Dieulafoy’s lesion

@swampkid - I'm so sorry to hear this about your daughter. I'm also really sorry to hear her bleeding continues. Glad she is at a major medical center that can help her, though.

What are the doctors' plans for her today?

@lisalucier Thank you for responding. Today they are reviewing the video of the capsule endoscopy. They are also watching hemoglobin levels. She needs some rest from the 3 endoscopies, 1 double balloon enteroscopy, and 2 capsule endoscopies.

I was diagnosed with a dieulafoy's lesion in 2004. It took the Dr. 12 days to find the leak. Eating solid food would agitate it and cause bleeding. I only ate broth and on the 12th day after being cleaned out for different tests I had solid food and I could feel the warm blood leaking. I got 12 units of blood in 12 days altogether. I was brought to bigger hospital and gastro Dr. coterized the lesion with a gold probe by going down the throat. The Dr. said this lesion was only the second one he saw in 30 years that's why it was so hard to find. When I was admitted my hemoglobin was 4.5 after I had passed out backwards on the bathroom floor at home. This is very serious, do to that event I have a spinal cord injury at c5 c6 and a paralyzed left diaphragm.

Tagging other familiar with dieulafoy's lesion: @goldilockszone @shellylynn123 @lauribeth. Hoping they can share experiences they or a loved one has had with this condition and support you as your daughter diagnosed with this is in the hospital.

How is she today?

Oh man, I’m so sorry. I had my first bleeding episode when I was 44. I think the cause was from taking too much ibuprofen. It was so random, I was on my way home from work and I felt the urge to go to the bathroom so I ran to the bathroom and it was nothing but blood in my stool. We called 911 and I was in the hospital for two weeks. I had blood transfusions and a colonoscopy and endoscopy and they couldn’t find anything. Once the bleeding stopped, I went home and I didn’t have any more bleeding until a year later and I had another endoscopy and colonoscopy and a pill camera and they still haven’t found anything. Since then, it has happened two more times about once a year and I end up in the hospital for two weeks with several blood transfusions and I ended up having a double balloon endoscopy, and they still couldn’t find it. I have all so fainted because of so much blood loss. So now I have to live in fear. It’s literally a living nightmare. The only thing that is saving me right now is Jesus and focusing on him. I haven’t had any coffee ibuprofen alcohol fried foods anything spicy for three years.

Any updates today?

@shellylynn123 - wow, sorry to hear about these bleeding episodes you've had leading to a two-week stay in the hospital. How unfortunate the medical providers are not finding something to account for this. What is their next plan for your treatment at this point?

@lisalucier they believe it’s in my small intestine. So once I bleed again, I have to go to the nearest hospital that does the double balloon entroscopy and hope they can catch it while it’s actively bleeding. What happened with yours?

@shellylynn123 - I don't have this condition, but I'm very interested to keep learning about it.

Have you met many others in person who also have Dieulafoy’s lesion?

@lisalucier no I haven’t. That’s why I signed up for this. I was hoping to find similar cases to give me hope. It’s so scary because every time I get a cramp in my stomach I feel like it’s going to be the time. I’m scared to travel because what if it happens on a plain or a hotel far from home.