The subject of esophageal varices is by far the most dangerous aspect of portal hypertension. Bleeding esophageal varices unfortunately is something some reader’s have already experienced, and no doubt do not want to experience again! Thankfully though there are endoscopic treatments and medications that can reduce the risk so there is hope.
Esophageal varices develop when normal blood flow to your liver is blocked by a clot to the liver (portal vein thrombosis). The blood then backs up into smaller, more fragile blood vessels in your esophagus, and often in your stomach or rectum as well, causing the vessels to swell. When the vessels swell there is risk for a rupture and subsequently bleeding will occur.
As mentioned above there are a number of drugs and medical procedures available to stop the bleeding. Many of the drugs, such as some of the one’s I am on, are used to effectively prevent bleeding. From what I understand about 1/3 of people with esophogeal varices can bleed.
Some of the symptoms of esophogeal bleeding range from mild to severe with some being more obvious such as vomiting blood, black, tarry, or bloody stools, and in more severe cases shock. Less obvious signs may be decreased urination from lower blood pressure, excessive thirst, or lightheadedness. If you or someone you know is experiencing any or all of these symptoms please seek medical help immediately!
In December of 2004 I experienced a bleed, however it apparently did not originate from my esophagus but from the varices in my stomach. A bleed of this nature is referred to in medical terms as a upper GI bleed (gastrointestinal bleed). At the time of my bleed I came very close to having a blood tranfusion, but thankfully I did not lose enough blood for that to happen. Due to advances in medications and endoscopic procedures, an upper GI bleed is commonly treated without surgery. As in my particular case I am on a drug called Nadolol which is a common beta blocker prescribed to keep blood pressure low and prevent bleeding from varices such as these, or the esophagas. Doctor’s also prescribed a drug for me called Pantoloc which reduces excessive acid in the stomach, thereby reducing the risk of acid wear on the varices in order to prevent bleeding.
When emergency treatment becomes necessary, blood and fluids are given intravenously to compensate for any loss. Efforts are then made to stop the bleeding, and an endoscopy is performed to locate the actual site of the bleeding.
Although there are columns of varices in my esophagus that are classified as grade 3 (highest likelihood to bleed), at one time my doctor’s considered one of two methods which are usually performed on patients with ruptured varices. One method involves banding (band litigation) whereby a rubber band is used to tie off the varices, and at some point the varices will fall off or “slough off” in hopes to alleviate the danger. In my case doctor’s decided against this procedure as they felt I would continue to bleed from the site which eventually would become ulcerated. Because I have to be so highly anti-coagulated due to my underlying clotting condtion, banding is not possible as I would continue to bleed from the site where the varices fell off.
Another method used to treat the condition is called sclerotherapy. A drug, which I was told is somewhat like “Crazy Glue”, is injected into the bleeding vein, causing it to constrict (narrow). Sclerotherapy slows the bleeding and allows a blood clot to form over the ruptured vessel.
Bleeding esophageal varices can result in a very large amount of blood loss and many units of blood may need to be transfused. Once the bleeding is controlled, treatment is done to try to prevent additional bleeding in the future. In some cases, more banding is done to try to eliminate the varices. Another consideration in severe cases can be the creation and insertion of a shunt. A shunt could be best described as a pipeline or tube. (At one time I was also considered as a candidate for this type of procedure, but it was decided that the danger would be far too great for me due to my underlying clotting condition).
A Transjugular intrahepatic portal-systemic shunt (TIPS for short) is a wide tube implanted within the liver so that blood is able to flow more quickly. Usually blood must trickle through liver tissue in order to travel from the veins below the liver (the portal veins) into the three veins that drain the liver from above (the hepatic veins). This “trickling” is too slow when the liver is scarred – usually in the case of cirrosis.
A TIPS procedure is usually performed by a radiologist. It involves placing a catheter in a vein in the neck and guided down through the liver creating a pipeline for blood flow. At the end of the catheter a “stent” or wire mesh is placed within the liver to allow blood to flow more easily through the portal vein. This treatment can reduce the excess pressure in the esophageal varices, and can decrease the risk of bleeding in the future.
Portacaval shunting is another option, but as I understand has been largely abandoned since the advent of TIPS. Portacaval shunting is a major operation, requiring an abdominal incision. Blood flow is diverted around the liver, usually creating a connection between the portal vein and the inferior vena cava (IVC). The IVC is the large vein that carries de-oxygenated blood from the lower half of the body into the right atrium of the heart. Blood flow is diverted around the liver, usually by creating a connection between the portal vein and the inferior vena cava. This reduces pressure in the veins which drain the liver, decreasing the dilation of variceal veins in the esophagus, which otherwise are highly likely to rupture and bleed. Portacaval shunting is generally reserved for patients who have failed TIPS.
If a TIPS procedure or other shunt procedure is required, some blood will pass through the liver without being totally detoxified by enzymes in the liver. Natural waste products in the blood can accumulate if the blood is not detoxified by the liver, and because of this some people who have had a TIPS procedure develop symptoms of confusion, called encephalopathy. There is medication though can reduce symptoms of encephalopathy.
