can eat that do not worsen my symptoms, and when I am cramping, it feels like my tailbone is trying to break through my skin. I have been subjected to practically every test available in my area with no diagnosis made. I am at the end of my rope, because lying in bed In pain is a horrible existence.
Edited: 01/09/2016 @ 4:53pm
Was my gluten challenge too short?
My daughter tested very positive for Celiac which was confirmed with the Endoscopy. Her doctor suggested that my wife and I get tested.
We had thought that I may have it as well as I had been on a extremely low carb diet that one of my doctors put me on to help control my
reflux, which a lot of issues went away shortly after going onto the diet. I checked with my primary doctor to see how long I need to do the
gluten challeng and he said to eat a normal gluten based diet for a week (what is a normal gluten based diet?)
I checked with my gastro doc and he said to eat 4 slices of bread a day for 4 weeks. The thought that I may have
it came from about 2 weeks before my daughter was tested and I had a few glasses of Whiskey (cheap stuff) and the next day stomach
cramps and many visits to the bathroom. Everyone passed it that I was hung over, which I have never been before.
A week or two later I have even less whiskey and get sick again (black velvet whiskey)
The next day I have a piece of cake and I get sick yet again.. Not really knowing what is going on.
My daughter gets tested and comes back positive. I start the gluten challenge and it was hell for 4 weeks. Massive fatigue comes back,
bruises all over again, stomach cramps (whcih were new), many visits to the bathroom (new), socially withdrawn, gained 25 lbs and massive
appetite came back.
Reading on the celiac disease foundation site they suggest a 12 week period for a gluten challenge.
Was mine too short?
My doctor ordered 2 tests. The Tissue Transglutaminase IGA and the Gliadin Antibody IGA.
Both came back negative, but online reading suggests that anything short of 6 weeks is too short and you will get a negative result.
2 days after I had stopped the gluten challenge, I feel a ton better.
Do I see a different doctor and restart the gluten challenge for longer (I would hate to restart it again)?
Edited: 01/07/2016 @ 8:51am
I need to find a doctor who can treat my 22 year old for crohns. He is on remicade now ans has been since Febuary of this year 2015. He is doing great but.....
He was told he needs it for life. I'm not convinced of that.
His dr no longer takes his ins. so we need another dr whom I trust who can take over his care.
Have anyone ever had the sleeve gastrectomy at Mayo Clinic and what Dr. did you use?
Edited: 01/09/2016 @ 4:56pm
Maybe someone else had this problem. 98% of the time i eat and then i get pains in my stomach and have to use bathroom. Sometimes the pain can last five days or more. I know i have kidney stones and maybe thats part of the problem.
Hello, I have been having digestion issues such as being gassy with difficulty relief from it for a long time. Also, last few months I have had heart burn, and tightness of breath. I have had my heart check and my heart is fine with no relation to the tightness of breath. It has been about a month that I have developed smelling a burn like smell.... For a while I did not think it may be inside my body. After a while I have noticed wherever I go the smell follows me. It is not a body odor :). The smell is in my nose. But, I notice anywhere I went the smell was there too. I have explained to a couple of Doctors, and their reaction was not of a certain diagnosis because they have not tested me for it. But, they thought it may be rising from my stomach(inside). So, I thought to post it here to see if anyone has heard of such an issue, and can suggest what kinds f tests I should have done for diagnosis! Thank you in advance.
I have a j pouch. Who do you use for follow up care? I always want back to my surgeon but he is now retired.
I was diagnosed with Primary Biliary Cirrhosis 5 yrs ago i have been going downhill lately I itch constantly and can't get enough sleep im just so tired. Well my doctor told i wouldn't be able to get a transplant from a living donor which will make my time on the transplant listwhen that time comes even longer does anyone know if this is true or should I start getting my family tested for compatability
Edited: 01/21/2016 @ 8:30am
IBS affects people of all ages, although it tends to start before 35, perhaps due to the lifestyle shifts that occur as you transition into college and your first jobs, says Mark Larson, M.D., a gastroenterologist at the Mayo Clinic. “In your 20s and 30s, so many things are changing. The anxiety about the future and relationships is much more intense, and your gut takes a hit from all that stress.” Learn more about the signs, symptoms and treatment. Do you suffer from IBS? Have any tips for others facing the same struggle?
