Of Dieulafoy’s Lesion, Diagnoses and Doctors

InUpdate: The current (November 2014) hypothesis among my doctors is that whatever they were called in my past posts — Dieulafoy lesions, Cameron’s erosions, or bleeding ulcers — all these bleeds have their source in the portal hypertension which comes from cirrhosis which is caused by my auto immune system attacking my bile ducts, that is, my primary biliary cirrhosis.

one of my posts last month, At Risk for Esophageal Varices and I Nearly Bleed Out from a Gastric Ulcer: How Weird Is That?, I raised these questions: can a burst esophageal varice adjacent to the cardia be mistaken for a spurting gastric ulcer? Is it really possible to have such an awful gastric ulcer and no abdominal pain?

I’ve since had a follow-up endoscopy, this one by my hepatologist, and will have another in a month’s time when the clips that the GI used in his repair fall off. They obscured the full view of what the hepatologist thinks may have been neither a gastric ulcer nor an esophageal varice but something else altogether: a Dieulafoy’s lesion.

So I was a just little bit right, or not altogether wrong. My gut instinct — that I couldn’t really have a gastric ulcer — may prove right, but I got caught up in the either/or fallacy: either ulcer or varices, never knowing there could be other possibilities, like this thing called Dieulafoy’s lesion.

It isn’t surprising that a Dieulafoy’s lesion could be mistaken for an ulcer, expecially when it is spurting blood.

A Dieulafoy’s lesion is an “uncommon cause of major gastrointestinal bleeding”

caused by an abnormally large-calibre persistent tortuous submucosal artery. . . The artery protrudes through a solitary, tiny mucosal defect (2-5 mm), commonly in the upper part of the stomach. It may rupture spontaneously and lead to massive bleeding. It has been suggested that the thin mucosa overlying a pulsating artery is eroded progressively by the mechanical pressure from the abnormal vessel.

So it isn’t a disease or chronic condition. It’s a mechanical failure.

Dieulafoy’s lesions and gastric ulcers can be fixed the same way. If the fix is the same, does it matter whether the problem is a Dieulafoy’s lesion or an ulcer?

I think it does because if it is a lesion and not an ulcer, I don’t have to take drugs to inhibit the development of ulcers, and I don’t have to avoid aspirin, ibupropen, and a host of other painkillers, or make dietary changes. I don’t have to worry about an ulcer recurring, either.

So why did the GI see one thing and the hepatologist another?

I’m not sure, but I suspect what we have here is another example of the simple fact that some doctors are better than others. I know there are people who don’t question doctors because they assume anyone accepted into medical school and who makes it through the training must be pretty bright. That stands to reason.

And yet. . . have a look at the night sky. All stars are bright, but some are a lot brighter than others. That might bear remembering if you have your doubts about a diagnosis.

Recognizing a Dieulafoy’s lesion depends on “awareness of the condition and experience in endoscopy.” Experience comes with time, but awareness — well, that seems to me what separates the good from the best.

Had the GI considered Dieulafoy’s lesion as an alternative to an ulcer, then I would assume the next step would be to consider what was known about my case and compare it to what is known about these lesions.

Here are some distinguishing characteristics of Dieulafoy’s lesions:

  • The most common presenting symptom is recurrent, often massive, haematemesis associated with melaena (51%).
  • Characteristically, there are no symptoms of dyspepsia, anorexia or abdominal pain.
  • Initial examination may reveal haemodynamic instability, postural hypotension and anaemia. The mean haemoglobin level on admission has been reported to be between 8.4- 9.2 g/dl in various studies. The average transfusion requirement for the initial resuscitation is usually in excess of three and up to 8 units of packed red blood cells.
  • Approximately 75% to 95% of Dieulafoy lesions are found within 6 cm of the gastroesophageal junction, predominantly on the lesser curve.
  • A history of NSAID [nonsteroidal anti-inflammatory agents/analgesics] or alcohol abuse is usually absent.

 

Check, check, check, check, check: all true for me.

