Barrett's esophagus & intestinal metaplasia

[lucy_love]

Hi everyone

I was just diagnosed with barrett's esophagus and intestinal metaplasia (IM) and I am really freaked out! Does anyone have either?

Let me start from the beginning:

I just turned 25, but I have had digestive problems my entire life. I am on Amitizia 24mg because I do no have regular bowel movements. In addition to "number 2" problems I cannot burp. Gas gets trapped in my chest and is very uncomfortable. The only way to relieve the gas is to gag myself which produces a giant burp. Additionally I always have stomach pains, upset stomach, gas bubbles, acid, etc.

Flash forward to 2 weeks ago: I go in for an endoscopy... that I have been putting off for years... the Dr. takes a couple biopsies and performs a dilation. When I wake up he sees a lot of acid and possible Barrett's. I get a phone call last week with the results saying I have a lot of acid, inflammation, and intestinal metaplasia.

I live in GA for school but my family is in FL. My family has an extensive list of digestive issues so I wanted to go to my families gastro doctor that we trust. The Dr. did not want to discuss detail because he wants to see me in person- I am going back end of July to discuss how to treat it etc. I AM FREAKED OUT

I am REALLY nervous because I am pretty young to have this amount of acid and damage and also because my dad and grandma have a plethora of stomach/esophagus/digestive issues. Obviously I am most concerned he is going to tell me I have cancer because IM is a pre-cancerous disease... and from what I understand from google is that IM is more advanced (worse) than Barrett's. Additionally, my grandfather has esophageal cancer.

Any advice from someone who has this or knows someone would be greatly appreciated. Until I go see my doctor in 4 weeks I am going to be a nervous wreck!

The only positive is that I now know what is causing my digestive issues.

Thank you

p.s.
I hope I am posting to the right forum, if this would be better off in another forum please let me know

 

[Pea-n-Me]

First, try not to freak out. I know it's scary, but think of it this way - you've been given a "warning" that many don't get.

What this may mean for you is that now you need to be hyper vigilant about monitoring so that if this condition turns cancerous it will be caught at an early stage where it will be highly treatable.

With that said, I know the word “cancer” is scary, but keep this in mind:

People who have Barrett's esophagus have a 30 to 40 fold increased risk of developing esophageal adenocarcinoma as compared to the general population. Still, the overall cancer risk in patients who have Barrett's esophagus is low. The results of multiple studies of patients who are being followed by a doctor for their Barrett's esophagus indicate that most patients with Barrett's esophagus (90-95%) DO NOT develop cancer during long-term follow-up. In addition, autopsy studies have shown that most patients who have Barrett's esophagus live their lives without ever developing Barrett's associated cancer and die of other causes.

I’m not sure where your intestinal metaplasia lies, but location makes a difference:

According to the American College of Gastroenterology guidelines, Barrett's esophagus should now be defined as "a change in the ESOPHAGEAL epithelium (lining) of ANY LENGTH that can be recognized at upper endoscopy and is confirmed to have intestinal metaplasia by biopsy." This definition makes the distinction between the stomach lining that can be present in the esophagus and the abnormal specialized intestinal metaplasia. The new definition also emphasizes that the intestinal metaplasia must be esophageal in location. Many patients have intestinal metaplasia at the very top of the stomach, just below where the esophagus ends (intestinal metaplasia of the gastric cardia). Intestinal metaplasia in this location is NOT classified as Barrett's esophagus. At the present time, because specialized intestinal metaplasia is the only lining known to have an increased risk of developing esophageal cancer, it is recommended that only patients who have specialized intestinal metaplasia of the esophagus need to undergo endoscopic biopsy surveillance (cancer surveillance procedure) to detect esophageal adenocarcinoma, if it develops, at an early and curable stage.

If you don't know where it is, ask your doctor for clarification. If it's not in the esophagus, you may not have need to worry much at all.

If it is, one option you have is getting another opinion from a GI Oncologist at a leading oncology center. See what they say as far as treatment and monitoring go, and plan to check in every year or two to make sure you're on the right track and not missing out on any new treatments or tests, etc. Nobody will care about this as much as you do, so you may need to be assertive about it on your own behalf. You also don't need "permission" from anyone to do it. Insurance should cover second opinions.

HTH. Best wishes.

http://www.barrettsinfo.com/content/1_what_is_barretts.cfm

 

[PatsMom]

I've had Barrett's for years and once you get over the whole pre-cancerous condition panic, you just deal with it. I take Nexium daily and for a little while I had an endoscopy done once a year both for the Barrett's and because I've had peptic ulcers off and on for most of my life.

I am now up to going two years between scopes because my Barrett's is pretty stable.

Sounds like you have some other GI problems going on as well. Good luck and I hope you get encouraging words from the GI doctor you trust. But I would seriously start thinking about setting up a relationship with the GI near where you live most of the time. The waiting to talk over test results is much worse than dealing with the results once you have them.

 

[lucy_love]

I’m not sure where your intestinal metaplasia lies, but location makes a difference:

If you don't know where it is, ask your doctor for clarification. If it's not in the esophagus, you may not have need to worry much at all.

If it is, one option you have is getting another opinion from a GI Oncologist at a leading oncology center. See what they say as far as treatment and monitoring go, and plan to check in every year or two to make sure you're on the right track and not missing out on any new treatments or tests, etc. Nobody will care about this as much as you do, so you may need to be assertive about it on your own behalf. You also don't need "permission" from anyone to do it. Insurance should cover second opinions.

HTH. Best wishes.

http://www.barrettsinfo.com/content/1_what_is_barretts.cfm

Thank you SO much for all of the information!

You gave some good ideas for questions to ask when I see my doctor. My parents are going to the appointment with me because I will probably be a ball of nerves and forget to ask questions.

Do you who the leading oncologist is? Maybe there are a lot? I will of course go to google and research but I didn't know if there was a well-known doctor that is famous for this type of stuff.

Again, thank you for the kind words and information

I've had Barrett's for years and once you get over the whole pre-cancerous condition panic, you just deal with it.

Sounds like you have some other GI problems going on as well. Good luck and I hope you get encouraging words from the GI doctor you trust. But I would seriously start thinking about setting up a relationship with the GI near where you live most of the time. The waiting to talk over test results is much worse than dealing with the results once you have them.

Thank you. Yes, I am a little over the panic but it will not go away completely until I see the doctor. He has me on Prilosec until I see him and once I see him we will discuss further treatment.

I do have other issues, I do not know if it is related to the IM, I guess I will find out when I see him in a few weeks. You are right, I really do need to find a doctor here in Atlanta. It's hard because I really like my doctor, he has good bedside manners, takes his time, talks to me like a person, and has done wonders for my dad and grandma. I know there are other great doctors out there... I just do not do well with change

 

[Pea-n-Me]

There are many GI oncologists who would fit the bill, I'm sure. I'm unfamiliar with your area but you could look at a good cancer center there or find one out of state that you're comfortable with. It doesn't have to be the best doctor, persay, but go to the best center. They work together and even with other specialists in the area on cases. Here is a link to the one I'm most familiar with to show you how it works. http://www.dana-farber.org/Adult-Care/Appointments-and-Second-Opinions.aspx Good luck, Hun.