Lastly … at least 50% of people who survive bleeding esophageal varices are at risk of more bleeding during the next one to two years. Just want to note that this topic by far is one that provokes strong emotions for me, as it is not the most positive aspect of portal hypertension. Nevertheless though it is one that needs to be discussed. What is your story?
I have oesophageal varices and ignored for two weeks that I was vomiting fresh blood and had melena. I awoke one night at about 3:00 am and vomited blood in the bathroom whilst sitting on the toilet and vomited again as soon as I had crawled back to bed. I decided then if I did not call for help, I probably wouldn’t see the morning.
I am never one to ask for help, but I did need it. I was admitted to the ICU that night and had 6 pints of blood and a unit of platelets transfused.
I don’t know how I got myself into such a mess, and it doesn’t really matter as my liver is shot. But no-one will tell me how bad. I talk loads of supplements, including milk thistle and vitamin K2, but I still do not eat well. My ascites has gone but I get strange skin rashes which the doctors can’t explain. These can last months or years, but don’t bother me.
I have 2 grade 1 varices after the rest were banded. This was very successful – although I never saw the rubber bands in the poop!
After my experience I am glad to be alive. They won’t tell me how long for (it is now a year since I was in ICU), but I feel as if I have at least another year. There has been no change on ultrasound or blood tests.
Good luck to all of you.
Tony from Cambridge UK
Hi Tony,
Thanks for your comments. Your journey has been a difficult one that is for sure!
In response to not knowing when the next bleed will be, I don’t think any really has a prognosis, but I do know of people who are still living after a bleed of this nature. Although I came close to being transfused with blood back in the later part of 2004 after a bleed in the varices at the top of my stomach, it has been several years since that episode and I am thankful for the life I have had since then. Other people I know who have bleed from esophogeal varices are also doing well after serious bleeds several years ago. I would suspect that you are on thinners and also a beta blocker to slow down your heart rate, so you are getting what would be the standard treatment for post esophogeal bleeds. You said your liver is shot, so that is a dimension that could play into your long range health, but I am not a doctor so I can’t even begin to tell you what to expect for the future, and I am not even sure the doctors would know that? You stated you were on vitamin K2 and milk thistle and I was wondering if that was prescribed by your doctor or what? I was under the impression (and I could be wrong) that Vitamin K2 acts like a thinner of sorts, and I thought that if you were on prescribed thinners such as Warfarin (coumadin) that it may be too much for you system? With Coumadin, most people have to have their blood tested on a regular basis to monitor the I and R levels (see: http://en.wikipedia.org/wiki/Prothrombin_time).
Thanks again for your comments – they are always welcome.
Keep fighting,
Clint
First, can I wish everyone well. Sadly. as I know because I have cirrhosis, and I am a medical doctor and I have research doctorates, this is not fun. I wish I could live my life again (and how many of us would wish that!).
We have to try to reduce our portal pressure (and propanol is good here). Banding is good, but that needs to be done in clinic.
I also believe in drugs such as milk thistle, and various others. Please email me as a friend, we need to support each other.
Tony Whyte MB PhD (aw352@cam.ac.uk).
Hi Tony,
Thank you for your post and welcome to this blog. As per the email i just sent you, I would welcome your perspective and findings on the benefits of Milk Thistle or other health related products that may benefit fellow sufferers of PVT.
Keep fighting,
Clint
My family has been doing research for me …. as I have been in the icu with my 3 year old son who was diagnosed with hepatoportal schlerosis and age 1. most recently he had 2 bleeding episodes from esophogeal verisies. Transfusions and Endoscopys were done and the banding procedure as well as schlera therapy. I too want to give my son the best possible care and outcome from this awful disorder. I walk on eggshells with every move he makes…. he is extremly active and although i tell him about his “special belly” he still runs around like a true boy. This past episode of bleeding was his first and I was so scared at the amount of blood my son was vomitting. I noticed chicago childrens hospital mentioned a few times… any insight into how that my help? Currently he is seen by GI specialists out of LIJ in new york and MT. Sinai in NYC. just want to help my boy….. and know that we can somehow manage all this………. thank you for your time. TAra
Hi Tara,
So sorry to hear of your little guy’s condition – I can only imagine how much stress this is right now.
Dr. Jean Emond at New York Presbyterian Hospital comes highly recommended if you want to try to hook up with him. You may contact him at:
NewYork-Presbyterian Hospital/Columbia
PH Room 14C
622 West 168th St
New York, NY 10032
Phone 212.305.9691
See credentials: http://asp.cumc.columbia.edu/facdb/profile_list.asp?uni=je111&DepAffil=Surgery
Also Dr. Superina at Childrens Memorial Hospital in Chicago is gaining notoriety for his success in helping children with Portal Hypertension by performing the Rex Shunt Procedure. See: http://www.portal-hypertension.com/the-rex-shunt-procedure-for-portal-hypertension/
Dr.Riccardo Superina
2300 Children’s Plaza
(707 W. Fullerton Ave.)
