Barrett's & Intestinal Metaplasia/Prilosec in young adults/teens, please help!

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dreaming gator
New Member


Date Joined Feb 2012
Total Posts : 11
   Posted 2/18/2012 10:28 PM (GMT -6)   
Hi there, first post here!

I am a 25 year old female and diagnosed with IBS-C, GERD, Barrett's Esophagus, and Intestinal Metaplasia (stage 1) and just to round it out I have anal fissures/hemorrhoids. I know I have had this since I was around 15/16 I just never said anything to anyone because I was a teen, and well embarrassed. Finally about 2 years ago after not going to the bathroom for 2 weeks I finally made an appointment. Additionally I do not have typical side effects for acid reflux... I get the acid/puke back up stuff while standing.... never while sleeping and I have NO heartburn. Therefore, while I was still "self-diagnosing" I never thought I had acid reflux because I did not have the normal symptoms and never went to a doc. If I would have gone to the doc earlier some of this could have been prevented.

I had 2 endoscopies done in 6 months and was confirmed to have Barrett's and IM at the first stage. My doc now wants me to have them every 2 years moving forward.

I have concerns because of my age and I can not find much literature or research out there. When my doc brings up the "C" word (cancer) it almost seems as if he is tip toeing around the subject. He has treated one other patient who is young like myself. Most patients are 50+ I trust my doctor, he has done wonders with my grandma and dad... just seems like he does not want to talk about the long term.

Can anyone help answer my questions or share stories or anything for people that are younger with this!

1.) My age and cancer. My doc says the primary concern right now is keeping the IM at stage one and not progressing on... but I am 25... I have a lot of years left :) So I am worried that it is a lot of time to keep it at stage 1, what are the chances in 20 or so years of it progressing?
2.) PRILOSEC! I have read about how it causes bone fractures, mainly in wrists and hips. Again, I am 25 how they heck can I take this the rest of my life? How will I have bones left? Ok I know I am exaggerating but I am serious too. I also feel no change when I take the prilosec, again I do not have normal symptoms, doc said keep taking it anyway.
3.) i guess my main concern is my age and lack of information out there for young adults... everything I find is for 50+ and males for the most part. And long term treatment... can I really take prilosec forver?

Thank you anyone who can help me out! I can be a "worry wart" and I am probably worrying for nothing here! My fiance is concerned which doesn't help me feel any better about this!

Again, thank you in advance.

mudmagnetmum
Veteran Member


Date Joined Apr 2011
Total Posts : 1604
   Posted 2/19/2012 3:16 AM (GMT -6)   
I started a thread for new members worried about Barretts - I'll bump it up for you.

There is a treatment to eradicate the abnormal cells called Halo ablation, but I'm not sure if it's available everywhere or what the threshold is for going ahead, but it's probably worth searching for old threads about that too.

As for prilosec, yes some people do take it for life. I know someone who has been on it all their adult life and they have no symptoms of GERD now and no side effects - unfortunately on Healingwell we do get something of a misrepresentation because all the people who feel good on their ppi don't need the forum much!

MMM
New stuff: GERD, Recurrent cystitis/Overactive bladder
Lifelong stuff: Food allergies/intolerance, eczema, asthma

dreaming gator
New Member


Date Joined Feb 2012
Total Posts : 11
   Posted 2/19/2012 9:50 AM (GMT -6)   
Thank you MMM for the information. I read the thread you bumped. Good info there!

My doc did mention that treatment but as you mentioned there are certain criterion for it and I do not meet them yet. My doc says I would have to get to IM stage 2 in order to receive it. However he said something about how they are working on trying to get it approved for people who are in stage 1 and are young. He said I am the perfect example of why they need to approve it for stage 1 people. He said researches or someone are working on it. I will search the forum for more information on it.

My thing with the PPI is I do not feel any different when taking it... so I find myself asking "why am I taking this if I don't notice any difference and there is risk with PPI" but the doc said I still need to be on it to prevent the progression. You bring up a good point about the misrepresentation on the boards!

Again thank you for the information!

mudmagnetmum
Veteran Member


Date Joined Apr 2011
Total Posts : 1604
   Posted 2/19/2012 11:23 AM (GMT -6)   
You're very welcome. Has surgery been raised as a possibility (Nissen) to prevent further damage to your oesophagus?

