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?
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Your story sounds fairly familiar. I had esophageal varicies (also a GI bleed) when I was two, which is what lead to finding out I had portal hypertension due to portal vein thrombosis, although the doctors couldn’t say what the cause of the the thrombosis was. I had surgery to stop the bleeding, which I’m not sure what the procedure was but it sound kind of like the Portacaval thing you were talking about. However the incision got infected and had to be left open to drain for 3 days, and the mix of the antibiotics and a line that was monitoring my heart rate cut off the circulation to my right leg and caused compartment syndrome, causing me to lose the muscle that lifts my toes. I also lost all the hearing in my left ear as a result of all the medication.
But now I am 21, I have had 9 surgeries ( a splenal- renal shunt being the last) and many many procedures, and I don’t have any problems with my portal hypertension, or my compartment syndrome-y leg ( I can walk and run, even though doctors didn’t think I would be able to). I wish you the best of luck with your journey, and I hope you find a resolution soon.
Hello. My Daughter Paige is 4, and has had major varices bleeding due to portal vein thrombosis, which went misdiagnosed since birth. she has had several blood transfusions and continued bleeding, as well as bowel bleeding. She has cavernous transformation around an occlusion which goes up both branches into her liver. she is apparently not a candidate for a shunt. She has had a number of interventions including banding, but she has major gastro varices in her stomach as well.
Questions
Where in the world can I get the best treatment for this
I hear that pepermint oil is a stomach irritant, but exceptional for bowel health – what to do?
Are there any foods / supplements etc best avoided / included
please any help or direction with new treatments etc is very appreciated
Hi Andrew,
First of all I want to thank you for your comments and questions. I am always sorry to hear of little people like Paige who suffer from this condition and if we can find better ways to manage all these symptoms then it really is worth it – especially for these kids. It is hard for me to imagine what you have gone through as a parent … I hope and pray she continues to improve!
I am curious to know who said Paige might not be a good candidate for a Rex Shunt? Just because I manage this blog does not make me an expert when it comes to this sort of thing, but I know there are differing opinions out there and it may be worth investigating? I say this because of recent dialogue I have had with a Mom of a little girl who is 16 months old, and she was told the same thing, until another doctor said otherwise. Now I do not know if the little girl I speak of has the same cavernous transformation or not, but she went out of her country to pursue it as the mother herself is a doctor, but not a specialist in this field.
Personally I have used Peppermint Oil and initually I thought it may have been helping me – at least it the bowel department! It turns out that I have to resort to other pain meds to accomplish the goal and at this point would have to say it was not working. I never thought of the peppermint irritating the stomach, as I have not had that happen, but that does make sense as it is quite strong and possibly might have an acidic type response in that area.
As far as foods go, I try to avoid excessive amounts of tomatoes which can be found in spaghetti sauce, chili, or soups. Cabbage, beans, nuts, or anything that can cause bloating or excessive gas can really be painful due to the arteries being corroted in the bowel region from the portal vein. If I eat an excessive amount of whole grains, that really is an irritant to the bowels and I literally can experience pain for more than a few hours at times. Not only do I experience pain, but I am running to the bathroom several times per day which is not convenient at times and along with that I can bleed (I’ll spare you the details and leave this one to your imagination). Everyday for the past several years I take Loperamide (Imodium) as a preventative measure, but when I get severe enough I take more during the day to try to slow things down. There are times when I cannot pinpoint what exactly what food may have set me off, and it can be really frustrating dealing with this as you never know when you will get an attack.
You asked about new treatments? Well I can’t say I have heard of any, however there are some new blood thinners on the market in which I have just started on. I have an underlying clotting condition from an unknown cause, so I am being treated for that, and at this point it is questionable for what I may be covered for in the long run, so I will not say too much until I learn more. It would probably be correct to assume that Paige is on Nadolol (beta blockers) to keep pressure down in case of a bleed, and I would be interested in knowing what dosage she is on given her age? I was just bumped up to 160 mg per day, and I am finding that I am very tired so I may need to cut back depending on my heart rate. In all the people I have spoken with or have come on this blog, it is very common worldwide for them to be on beta blockers to manage the pressure.
I hope some of this is helpful to you, and if not keep asking the quesitions – someone else may have more answers for you on this blog. It’s complicated and by far I have only just begun understanding some of the issues involving the condition.