Edited: 09/01/2015 @ 11:51am
According to the Celiac Disease Foundation, one-third of the population claims to suffer from gluten sensitivity, and researchers at the Mayo Clinic say the number of patients reporting gastrointestinal symptoms has quadrupled over the past 60 years! So what happened?
Some people think that ancient grains may be the solution to the problem. Check out the link and then answer our poll - do you suffer from symptoms of gluten sensitivity?
Edited: 08/26/2015 @ 10:06am
Five years ago, I had to have an emergency hysterectomy with delivery of my son. A couple doctors told me that I am lucky to be alive after that procedure and have had more procedures in my abdomen area since that time. Around Christmas, my stomach swelled overnight to where I look 8 months pregnant. It is almost daily that someone asks when I am due. I have gained 45 pounds and went from wearing a size 8 to barely being able to button a 14. I have seen every doctor imaginable - have been to a colorectal surgeon, a GI doc, pelvic floor therapy, therapy to release scar tissue in my stomach, OB/GYN, urogynocologist, lymphedema specialist, you name it. My stomach never goes down at all - no matter if I prep for a test that requires me to drink tons of laxatives and use an enema. I have been tested for celiac disease. All tests come back normal. I am nauseous a lot, short of breath, beyond tired, have pelvic and back pain and pressure. My normally low blood pressure has shot up to staying around 156/94 so I am now on medicine to control that. I am a mother of 4 (who is not able to be a "normal" mom) and am struggling with my issues and not finding any relief. Every doctor I see agrees there is a problem, but no one knows what the issue is or seems to care how it is effecting my life. The most recent came back that it is probably just IBS. I have ran out of my FMLA and all of my leave at work and am on the verge of being let go because of not being able to work 8 hours a day. I do have an appt scheduled at the Mayo Clinic in September and have been gathering all of my records from various doctors, various tests, etc. I don't know where else to go and pray that going through the expense of getting to my appt. and staying for testing will work in my favor.
I AM A 52 YEAR OLD WOMAN WHO BECAME ILL AT 24. I ALWAYS SUFFERED FROM SEVERE CONSTIPATION, BUT IN MY EARLY 20'S I STARTED EXPERIENCING SEVERE FATIQUE, JOINT PAIN AND SEVERE GASTO ATTACKS. AFTER MANY DOCTOR VISITS I WAS DIAGNOSED WITH GENETIC BLOOD DISEASES AND CONNECTIVE TISSUE DISEASE. I HAVE HAD 13 SURGERIES AND EACH ONE RESULTED IN INFECTION AND VERY LONG RECOVERIES. I AM NOW AT A POINT THAT THE ONLY WAY TO KEEP ME ALIVE, DUE TO THE BLOCKAGES, IS TO DO A FULL COLECTOMY AND RE-ATTACH THE RECTOCILE. SINCE I HAVE CONNECTIVE TISSUE DISEASE I WAS TOLD THAT REMOVING THE COLON IS NOT AN OPTION BECAUSE THE RESECTION WILL DETACH AND I WILL BECOME SEPTIC. THEY CAN'T FIX THE RECTOCILE BECAUSE THEY SAID THAT AFTER SO MANY ABDOMINAL SURGERIES, THE SCAR TISSUE IS VERY EXTENSIVE AND IF THEY REMOVE IT, DUE TO THE CONNECTIVE TISSUE DISEASE, I WILL BECOME SEPTIC. AFTER 10 DIFFERENT EXTENSIVE CONSULTS, I WAS BASICALLY TOLD THAT MY ONLY OPTION WAS TO GO HOME, WHICH IS WHERE I AM ALL THE TIME BECAUSE I AM TOO WEAK, FATIQUED, NAUSOUS AND FILLED WITH JOINT PAIN TO GO ANYWHERE. I STILL CAN'T BELIEVE THERE IS NOT A WAY FOR A SURGEON TO HELP ME, EVEN IF THERE WAS A POSSIBILITY OF PUTTING IN AN NG TUBE . ANY THOUGHTS OF SUGGESTIONS WOULD BE GREATLY APPRECIATED!!
Edited: 08/23/2015 @ 9:05am