At Risk for Esophageal Varices and I Nearly Bleed Out from a Gastric Ulcer: How Weird Is That?

Update: 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.

If you’ve read any of my posts on primary biliary cirrhosis (PBC), you were probably surprised by yesterday’s post that there wasn’t some sort of medical muddle involved. Wonder no longer: there was. It’s just that my emphasis was different so I left it for today.

I’ve written about being at risk for esophageal varices as a result of having PBC. These are swollen veins (like varicose veins), caused by portal hypertension (itself caused by cirrhosis [in the case of PBC — there are others. Click through to a site devoted to patients’ experiences with it]) in the esophagus. Left untreated these could “burst and bleed into the gut.”

But I had an endoscopy just this past January that showed only a trace of varices, and in such cases, 96% of people are trouble-free for at least 1-2 years (then they do another scope).

Of course, that means 4% of people aren’t.

So as soon as I regained consciousness in the ambulance, I alerted the chief EMT to tell the folks in the emergency room about this. And when I got there, I told them myself.

I will refrain from elaborating on how it feels while being transfused to have to repeatedly explain primary biliary cirrhosis and spell Urso Forte [the drug I take for it] to the ER nurses, and later my floor nurse and abdominal ultrasound technician.

However, following the endoscopy performed there in the ER trauma room, the GI who did the procedure reported that I lost enough blood to require four transfusions not because any esophageal varices burst, but because of a “gastric ulcer spurting blood.” He repaired it with three hemostatic clips and put me on pantoprazole.

But how weird is that? To be at risk of burst esophageal varices and have a gastric ulcer burst instead?

I reviewed my endoscopy report (high marks to the GI, who actually gave me a copy of my own medical report!) and found the location of the ulcer to be the cardia. Googled that, and discovered it is right where the esophagus becomes the stomach, and, in fact, for many years there was debate as to which organ it belonged to.

Now then, there is a new kid on the block at the hospital: the hospitalist. This person is sort of in charge of patients who come in through the ER and whose regular doctor doesn’t admit or have any role in their care. Like me. It took me two days to get someone to tell me who was really in charge of my case: the GI who did the procedure, or the hospitalist.

When the hospitalist visited me, I explained about my surprise that my bleed was gastric and not related to portal hypertension [PBC]. I told him that I didn’t have a local GI, but that I was under the care of a hepatologist at the UAB med center.

So the next day he returns, and says, “Good news: you don’t have to have a liver transplant.” I thought yeah, duh, but let him continue. He told me he had set up an appointment with the hepatologist who would do another endoscopy. And I said that sounds great, but what about this report from the GI deeming the cause of the bleed to be a gastric ulcer? The poor guy looked confused. I suggested he go back and have another (an initial) read of  my endoscopy findings.

But the hepatologist’s office and I agree that I should be seen by him. I have so many 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? Can portal hypertension cause a gastric ulcer? Will this happen again? And will I have no warning other than feeling steam-rollered before it does?

And just how weird is it, if it was a garden variety gastric ulcer, for this to happen to a person who has to worry about bursting varices?

Stay tuned.

4 thoughts on “At Risk for Esophageal Varices and I Nearly Bleed Out from a Gastric Ulcer: How Weird Is That?

  1. Need help, your sure if anyone has answer, can’t seem to find anyone who can…Mom is 60, was told aug, she has cihhrosis of the liver, due to prolong use of Ty#3, and with her diabetes med, well, esphogeal varices, gastric varices, and ab varices, she has portal hyptension….enlarged spleen, low inr. count..,.she is internally bleeding to the point that she has had nearly 28 units of blood since Feb/10…she is now down to 76, this her cbc count, were in Canada…anyways…she is losing blood, continuously, last wk 82 (2 units), the wk before 91 (2 units), the wk before 85 (2 units) this is continuly…They say there is nothing that can be done, what I want to know is why, I understand that she has cirrohisis, got that, and everything else….So what, does this mean that they are just going to keep losing blood, and keep getting transfusions, well, shit there has to be some doc, or someone that knows what to do…i mean, is she just going to internally bleed to death….and that will be that…and how long can she go on like this…it took them 4 yrs to figure this out…Her family doc, is of no help, just says you are doing great …..bullshit….it is taking the full of my ass to keep on top of them at the lab, cause she has anitgens, and well they have to spend it to ottawa, and then back which takes up to 3 days, to get here…i am so upset, at times, cause no one seems to know anything…..have any ideas as to what i am to expect….or who knows what all this means? She has been diabetic for 24 yrs, she was on pills, now insulin….and other meds or control portal hypertension, 3 iron pills a day, pantoloc, angina pill, some other diabetis meds…fentanyl patch of pain…..what can we do? Where can I turn….? I am trying to understand, what to expect, what i read well, says meds or glue, or band them, but they won’t do any of this with, and won’t explain why….what can we do.? Please Help Me……a daughter in need of answers…..

  2. I am so sorry for you and so frustrated that with all the medical professionals you have seen with your mother that you have no information, no answers, no help finding out how to get help — and I truly regret that I have none for you either. I’m a patient, what little I know is from researching what I have experienced.

    I assume your mother is in the hospital if she is bleeding internally and getting transfused. You need to find some type of patient advocate there. The doctors aren’t the first I go to for help with this. I’d try to find a social worker. Failing that, try the hospital’s telephone operator or a volunteer at guest services — someone has to know who you can ask for help in understanding what is going on.

    If the bloodwork has to go out of town to Ottawa, is there any way your mom could be moved to a larger medical center in a large city, like Ottawa. It may be the case that the doctors aren’t answering your questions because they are at the limit of their experience and expertise, but don’t want to admit it.

    Is your mom on a transplant list? Again, I haven’t a clue how that works, but if she is in liver failure, that may be the only answer.

  3. Pingback: PBC Bleed 7. The Vesuvius Within Me. Crashing in the Same Car. | Havealittletalk's Blog

  4. Me gustó mucho tu artículo. Hay algunas cosas que no sabía y que voy a hacer para tener mejor salud en mis piernas. Gracias y saludos.

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