Are you living with Dieulafoy’s lesion? Let's connect.

@shellylynn123 Whew! It sounds like you are living sorta like walking on eggshells. That has to feel like a tremendous weight.

I am curious about a couple things that resonate with me. You mention ibuprofen as the possible culprit and also that your doctor has made recommendations to address perhaps health anxiety, through counseling and medication that feel contrary to your faith.

Does your doctor agree ibuprofen may be responsible for your bleeding, and if has he/she tried a way to support healing without being extreme? Has anyone discussed how you could incorporate Biblical principals into a focus on managing the impact your health is having on you?

@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.

@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?

@shellylynn123 , thanks for sharing your experiences of life with D/L, like you said ours are similar. I think my fear/anxiety of recurrence is a perfectly rational emotion given the negative impact on my life a bleed causes. As yet I haven't sought professional counselling. I try and focus on how fortunate I am to receive the care that keeps me alive when the bleed occurs, and the resource available to find the source - post bleed. I am also mindful ( in the U.K.) the DBE procedure is used for patients with cancer, which thankfully I don't have. I try and keep as fit a possible so that when/if I present with another episode my heart is strong, and that I don't develop comorbidities. Causation - congenital or acquired ? I don't know, I am 55 YO, stopped smoking (20) years ago, stopped alcohol 2023. Pescatarian diet since 2018 but now eat meat to counter anemia. always have run/swim/cycle, and continue to do when HB levels allow. Does stress play a part ? The consultants that I have met are unable to give me the answers, and unable to give any advice on avoiding recurrence apart from 'live healthy lifestyle' I am due to see consultant about medication which may reduce severity/episodes, has your health team suggested medication? I hope you have a good day today, and enjoy the weekend. ATB.

@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.

My experience was almost as your daughters. I passed out onto bathroom floor. came to some how and was soaking wet, reaction, and had the dry heaves and was bellowing like a elephant. My wife drove the car onto our deck and I don't know how I got up from the floor and made it out there. ER put me in the hospital, got not sure how many units of blood and fluids, was strong again and 3 days later sent me home. 2 days after that my wife was out , came home and found me passed out with my eyes rolled back, whites only showing. Ambulance brought me to hospital. I had the swallow the camera test, put radio isotopes in my blood and xray that to try and find the leak, drank the barium and follow that with xray, after 12 days and 12 units of blood they found the lesion, also had all the different scope tests. They put me in a ambulance and went 100 miles to a larger hospital to coterize the lesion. Due to the severe blood loss, I got a spinal cord injury at c5 c6 and a paralyzed left diaphragm as determined at Mayo Clinic.

@shellylynn123 Checking in to follow up. I thought of you seeing a particular book that has helped me. You mentioned taking the direction of reading your Bible helping with your stress. I love that!

Here is a photo of the book cover, Breath as Prayer. Your experiences in the hospital remind me of how the author describes what brought her to explore combining the two, breathing and prayer. Her approach is also helpful to recall scripture in stressful situations when you may not have a Bible with you.

I would love to hear what you think.

@gerardmartin I am in Southern California. I’m 49 years old and my first episode was when I was 43. The closest hospital that does DBE is about 2 hours away at UCLA. When I had that done they didn’t find anything. They just said next time it happens go to the nearest hospital to get staple and then have an ambulance. Take me to UCLA to do the DBE. I also don’t smoke or drink. I no longer eat fried foods or drink coffee anymore. It’s been 3 years since I’ve drank coffee and it was favorite. They didn’t prescribe me any medication. They basically just said go live your life and when it happens go to the hospital. I do think stress plays a part. Every time it’s happened I was severely stressed. So now I’m stressing over stressing. I am going on vacation this weekend to an area that doesn’t have a hospital that does a DBE and it’s scaring me so much. Anyway, hope you are having a good day too!

My lesion was high up on the stomach and Dr coterized it. Maybe when its down lower they can't do that. Don't know what caused it, took 12 days to find it, no food restrictions. They told me to relax and don't stress over it. I have a blood draw once a year and my hemoglobin is around 13, I'd like it to be around 15. It all lingers in your mind, it was 22 yrs ago. The stress part eventually goes down as time goes on.

@swamp kid, how's your daughter doing? I hope her HB/bloods improve and she feels stronger by the day. Hopefully the clinicians located the source and the repair holds up long term like @yooper1949.
@shellylynn123- I am with you all the way on stressing over stressing , sometimes my head hurts, and I feel absolutely exhausted , lethargic, lacking in energy , I guess it's my body's response to 'it' being on my mind all the time, flashbacks of when it happened /where I was , passing out , waking up, incontinence pads , putrid smell of blood/faeces, trauma of being hospitalised, feeling ashamed, not wanting to see visitors in hospital. Then post bleed there is the progression of tests and further consultations, which are time/energy consuming. All that said I do gather perspective and and feel privileged for the care I receive. My local hospital are my primary care provider and lead consultants. After my first admission they referred me to tertiary hospital for DBE as outpatient, after (3) episodes of bleed, and (3) DBE (anti & retro) they have been unable to locate source, the DBE examinations are planned, therefore don’t take place until (8) weeks post bleed, the longer it is from bleed the less chance of detecting location. My lead consultants are now moving towards suppression therapy medication (e.g. octreotide/lanreotide), this won’t cure, but may reduce symptoms and frequency of occurrence. Simultaneously I have haematologist consultation by tertiary centre to see if I have Von Willebrand Factor (vWF) , which doesn’t cause the bleed but maybe a contributing factor with regards to volume of blood loss. Results awaited. Have a good rest on holiday, and enjoy the weekend.