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@yooper1949, @shellylynn123 and @swampkid.
Hello , sad to read that you all have been/are affected by D/L , it’s such a rare disease and from what I have read challenging to repair.
I’ve had (3) episodes in (20) months , totalling (30) days in hospital , (12) packs bloods tf.(6) CT scans , (2) colonoscopies/(5) OGD / (2) PIl camera , (3) DBE (1 retro/2anti) still no source found. Last dbe was today, last episode was May 9, 2026. I am having all
Kinds of blood checks to see if that’s the cause. Consultant now suggesting medication which won’t cure , but may lessen severity/occurrence. It’s tough to live with , when’s it going to happen , where will I be, it’s knocked my confidence, being weakened physically with blood loss, plus the mental strain. No doubt we all experience these emotions. I try to stay as fit as possible between episodes , knowing I need to be strong to deal with it and recover post bleed . I’ve become best mates with co-pilot ! Scan all test results etc for analysis. consultants appointment are scarce/costly, and you only have minutes. In my experience, Local Doctors have limited knowledge of D/L. We seem to be by ourselves. It’s a huge burden as well , folk think like ‘why can’t you get it sorted’ it’s so technical and complicated, it’s tiring explaining.
I send my best wishes to you all , and hope that your medical teams are able to locate the source and repair.
ATB , regards.
Replies to "@yooper1949, @shellylynn123 and @swampkid. Hello , sad to read that you all have been/are affected by..."
@gerardmartin, I am so sorry to hear of your condition. My daughter experienced all that you experienced back in May, DBE, pill cameras, endoscopies, colonoscopy, 14 units of blood.. She is 38 years old and lives in a rural area of Northern California. When this first occurred, she was at work and passed out. First trip to the hospital resulted in fluids and discharge. The next day her neighbor found her passed out and bleeding profusely. She was airlifted to Sutter Hospital in San Francisco and was there for almost 3 weeks. What you might find interesting is what the doctors said. They stated that Dieulafoy's lesion is a congenital anomaly that is not caused by anything she was doing as part of her lifestyle. So there is nothing that she, or you, or @shellylynn123, or @yooper1949 did cause this. Like you, she is healthy, exercises regularly and seldom drinks alcohol. After much investigation, the doctors placed 2 endoclips on 2 areas that were bleeding in her stomach. To find those areas, they gave her a drug called Reglan (metoclopromide) to help clear out her stomach for a better look. She has been slowly recuperating for a month. I hope that this information is somewhat comforting to you. My daughter has lost confidence as well. She works in a remote area doing field work as a geologist, so it is unnerving to be so far from medical facilities.
All the best to you and I hope the doctors can find an answer and treatment for you.
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@gerardmartin when I was reading your post I literally thought this was my post. Everything you are going through and went through is spot on what I’m going through. I’m so scared everyday that it’s going to happen. Everyday I’m so thankful when I can sleep in my own bed and not a hospital bed. People don’t understand what a D/L is. It’s at the point when it happens I faint. So I have to wear a diaper in the hospital. Then when the blood comes out it’s so scary. I feel like I’m gonna bleed out. Thank you for replying to us. It sucks for us but thankful to not be alone. I’ve been wanting to find a group for a long time. Do they know what caused yours?