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10 thoughts on “Of Dieulafoy’s Lesion, Diagnoses and Doctors

  1. Christina, First I will question your care. You were in the hospital over one month, given 50 units of blood, and THEN they decided to do something??? If you should experience this again, tell the ER you had Dieulafoy’s right away.
    I was told it probably would not occur again but in my case it did. In retrospect, I blame chewing tobacco; I did not spit but swallowed the juices. The doctors this time blamed alcohol, but I cannot say one way or the other. I notice no changes to my general health except now I have A LOT of acid, which is being treated. I didn’t notice this before.
    Complete organ failure would precipitate many health issues as your body was short of oxygen for so long, in my opinion.
    I would not be concerned with a repeat of the Dieulafoy’s as they say it is very rare. Rather, concentrate on current health issues and think positively. Also avoid all the nasties: tobacco, alcohol, and etc. if at all possible. I know this not much help; I would guess you need a team of specialists.

  2. Christina, i have no idea what to tell you. I have never heard of someone living through such a horrible thing. Perhaps some of my readers can help. Best wishes.

  3. Hello, my name is Christina and I live in Southern California. In 2010 I found myself running to the bathroom one afternoon for what I thought was the need to use the restroom. I collapsed feet from the door and proceeded to drag myself the rest of the way because my legs would not work. I felt myself having an accident. Not knowing that I was bleeding until it started coming out of my mouth like the Exorcist. I was home alone without a phone and stuck on my bathroom floor. For 30 minutes I thrashed and banged my head into the wall and the bathtub in order to stay awake till someone got home. They called 911 and off I went to the fight of my life. I will not go into all of the small details but over a month later 50 units of blood and complete organ failure I was finally taken to surgery. I had two dieulafoy’s. I need to know how life is after I have so many health issues now. HELP

  4. I was released from the hospital 40 hours ago after suffering through a SECOND Dieulafoy’s. I am 62 now and the first one occurred 11+ years back. Symptoms this time developed much more rapidly than the first. If I ever have another black stool I will not wait to see if I have another. Results of blood loss cause such agony I never wish to experience again.

    I was fortunate to have ‘things’ fall into place in a timely manner. Another hour or two could have been much more life threatening. Also, the Dr. was able to find and repair on the first attempt. ( Previously four attempts at two different hospitals).

    I was advised to decrease alcohol consumption which I did for awhile. But I returned to overindulgence and believe this was a contributing factor for several reasons. Sometimes my stupidity is unbelievable!

  5. If there is anything good to be said about a Dieulafoy’s, it is that it is a one-off—a structural anamoly, period, not secondary to any other condition. So if you are “lucky,” then that’s that and it is over. (My hepatologist first thought that was what I had [since 8 mos previously I had had no varices] was a Dieulafoy’s; he has since revised his thinking).

    I wish I had had a Dieulafoy’s!

  6. 3 weeks prior to this post, I had sudden symptoms of shortness of breath, pale appearance, and all of the signs associated with a GI bleed along with profuse and unexplainable sweating. I immediately called 911 and, after several tests in my local hospital in Key West, FL, my hemoglobin dropped to 6. I was fighting for my life and, after 15 pints of blood was transfused into my near lifeless body, I was taken via helicopter to Baptist Hospital in Miami where I underwent extensive testing, a colonoscopy and 2 endoscopys and there was nothing found to explain the near fatal bleeding. I was told that this meant that the diagnosis was a Dieulafoy Lesion. Does this sound accurate and can anyone give me any pointers. I am 31 years old and, quite honestly, petrified about having to repeat such an awful, nearly fatal experience.

  7. I was told no. I should revise this post because I went on to have two more bleeds, and then doctor decided I probably never had had a Dieulafoy’s but a burst esophageal varix instead, or perhaps a hybrid, since there is some speculation that the cause of esophageal varices — portal hypertension — can also cause dormant Dieulafoy to burst. So rare — just not enough cases to generalize from. Good luck. Keep your blood within ;)/.

  8. Hello my names kelcie,
    Last year I had a dieulafoy lesion fallowing an abdominal surgery I had. I was transferred to icu until the GI when endoscopicly and fixed me. Never went to follow up appointments like I should have so I never got to ask “can this happen to me again” do u happen to know I it can happen again?

    Thank you

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