Dieulafoy’s lesion

Posted by swampkid @swampkid, May 29 10:16am

My 38 year old daughter collapsed at work. By the next day she vomited blood as well as experienced bloody diarrhea. She was taken to the hospital, transfused and airlifted to a major city medical center. Diagnosis is Dieulafoy’s lesion. Several endoscopies, including balloon, and 2 capsule camera investigations resulted in placing clips but the bleeding continues. Any comments by Dieulafoy sufferers who would have some experiences would be greatly appreciated. She remains in hospital.

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Profile picture for yooper1949 @yooper1949

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.

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@yooper1949 - are you undergoing any follow-up treatment for your Dieulafoy's lesion?

@swampkid - how are things going with your daughter?

I also really wanted you all to meet @jlharsh.

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Profile picture for yooper1949 @yooper1949

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.

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@yooper1949 I am so sorry to hear of your experience. You are the only person that has reached out who has had this condition. It is my daughter who suffered. She lives in rural Northern California and had to be airlifted to SF. She was in the hospital for 10 days. After several endoscopies and other tests, they placed 2 “endoclips” and so far they seem to be holding. The medical professionals did not give her any information about restricting her diet, but she is anyway. She is anemic from all the blood loss and will need iron infusions. Her primary is following her closely at this time.

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Profile picture for yooper1949 @yooper1949

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.

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@yooper1949 since your experience in 2004, was there ever a recurrence of the Dieulafoy’s lesion?

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No recurrence. They coterized it mid October and went down with scope mid December to check it and it looked good, I saw a picture of the location. A pain pill was the cause. I've never recovered fully from the bleed.

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Profile picture for swampkid @swampkid

@yooper1949 I am so sorry to hear of your experience. You are the only person that has reached out who has had this condition. It is my daughter who suffered. She lives in rural Northern California and had to be airlifted to SF. She was in the hospital for 10 days. After several endoscopies and other tests, they placed 2 “endoclips” and so far they seem to be holding. The medical professionals did not give her any information about restricting her diet, but she is anyway. She is anemic from all the blood loss and will need iron infusions. Her primary is following her closely at this time.

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@swampkid I went through a major ordeal, I felt at the time it was the end. I prayed to get better so I could watch my grandkids grow up and here I am. I remember it like it happened yesterday. Your daughter is the only other person I ever heard of having a lesion. The Dr coterized it, He said if I was a smoker that would have been a difficult fix. Its a long story so I will leave it at his point.

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Profile picture for Lisa Lucier, Moderator @lisalucier

@yooper1949 - are you undergoing any follow-up treatment for your Dieulafoy's lesion?

@swampkid - how are things going with your daughter?

I also really wanted you all to meet @jlharsh.

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@lisalucier My stool was black like coffee grounds during the bleed. Black stool means the bleed was in the stomach area. If stool is red it means its below the stomach. I've checked my stool color every time since October of 2004. Nothing else has to be done, just pay close attention .

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