Chicago, IL 60614-3363
Call 1.800.543.7362 (1.800.KIDS DOC)
Phone 773.880.4000
See credentials here: http://www.childrensmemorial.org/findadoc/bios.aspx?id=993
I hope you get some answers? In the meantime I hope you don’t mind but I will pray for son. Please send an update on his progress and if you have any further questions – I would be only to happy to help.
Take care,
Clint
Clint…… thank you so much for your prayers, that means most to me……. I will certainly look into all the information you provided for me…… your site is extremely resourceful and I want to thank you for all your knowledge as well as writing back so quickly. I will surly update you on my sons progress.
Thank you from the bottom of my heart.
-tara
We are currently at U of Minnesota uder care of Dr Acton. My son is age 12. He was diagnosed with Portal Hyper Tension at age 10. He was banded 3 times since Dec 2009, the last time being fall of 2010. He is now bleeding in the stomach, which does not respond to banding. Dr Acton has preliminarily recommended a Rex Shunt. He still needs to do an MRI and ultrasound prior to making an official recommendation. My son is a twin that was born at 35 weeks, so he had an IV in the belly button which is what they presume caused the eventual scar tissue/blockage. He has no other known medical issues. We are of course very worried about the surgery and any long term effects. I don’t think there are any other options. I am happy to have found this site. I am thankful to be here at this facility and have a Dr that trained under Dr Superina. Praying for you all.
Dawn
Hi Dawn,
Thanks for posting! Always sorry to hear of kids who are dealing with PVT, and your son’s bleeding is most disconcerting. Dr. Acton is a trusted doctor in the field of Portal Hypertension for Children, and I am glad you are able to be under his care. Thank you for your prayers for all of the people in need that visit this site. Besides assuring them and giving them a forum to discuss the issue with others, the very least we can do is to pray. I hate to give anyone a PAT answer, but what I believe to be true is that we are all under God’s watchful care, and nothing escapes his view – we simply just need to trust Him. May you be surrounded with His peace today and may your son experience the healing touch of God in his body!
Kindest regards,
Clint
PS I would be happy to put you in touch with other parents who have gone through this with their own child – just let me know and I will email the information to you.
Hi Dawn – We also live in Minnesota and have previously been under Dr. Acton’s care. He is a very skilled surgeon. We still see him for some follow-up care. Our Alex is now 4 years old and he had the REX SHUNT performed on Sept. 8th, 2011 in Chicago, by Dr. Superina. If you would ever like to talk or have any questions I would be more than willing to share any information from our experience that may help you and your son. I was so fortunate to be able to come in contact with other parents on the Portal Vein Thrombosis/Portal Hypertension in Children and Adults Facebook Group. Their support, knowledge and caring helped me more than I can express. Clint’s website has also provided many with so much information. He is constantly seeking out new and current information to share with others as well as keeping us all in his thoughts and prayers. Here is the link to the FB Group I mentioned. There are many people who would be willing to offer their support. https://www.facebook.com/groups/4496581222/ ((HUGS)) from one PVT Mom to another. Amy
Hey Clint,
Great to hear such discussions on a very specific topic. Recently, my father had an episode of bleeding from the esophagus. He lost a lot of blood very fast. Bleeding was stopped by a procedure, am not sure which, but as doctors explained, it sounds like banding.
Doctors, however, have not been able to spot any reason for the same. They did some tests for Hepatitis B and C, and it all came negative. Now they say it might be cirrhosis of liver. I want to know, if there are some other symptoms for cirrhosis of liver, and what might lead to cirrhosis. He has never taken alcohol in his life, and has never been infected by polio.
Abhinav
Hello Abhinav,
Thanks for your post. I am sorry to hear of your father’s illness.
If you haven’t already learned this Portal Hypertension is a very complex condition. In maintaining this blog over the past 2+ year’s I have not heard of other causes for cirrhosis of the liver, so this is a new revelation for me. Sometimes the answers take a long time to realize, but you never know who may be reading this and is able to shed some light on the issue? I have non-cirrhotic portal hypertension, and my liver function is fine, but there are those who contract Hepatitis B and C, or suffer from alchoholism and it the liver is compromised in this regard, it seems as though portal hypertension is inevitible. My specialist is very well trained in all aspects of portal hypertension, and has trained in Spain and Yale specificially, so this is a question I am sure I can ask her. I am scheduled to see her on April 10th, and if you can wait that long I will ask her and get back to you. I will make a note of this right now. In the meantime if you learn the cause maybe you can post another comment so others can learn also.
In an emergeny situation such as the one your father found himself in, doctors may insert what is called a balloon tamponade to stop the bleeding and keep the airway open. When the bleeding subsides they will usually band the varices to prevent bleeding from that particular site or any site that may present as being dangerous.
Like your father I too have never been afflicted by alcoholism, nor have I had polio. I would be interested in knowing what part of the world you are from, and whether or not it is worth mentioning this for others to take advantage of if need be?
Sincerely,
Clint