- Superior Mesenteric Artery Syndrome
- Interviews
Sarah's interview
How did all start?
I complained and kept complaining and asked to see a dietician or nutritionist because I felt like I wanted one and they actually connected the so obvious dots my drs were missing for SIBO. For SMAS I went to ER when my digestive pain worsened and then the CT contrast suggested SMAS
Do you already have a diagnosis? How long did it take you to get it?
SMAS. Immediately in hospital visit because they are more thorough and take things more seriously in the ER from my experience. SIBO it took me rediculousness before someone (my simple nutritionist to ask and suggest that to my gastro dr.) before that they did a tongue biopsy made numerous dr appointments such as with infectious diseases (?!?!) who tested me for aids (rolls eyes) and I went to throat and tongue dr who blew me off as fine and the infectious disease guy obvi was taking care of me, and my GI never ordered, and I went to dentist urgent care to look at tongue and then as mentioned a tongue biopsy until I went to nutritionist who was like did anyone order a SIBO test which nobody had even though I complained repeatedly about this appearing after a dr gave me an overload of antibiotics and I was certain that was it without the test happening and I was right
For what medical specialties have you been treated? What has been the most useful specialty for your?
My nutritionist visits, cus they are more holistic, it’s like I can actually see fear in their eyes and they actually care
What has been the most useful thing for you so far?
Individual research and staying grounded to the idea of nutrition and natural solutions that would classify as more functional medicine not traditional westernized
What have been your biggest difficulties?
People who care, can diagnose, pay attention, listen. I feel like I treat myself more then most Drs and that’s tough because I need them to do a better job then me.
How has your social and family environment reacted? Have your social or family relationships changed?
I’ve hid from people since learning about SMAS. I’m torn about telling people. Torn on whether I can continue doing acro or circus for fear of connection to my spine or making anything worse. I don’t want pitty. From family I want more support and knowledge because it’s too hard and too much to bear for my trying to fight and figure out and be restricted to LOWFODMAP diets alone. I get depressed and overeat because I am overwhelmed and feel hopeless because Drs and medical care is shitty
What things have you stopped doing?
Eating three meals a day, working out, acro, being connected to acro community which is like my entire social life,
What do you think about the future?
I’m worried. I have a rare condition and people were idiots when it came to something as common as SIBO so ya, I’m a bit fucking overwhelmed and worried
So far, which years have been the best years in your life? What have you done during them?
This one and in 2011. In 2011 I was in love and being loved and working towards my dream career. This year I took my sick self across Europe and to an acro retreat in Thailand. Because no matter how sick I could have been I wanted to do that and enjoy it and feel alive and I did.
What would you like to do if you didn’t have your condition?
Try to lose weight and get fit without fear of triggering a life altering SMAS case with feeding tubes and inability to eat and vomiting. Continue developing my Acro and Circus skills. Have regular bowl movements and not SIBO cus SIBO is really shitty.
If you had to describe your life in a sentence, what would it be?
Unique. Acrobatics, circus, travel, outdoor adventure and career path for summer camps. So... unique especially cus that’s all as an adult for the most part.
Finally, what advice would you give to a person in a similar situation?
See a nutritionist and keep reading online for answers. Maybe keep food journals that associate how you feel after foods or environments (cus something in an environment can make you sick that isn’t food) and maybe if you avoid these things you’ll start to recover more
