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Dieulafoy’s lesion
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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@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.
@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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1 Reaction@yooper1949 since your experience in 2004, was there ever a recurrence of the Dieulafoy’s lesion?
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.
@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.
@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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2 ReactionsHe @yooper1949, @shellylynn123 and @swampkid, it nice to meet you. Thank you, @lisalucier for tagging me. I am comforted to find you both found each other. I am sure you would rather not have a reason to find others with Dieulafoy’s Lesion (DL).
I have read your discussion several times and in between, gone out and learned a bit about Dieulafoy’s Lesion since I do not know much about it. I have struggled to connect with you because I am not familiar, but at the same time keep thinking I need to because I recognize a huge emotional connection to what I sense behind your words. What an emotional journey!
I relate to your unknowns, I relate to the pain. @yooper1949 I do not share too much because I feel like I sound super dramatic but I have had times that death would be better. I didn’t want to be misunderstood, or even open myself up emotionally to be shut down. I am glad to see you recovered and are able to encourage others. Working through the isolation and finding hope in the middle of it all is, well…..tough, but possible.
@shellylynn123 have you shared with your doctors just how much this is affecting your day-to-day living?
@swamkip, how is your daughter? How are you?
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2 Reactions@jlharsh thank you for reaching out. I have, their response is that there is nothing they can do until my bleeding happens again. Then they will do the double balloon to see if they can cauterize it. They told me I should seek medical trauma counseling and try anxiety medicine. I took the other path and started reading the Bible which has helped me some.