Bree H.'s Story
Published: September 19th, 2026
Hi I'm Bree, I'm 27 years old and live in the United States. It has taken me a while to decide if I even wanted to do this. I’ll be completely honest here. I was caught up on the thought of only being known for my SMAS, I never wanted to be known for being sick. I realized now it's not my only and I can build off of that and have a good life still and be known for something else. While yes I am known by my friends and family as the sick one. I am also known as the kind one, the one who always shows up no questions asked, That is far greater than my diagnosis. I think it's also time to share what I've really gone through. What's brought me here and wanting to advocate for a better life.
I was not immediately diagnosed with SMAs. I had stomach pain for years, I honestly cannot remember when it all started. It's been so long. I did go back into my chart and found it first noted in November of 2022, It was an incidental finding when I went in for abdominal pain and had enteritis. From there I spent 610 days in extreme pain and discomfort, struggling with food etc. I was constantly at the walk in, I ended up being told it's in my head, it's just IBS, etc.
I have lost jobs over these struggles while undiagnosed, vomiting, struggling to eat, constant pain etc. My own family during this time also did not believe me and was calling me a hypochondriac. I am so glad I didn’t listen despite feeling so alone.
In 2023 I decided to go back to my primary I had when I was around 12. I remember he listened, the only reason I really left was he was male and I wasn’t really comfortable with having a male doctor at the time. He heard me and his colleague actually found my Celiac disease. My Transglutamine tissue blood test was 38. I was like oh that really is all it is? I was heart broken. I loved pasta and bread and actually was my primary diet because it was soft. Prior to my Celiac diagnosis I was in sooo much pain that I was literally on a liquid diet the last week before my test came back. I could only tolerate Ensures, and I did get a short dose of pain medication for comfort. It honestly felt like I was swallowing a boulder covered in razor blades every time I ate.
After the diagnosis I assumed oh its just gluten pain. I continued to stay gluten free for about a year still struggling in pain constantly but able to hold a job better and function more. I kept in contact and telling my primary about everything. We were both stumped. I decided to look back into my old CT scans one day and I scheduled an appointment with my primary. I asked what SMAs was and why this was skipped. It was marked as an “incidental finding”. SMAs is so rare it couldn't possibly be the cause of all this pain could it? He put in a referral to the best GI doctor in my state, per my request. We did a new CT and there it was. SMAs, worse than the original incidental finding. My GI helped a little bit we did Endoscopies and Colonoscopies, nothing with the SMAs was found on either of them. I was referred to a general surgeon in my state. He explained everything and told me it was out of his realm and I should get a NJ placement and find a surgeon who specializes in this.
I at this time denied the NJ placement due to going gluten free I had put weight back on.
I thought I had found a surgeon in Washington, based on google searching this surgery was listed in his linkedin, I was so wrong. This surgeon strung me along before ghosting me completely. I was tired of being in pain and frustrated. I still did the best I could to keep on my weight and try to be a normal person. I felt defeated, back to square one.
I knew I wanted to be close to home. I did not want to fly across the country to do this surgery, however it was very hard to find someone semi close to Montana and get one of the most successful surgeries for my condition. Somehow I lucked out. I found someone not only within my hospital's affiliation but only a 10 hour drive away.
Unfortunately during this year's long journey I did develop Nutcracker, pelvic congestion, May Thurner and POTs. I have been using comfort measures to maintain all of my syndromes - lidocaine patches, pain medication, zofran and IV fluid therapy.
Beginning of 2025 I spent my New Years in the hospital, severe pain and vomiting. During this they kept me for around 30 hours or so. I underwent CT scans, another endoscopy, and did a barium swallow. No changes, just SMAs. They sent me home. By May of 2025 I had started having a ridiculous heart rate. Hitting 170s and on really bad moments 210bpm. I was dizzy and blacking out. I was visiting the ER weekly because of these struggles. Luckily for me an ER doctor told me it sounded like POTs and a few days later I'm back with my primary going through what is needed for diagnostics. I met criteria for POTs and was placed on medication and weekly IV fluid infusions and sent to physical therapy. My first physical therapist was not comfortable with me as a patient and referred me to another. Why you might ask? Apparently I am hypermobile. I met with the new therapist and worked on strengthening exercises for hypermobility. The original plan was to do the CHOP protocol but I didn’t have a way of staying consistent with it. She recommended a doctor in my city that actually specializes in hypermobility. I am still waiting for this appointment that was scheduled 10 months ago.