All the best,
Clint
I really appreciate this site and the comments. It is the first “real” life in put I have read or heard. I am currently waiting for my sixth bleed/ transfusion episode. I say waiting because I have no insurance and no money due to a unrelated disability, plus a family to feed. Epic emergency room and intensive care scenarios are the only way to receive help. I need preventative help like shunting, but need to pay a doctor up front for any visits. Other than being healed by God, I am hoping medicaid will decide to help me despite my income being slightly above their requirements. Too rich to get help, to poor to pay the gallows. I wish everyone here the best of health. Thank you for sharing your journey. I am currently bleeding, it started three days ago. Thank God it is a slow bleed. It is the first bleed after having six varices banded in my esophagus two months ago. Does anyone know if a bleeding varices can naturally clot by its self? Maybe if the bleed is slow enough? I will stay posted over the next few days. Kirk
Hi Kirk,
Thanks for visiting this site. I am very sorry to hear of the health issues you have been having with PH. I can hardly believe that you have gone through what you have gone through as up until this point I have not heard from anyone have more than 3 bleeds since their diagnosis. You must live in an area with good hospitals and you also must be very close to the same in order to get treated as fast as necessary. It is not a good scenario regarding health insurance or lack thereof, and I am sure you don’t need that added stress. I am no expert in health insurance matters, but I am thinking that due to the severity of your case, would not Medicaid overlook the fact that your income is slightly higher than their requirements? Regarding Varices clotting on thier own – I am really not sure whether or not they can actually do that, so maybe someone will see this post and respond to that question? What do the doctor’s say to this, or have you asked them? There is another fellow I know who lives in Minnesota and his situation regarding health coverage is similar in many respects, but he told me that when he is admitted in emergency they will treat him, but anything over and above falls under a separate category. He himself has had 2 direct bleeds from the varices in his esophogas, and he has other complications related to that which mean that he can no longer work or even drive now.
I pray that all goes well with you in the next few days and I look forward to hearing from you soon.
Best, Clint
HI there , i was wondering wether anyone could advise me, my lovely wife has cirrosis of liver, and has today been informed as a result of an endoscopy that she has varicies in the throat , however the endooscopy showed no bleeding, i understand that they havent ruptured or bled yet, the doctor has put my wife on propanolol to prevent bleeding, how likely are they to bleed, she will of course be abstaining from alchohol, my main question is how likely are they to bleed ? im literally worried sick about her, thankyou
Hi Steve,
Sorry to hear of your wife’s condition. If it is any consolation I have had esophogeal varices in my esophogas and the upper part of my stomach now for almost 10 years. I did have a bleed in 2004, but it was in the upper part of my stomach and not the esophogas. Propanolol treatment is the standard worldwide in the treatment of this dreaded side effect, and research all points to keeping the blood pressure down in order to prevent a hemmorage from these areas. I can’t answer how likely they are too bleed, but I do know that if your wife has had a gastroscopy they may have graded the varices on either a scale of 1 to 4 (US standard) or Canadian on the scale of 1 to 3 for the likelihood of a bleed. Through this blog I have met people around the world who have had esophogeal bleeds themselves and survived, so there is hope but it would all depend on how fast one makes it to a emergency facility, and whether or not there are other complications. As you likely may know the standard treatment for a bleed is to try and stop the bleeding first, and then banding is used in order to prevent the varices from subsequent or future problems. I would be interested in knowing the dosage of propanolol your wife is on, and also whether or not she is on a drug called Pantoloc or a similar product to combat stomach acid which can have an adverse effect on varices. See link for details: http://en.wikipedia.org/wiki/Pantoprazole
I hope this helps? There are several articles and comments on this blog which I hope makes dealing with condition a little easier. If you have a good gastroenterologist he/she will likely be up to speed on much of the treatment protocol. If you have any further comments or questions – I would only be too happy to help you out. Wishing you and her all the best for the future.
Clint
My son is ten. He was born with both heart and liver disease. We did not find out about his liver until he was three years old. At that time he vomited three golf ball size blood clots. When they went into band, he had six varacees. Long story short….they did a twelve hour exploratory surgery. He has portal vein thrombosis, splenic vein thrombosis and has had a splenectomy. He takes daily antibiotics for that. They put in a portal caval shunt. It was amazing, absolutely no problems until September. I noticed he was pale. We went to the pediatrician. They ran a hemoglobin on him and it came back 4.3. (normal is between 11-13). We went by ambulance to children’s hospital. They gave him three units of blood as he lost 2/3 of his. The did some banding and found three varacees. They were only able to band two. They discharged us a week later. Two days after being home, he threw up blood and we got another ambulance ride. The third varex ruptured. They took a look at his shunt and found it was closed. The pressure was to high in his vena cava which was causing the blood to pool in the shunt. So now we are working on lowering his pressures in the cava and he is due for a new shunting surgery in December. His case is extremely rare and complex. We are at one of the best hospitals in the nation. I just pray. All day.
Dear Stephanie,
Thank you for your post regarding your son. So saddened to hear of your son’s condition. Please know that besides myself there are others who prescribe to this blog whose children have either gone through or are currently experiencing a difficult journey with their child’s health right now. There are also those who will pray for you and your son – so I hope you take solace in that fact. Please feel free to post an update if you have any questions and I will do my best to answer you if I can, and if not point you in the right direction.
Thoughts and prayers,
Clint