Could my chronic GI problems lead to a new diagnosis?

Doubled over in pain, I can barely walk, and just breathing hurts. A tight, squeezing sensation like a vice grip envelops my stomach. I repeatedly call to try to schedule an appointment with a specialist. I eventually set an alarm every Friday to try again, believing that perhaps a squeaky wheel will be heard. But instead, I’m told that I’m still on a waiting list, my case is under review, and they’re working on scheduling me soon. I remind them that I’ve lost too much weight and can’t afford to lose more.

I call my primary care doctor again, who recommends that I limit foods like dairy, sugar, and high-FODMAP (Fermentable Oligosaccharides, Disaccharides, Monosaccharides, and Polyols) items until I can see a specialist. She always treats me with kindness.

I finally obtain an appointment at a gastrointestinal (GI) clinic, which takes a full year to do. My routine now involves taking double the normal dose of proton pump inhibitors each day and an H2 blocker at night. I also take acid medications before I eat, but things still aren’t getting better. If anything, they might be getting worse.

Recommended Reading

September 2, 2025 News by Andrea Lobo, PhD

Spinal stenosis may be complication of aging in hemophilia patients

It seems that everything revolves around eating, as the pain worsens with food. I tell my healthcare providers that liquids don’t seem to cause as much of an issue. I wonder if the pain might stem from something else, perhaps my heart. My doctor orders a heart monitor test to ensure everything is OK.

I end up in a hospital emergency room (ER) three times in just nine days. One trip is due to a GI bleed. During my third trip, I happen to be in a larger city for a conference. This ER looks very different from the one in my small town. The doctor listens in a different way and asks more questions. She suspects something is seriously wrong, especially given my significant weight loss and ongoing eating issues. I can tell she is genuinely trying to understand what might be happening. She mentions the possibility of a rare vascular compression syndrome that could affect motility and asks if she can do a CT scan to investigate further.

When I receive the results, it appears I may have an abdominal vascular compression syndrome. (I really don’t want to collect more rare conditions!) I learn that the small intestine, called the duodenum, passes through an opening between the abdominal aorta and the superior mesenteric artery. The angle at the top of this opening should be between 38 and 65 degrees, and the distance where the duodenum passes through should be between 10 and 28 mm. In my case, the angle is less than 20 degrees and the distance is less than 5 mm. This could explain my struggles, particularly after eating solid foods.

Some doctors might look at my scans and make a diagnosis right away, while others might hesitate to draw a conclusion too quickly. Similarly, in cases of hemophilia, we find that some women receive immediate care, while others need to prove they are experiencing problems before getting the diagnosis and treatment they need.

I bring the CT scan back to my new specialist, who is very kind. This specialist refers me to a vascular surgeon to discuss the possible diagnosis.

Now I’m in the phase of gathering more information and waiting for answers. Because I have hemophilia, which can complicate interventions like surgery, it makes sense to confirm the diagnosis before proceeding. I have five different diagnostic tests scheduled in the upcoming weeks to either confirm or rule out the possibility of a vascular compression issue, along with other hypotheses the doctors are considering.

Now, I wait. I find information online about these conditions and learn from others. It seems that some people spend years chasing a rare diagnosis, suffering all the while, while some are told that their issues are in their head. I feel like I’ve lived this story before.

Yet, as I walk this path, I also feel immense gratitude because this experience is different. People are taking me seriously. I have tests ordered that will be scheduled soon. Members of my care team are going above and beyond to think about my case and seek answers. This is where my story diverges from my past struggles to obtain a hemophilia diagnosis. It is so healing to have a group of people acknowledge that something is wrong and work to help me get on a better path.

Having a validating healthcare experience is truly healing. I hope answers come soon.

Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hemophilia.