This is really a frustrating disease. I go back and forth wondering is it more than MALS, or just MALS causing all of these symptoms. Like all of you I have been through so many tests. I had an open surgery in Feb. 2014, I stents put in Sept. 2015. My diaphragm was crushing the celiac and superior mesenteric artery. I am still struggling. This past Oct. I had an angio and a balloon done to the celiac artery. The pain got much better, however it is returning. It is frustrating. I am tired all the time, but I was also diagnosed with Chronic Fatigue around 1993 so is it that or mals....Bowel issues , nothing has helped. I don't know what it will be one day from the next.
What I do know is that like many of us have said, is that you must find an experienced surgeon for this disease. I know that is difficult. I am very fortunate to have a wonderful surgeon at Mayo in Phoenix. This site has been wonderful in helping me and I hope it can help you to as well.

May I ask what your first symptoms of this disease was. I have many stomach issues and I’m afraid may have more because nothing seems to be resolved. I have Barrett’s esophagus ulcers colon polyps diverticulitis silent Gerd. Only the ulcer has healed. I have IBS with constipatiin and diarrhea. I do hope you are getting better.

Thank you, my biggest question is are there ways to manage without Surgery? I do not love the idea of Surgery (not that anyone would) and am worried that it may not help in the first place.

Thank you. Started strictly with chronic diarrhea. I had colonoscopy/endoscopy with biopsies and they found nothing. I had several lab studies, CT’s, stool studies and nothing. In the mean time I began having nausea and pain in my liver on top of what I chalked up to be diarrhea pains. They worked me up for gall bladder issues and found it was over active so I had it out. From there I tried bite acid binding medication as they felt I had too much bile in my digestive tract which caused a laxative effect. This helped for a short period of time. Having my gall bladder out did not change my symptoms. I had a bout of extreme pain in July and was unable to eat and spent much of my beach vacation suffering. One of the days I was stuck in bed. Same thing happened again in October. I thought I had an ulcer as I could not explain the pain and tried Zantac and was eventually placed on Protonix. During times when the pain is not as severe I am still suffering with significant painb in my stomach and I have spent 1/2 of some of my days at work in the bathroom crying because of the stomach pain and diarrhea. I am having a hard time taking all of these medications and it does not seem to help but then when I don’t take them I fear I’ll be looked at like I’m not trying to do what the doctor says or whatnot. I hope you’re getting some relief from your issues as wel. Frustration is so high for me. It makes me feel like I’m crazy as no one understands this issue. People at work keep barking it’s my diet and whatever but even my husband agrees that diet makes no difference for me. Ughh!!

@kariulrich , I read your questions last night and knew I had to sleep on it.Like you said, it is so challenging, being social and eating through the holidays!! I'm sure you would all agree that it's not even fun going out to eat with MALS. I really liked your advice of taking eating slowly and eating in small increments. I realize that there are so many scenarios regarding socializing and eating through the holidays, like, if your symptoms are acting up, or if you're having a good day. We truly are at the mercy of our symptoms. I am looking forward to hearing what others say about this question. It's a good one!
As far as the health care provider question: I am learning through this connect site and the Malspals on facebook, how often symptoms can recur. So, I am hoping that those docs who are dealing with MALS patients would be open to realizing that surgery isn't a quick, complete fix to this very complicated issue. I had my last appt with my surgeon, who was wonderful, but I felt as though it was very final. I hope that if I am in need of help in the future, that she would not feel threatened that my symptoms returned.

Hi @kariulrich and fellow Connect members,

Often, healthcare providers are unfamiliar with identifying and treating patients with rare diseases, but I just want you to know that by sharing your journeys on Connect, you have made an invaluable impact on raising awareness about MALS. There is power in sharing your stories because individual rare experiences help listeners to connect, but more importantly your insights help researchers, doctors further their support and understanding of MALS.

Another great resource is Rare Disease Day (Feb 28, 2018):
https://www.rarediseaseday.org/article/get-involved-organise-an-awareness-raising-activity