MMM
New stuff: GERD, Recurrent cystitis/Overactive bladder
Lifelong stuff: Food allergies/intolerance, eczema, asthma

mudmagnetmum
Veteran Member


Date Joined Apr 2011
Total Posts : 1604
   Posted 2/19/2012 2:41 PM (GMT -6)   
I did a bit of a search looking for info on Barretts in young adults or children -
http://www.benthamscience.com/open/topatj/articles/V003/V004-S1030topatj/60TOPATJ.pdf

This article talks about the genetic link for adults developing adenocarcinoma from their Barretts but says they haven't established a genetic link as yet for children with Barretts. I haven't read the whole article but it seems to be saying similar to the studies on adults - namely that surveillance is a contraversial issue as there is no molecular marker that can pinpoint the at risk patients and also the interpretation of the histology in the early stages is somewhat.... errm...... "wobbly" for want of a better word! (Basically it can be easy to misinterpret or miss altogether when the cells are only just beginning change).

Another study I've posted today on the other Barretts thread suggests that young age at diagnosis seems to be associated with it not progressing - whether that's because it just doesn't, or because there's more opportunity to be "proactive" than when diagnosed later in life, it doesn't discuss.

Hope that's a little bit reassuring............

MMM
New stuff: GERD, Recurrent cystitis/Overactive bladder
Lifelong stuff: Food allergies/intolerance, eczema, asthma

dreaming gator
New Member


Date Joined Feb 2012
Total Posts : 11
   Posted 4/10/2012 11:30 PM (GMT -6)   
Wow, MMM, sorry for the delay. I got kind of bummed out and tried to stay away from here because it forces me to think about it.... if you know what I mean? But tonight I got the urge to come back on here.

Thank you very much for your research, I greatly appreciate it!

mudmagnetmum
Veteran Member


Date Joined Apr 2011
Total Posts : 1604
   Posted 4/11/2012 2:19 PM (GMT -6)   
You're very welcome blush

We all have to 'step outside' from time to time depending on how we are coping - welcome back!

MMM
New stuff: GERD, Recurrent cystitis/Overactive bladder
Lifelong stuff: Food allergies/intolerance, eczema, asthma

GoCats
New Member


Date Joined Apr 2012
Total Posts : 4
   Posted 4/12/2012 1:05 PM (GMT -6)   
Dreaming Gator-

I just found your post today and want to let you know that I am in the exact same boat as you- I am a 32 year old female with GERD, and my recent endoscopy showed short segmented Barretts and some intestinal metaplasia. I'm supposed to have a follow up endoscopy in 1 year. My symptoms are constant mild burning in my chest and sometimes in my throat. When I say constant, I mean everyday about 50% of the day. It doesn't bother my while I'm sleeping. Eating helps me feel somewhat better. This has been going on for about 8 months. I've tried 2x day 40mg Prilosec- did no good; Zantac- helps in the short term; apple cidar vinegar- kind of helped; and now I'm trying 60 mg of Dexilant once a day. My GI doctor indicated that the next step is a nissen fundoplication. He said b/c of my age and b/c the PPIs aren't working that surgery would be indicated. I'm praying the Dexilant works b/c I really, really don't want to have the surgery. The potential side effects seem worse than the heartburn (but I'm scared to death of the C word too, especially since I have 2 young children). I also don't want to be on a PPI for the next 50 years either!

I know what you mean about being bummed about it, I get feelings of depression sometimes b/c I feel like nothing is helping and I'm scared that b/c of my age that I have just that many more years for it to get worse. I'd love to get some more of your thoughts and maybe we can share "research" we've found. When do you go back to the doctor? I'm supposed to try the Dexilant for a month and then do the 24 hr pH monitoring test if it's not helping.

Jamie29
New Member


Date Joined Aug 2012
Total Posts : 1
   Posted 8/16/2012 1:06 PM (GMT -6)   
I found this thread by googling "young people and barretts" and was glad I came across this. I'm also 25, healthy and active and have only experience heartburn since December 2011. I had never experienced it before in my life. After going to my primary care doc and going on meds, I insisted he refer me to a GI dr. Thank God for this because after my endoscopy in May, I found out I have Barrett's. Both I and the doctor were pretty shocked. It's frustrating because I eat healthy and don't fall in any of the statistics. I also haven't been able to figure out what foods trigger this.