I got the yes from my surgeon's office. They will take my case but they needed a few more diagnostic procedures done - Venogram and renal plexus block. Neither of these are done anywhere in my state. I wanted to stay in my hospital affiliation due to cost reasons as I had financial aid assistance through my hospital of 100%. I managed to do so, and in November of 2025. I packed my bags and headed to Mckay Dee in Utah.
I’m about as excited as anyone with chronic illness can be to be in another hospital because I’m headed in the right direction. I was confident going in. I went back and they let me know they could not do awake sedation for the venogram due to the renal plexus block. I went through a full venogram with only lidocaine at the injection site. Honestly pure torture. The lidocaine wore off quickly and I was hysterical. They asked if I wanted more but said they were almost done so I denied it. - Big mistake. Immediately after the venogram I headed to CT for my renal plexus. I was already stressed and emotional. They injected a large needle into my back to place lidocaine in my kidney, I jerked a bit and was told I needed to stay absolutely still, again I am hysterical. I wanna note I could say yes to awake sedation at any time but I would have to likely redo my renal plexus if I did. I toughed it up and cried while holding my nurse's hand as she kept telling me to breathe. I could hear monitors beeping like crazy. My vitals were whack. It was over thank god. I went to recovery where I was in more pain than when I started. My job now was to evaluate how my renal pain felt from the block. If anything it was worse than before the block. They sent me out the door with a patient belonging bag full of instant heat and cold packs for my comfort and told me to try to not take any pain medication for 3 hours. I didn't speak the entire drive and sat there frustrated and uncomfortable until we reached our hotel in Idaho. I then took a warm shower, some pain medication and curled up with some heat packs. The next day I was sore but nowhere near as bad.
My SMAS pain started getting worse in December of 2025, I went in to redo my CT at this point. Despite being a normal weight, unfortunately my angle dropped 5 degrees. I was heartbroken and felt defeated. I finally said yes to the NJ tube in hopes more weight would help.
January 2026 I lived with an NJ getting 2000 calories nightly for 8 weeks. I gained 20lbs. While yes it only slightly helped my symptoms I am still in pain. I completed a surgical consult in March 2026 where upon review from my surgeon he found a 4th compression syndrome which was May Thurner. My meeting with the bendy doctor is May 4th, My surgery is May 6th, he is tying the groin vein, doing Dr. Ang’s version or the surgery - a duodenal derotation and we are relocating my left kidney. He will be placing a GJ feeding tube during surgery.
Life after surgery: May 6, 2026
My POTS seems to be under better control, I don't get as frequent spells, I know part of that is medication but the other side is finally having proper blood flow. I can move and eat and be myself again. I am no longer in pain and despite the giant scar across my abdomen I feel I am healthy again. I have energy, I can keep up with my friends again, I no longer have to turn down a day out in the sun in fear of flares.
Surgery has changed my life for the better, I can be me again and would do this all over again if it meant I got this ending to it, I definitely made some risky choices after surgery due to being stuck at home and stir crazy, do not recommend trying (they have landed me in the ER with the pain) however I have gotten to go to the Renaissance fair, I got to go out on my paddleboard, I get to do things again and that means more to me than you'd ever know. I am finally nurturing my relationships like I have always wanted to without having to back out because my body said no.
Surgery was a very scary thought for years, I'll be honest the only markings on my body prior to surgery were tattoos, the scar is a big change, but a close friend had told me thats my battle wound that tells a story that I am stronger than I know and I truly am a Warrior Princess. I also thought I might die during surgery, but I didn't, I did not expect the change in my body that I got from this, I did not expect to come out the way I did. I do not believe surgery is the answer for everyone, however for me it was. I got my life back and that is all I could've asked for. Big thank you to my team of doctors at Intermountain health for the support until I had surgery and the biggest thank you of all to Dr. Zendejas-Ruiz. You have changed my life in ways I did not know were possible and I never thought it was possible. To my friends and family thank you for finally believing me and giving me support where needed, the journey has been insane, Thank you for never leaving me behind.
I felt it was important to share my journey through this. You are stronger than the storm and you are your biggest advocate. Finances were a hard thing during my journey but I found a way. Ask for financial aid through your hospital, ask for community support, look into websites to help negotiate bills. You are the only one who knows your pain and can fight for a better life. Here's to being SMAS strong.
Here's to being Breezy Strong.