WJF
Regular Member


Date Joined Sep 2011
Total Posts : 273
   Posted 8/16/2012 6:33 PM (GMT -6)   
One of our members, dogbones or doggbones?, has told a story of how he reversed his Barrett with anti-oxidant rich food. you may want to search for his thread. No guarantee it will work, but it worthy trying on top of your current treatment.

eh39
New Member


Date Joined Feb 2013
Total Posts : 1
   Posted 2/16/2013 7:02 PM (GMT -6)   
[hi there....
Just wanted to say i have been on defiant for over a year now AND IT REALLY DOES HELP ME!!!!! If i didn't take it i would be in trouble...good luck


I just found your post today and want to let you know that I am in the exact same boat as you- I am a 32 year old female with GERD, and my recent endoscopy showed short segmented Barretts and some intestinal metaplasia. I'm supposed to have a follow up endoscopy in 1 year. My symptoms are constant mild burning in my chest and sometimes in my throat. When I say constant, I mean everyday about 50% of the day. It doesn't bother my while I'm sleeping. Eating helps me feel somewhat better. This has been going on for about 8 months. I've tried 2x day 40mg Prilosec- did no good; Zantac- helps in the short term; apple cidar vinegar- kind of helped; and now I'm trying 60 mg of Dexilant once a day. My GI doctor indicated that the next step is a nissen fundoplication. He said b/c of my age and b/c the PPIs aren't working that surgery would be indicated. I'm praying the Dexilant works b/c I really, really don't want to have the surgery. The potential side effects seem worse than the heartburn (but I'm scared to death of the C word too, especially since I have 2 young children). I also don't want to be on a PPI for the next 50 years either!

I know what you mean about being bummed about it, I get feelings of depression sometimes b/c I feel like nothing is helping and I'm scared that b/c of my age that I have just that many more years for it to get worse. I'd love to get some more of your thoughts and maybe we can share "research" we've found. When do you go back to the doctor? I'm supposed to try the Dexilant for a month and then do the 24 hr pH monitoring test if it's not helping.

gerd_hater
Regular Member


Date Joined Oct 2012
Total Posts : 322
   Posted 2/16/2013 9:43 PM (GMT -6)   
A lot of you young people with Barrett's have better options these days than even 5 years ago.
Please read this and go through the links for more info:
www.healingwell.com/community/default.aspx?f=45&m=2622256&g=2645390#m2645390

Here is a video on the evolution of regenerative medicine, by Dr. Badylak.
www.youtube.com/watch?v=6hS_xqrzhIs

I personally haven't had experience with them and no desire to advertise them past sharing this information on what is actually out there. (Read: I've googled an insane amount and this is what I've come up with :) )

DOGGBONES
Veteran Member


Date Joined Apr 2012
Total Posts : 707
   Posted 2/18/2013 5:38 AM (GMT -6)   
dreaming gator,
 
This is from my old thread, hope it helps you.
 
 I have barretts, gerd, gastritis, hiatial hernia, IBS, and poor LES valve. All of which have gotten worst over the years ( about 16yrs ). In June (2011)I was told I had short segment barretts and my LES valve was wide open, now the barretts are gone and my LES valve is partially open. I do still struggle with reflux daily, some days more than others. However I wanted to share what I feel has helped me make progress. I agree you will not cure gerd if you can not heal your LES valve (some say this can not be done but I disagree). I have gone thru all the same test as all of you have. This is what I have done to try and heal the damage.

1.diet changes; all the normal.....eat 90% chicken and turkey for meat (fish if I could choke it down). Sweet potatoes, raw carrots, broccoli, spinach, blackberries, whole grains, . I stay away from soda, coffee, choc, chips, dairy, pizza, beer etc.
2. spirulina (loaded with chlorophyll)
3. sleep inclined on left side
4. manuka honey
5.aloe vera gel (lakewood brand has NO citric acid)
6. carafate (coats and protects from more damage)
7. Tums or gaviscon as needed
8.dexilant (ppi)
9. zantac in the evening (h2 blocker)
10. dgl (when i can't time the carafate)
 
I have made some progress and have cut way back on the carafate, zantac, aloe vera. That being said, I believe the manuka honey is what healed my barretts. I take a teaspoon of manuka honey (higher the active  +  the better) with a cup of hot water as a tea morning and night.
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