Worried about my daughter who has stage 4 GERD

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My daughter is 33 and has severe GERD. I knew nothing about it but after spending a lot of time on the web I’m now extremely worried about her future. She has been taking a PPI with little or no improvement and after another examination has been told to take another course of 8 weeks. She’s scared of the risk of osteoporosis and Lupus with long term use of PPI’s and as she’s only 33 it does look like that’s her only option. I’m worrying myself sick about her developing Barrett’s and possibly cancer. Can anyone give me any advice please? Thank you. 

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7 Replies

  • Posted

    Tell her to make diet and lifestyle modifications. I think this is a key step in controling GERD symptoms.

    - Avoid trigger foods - anything that worsens her symptoms. For a lot of people it's foods like citrus fruits, coffee, tea, alcohol, sodas, carbonated drinks, tomatoes, anything with mint, fatty foods and fast food. But trigger foods are different for everyone so You should suggest her to keep a food diary where she will keep track of which food makes her symptoms become worse.

    - Some foods that are generally GERD-friendly are bananas, oatmeal, vegetables (except for onion, tomatoes), fruits (except for already mentioned citrus fruits), nuts (but don't eat too much of them either), white meat such as chicken and turkey... I've heard that adding ginger as a spice to your food is also good for GERD, my mom puts it when she cooks alongside turmeric powder which has great anti-inflammatory properties. Some people say that drinking aloe vera juice is really good! I personally only tried it once so i can't really speak on behalf of that, but i'm planning to incorporate it into my diet soon. Also, keep one very important thing on Your mind - trigger foods are different for everyone! It's important that she finds what's good for her and avoids what isn't.

    - Avoiding dairy would be wise for her to do. I usually only eat light yoghurt with 1.3% of fat and kefir. I've read that someone's symptoms improved after consuming homemade kefir, but again, it's not the same for everyone.

    - Other tips include stopping smoking (if she does), elevating the upper part of her body when she's sleeping. I usually sleep in a half sitting - half laying down position for the first few hours and then i lay down properly. It seems to help me, so she could try it herself and see if it works for her.

    - It's better not to eat at least 3-4 hours before laying down in bed at night. I usually don't eat after 7 pm.

    - Eating smaller, but more frequent portions of meals could help as eating large amounts of food at once could potentially trigger the symptoms. And also keeping her stomach full at almost all times is good because for some people, empty stomach could also trigger the symptoms.

    - If she's overweight, it'd be wise to lose some weight because increased pressure on her belly could cause acid to back up into the esophagus. Same goes for clothes that are too tight around her waist.

    - Reducing stress is something she should definitely do! It actually aggravates symptoms for the majority of people who suffer from GERD. She could try meditating, yoga or whatever helps her to reduce stress. If she has anxiety issues, she should get it under control. Though i've read somewhere that some anti-anxiety medications can trigger the symptoms of acid reflux so look out for that.

    - I've recently gotten an advice to try taking liquorice and it's worked. It can be taken as a supplement or as tea (decaf of course), but if she decides to give it a try, consult a doctor before hand. If she has a heart condition or blood pressure issues then she shouldn't take it as taking too much liquorice can create issues with those. Recommended daily intake is (for tea) 1 table spoon of liquorice, which is about 3 grams, mixed with hot water. It shouldn't be consumed for more than 2 weeks.

    That's basically all that comes to my mind when it comes to tips about GERD. I'm still learning and trying to find more tips and trying to understand my GERD a bit more and i think you should tell Your daughter to just observe her symptoms profoundly, and what triggers her symptoms so she can avoid it. I'm sorry if this is too long lol, I hope some of these advice will be helpful to Your daughter smile

    Also... i thought that doctors advise patients with serious cases of GERD to get surgery?

    Best wishes and fast recovery to Your daughter xx

  • Posted

    ive been on a ppi for 3 years. The only things which help apart from the ppi are elevating the head of my bed and not eating right before I sleep.  Did she have an endoscopy done?
  • Posted

    I would say get off of the PPI’s as soon as possible.

     It would be better to just stop eating completely for a few days.   The symptoms should stop. Then start to introduce food slowly  and learn what you can eat without reflux symptoms.    Stay on that only Until you’re sure  to have no symptoms then add another food.

     Continue that with no PPI’s.   Sleep sitting up in a reclining chair only eating light meals.

    Your on your way back to normal.  Anytime you get a little reflux and it’s caused by the food you ate last.

    Avoid that from now on.

     It’s a process But I think it will work to get off of the PPI’s.

  • Posted

    Hi Julia

    Has your daughter taken steps to change her diet/lifestyle? This can help enormously with this.

    Regards.

  • Posted

    I understand your concern for your daughter. I also had severe chronic gerd from about the same age as your her. 

    What some people on this forum don't seem to understand is that gerd is caused by a dysfunctional lower oesophageal sphincter (LES) and not by diet. Diet may effect symptoms and changes in diet may help reduce symptoms in some people especially those with intermittent acid reflux. However those with chronic gerd, which is a permanent disease that does not get better, will often not get much benefit from changes in diet hence the need for permanent PPI therapy. 

    PPIs were never meant to be prescribed long term but despite the risks you know about which are very low I should add, many choose this option as it is better than suffering with gerd. One thing to bear in mind with PPIs is they can induce a strong rebound reaction when you try to get off them, especially in younger people who still produce high levels of stomach acid. Rebound is after the PPIs have shut down the acid secreting pumps in the stomach and the therapy is stopped, they start working overtime making the stomach more acidic than before. As the patient has a dysfunctional LES and an inflamed esophagus this can cause even more severe symptoms that before the PPI therapy was started - hence people are sometimes never able to get off them. 

    My story is that after a couple of years on PPIs I chose to have surgery to rectify my LES. It was a complete success and now I am cured. Life with gerd and PPIs was horrible now it's normal again and great. 

    What I'd like to tell you is that I don't think a diagnosis of stage 4 gerd is all that bad, especially if she doesn't have any Barratt's - and even if she did have Barratt's the chances of it turning to cancer are not high especially if it is short segment. Furthermore Barratt's can be ablated (removed by minor surgery). 

    My advice from my experience would be to find a good gastroenterologist who would consider surgical options should it be necessary, and not one who likes to take the "wait and see" approach of just sticking to PPIs long term.

    Surgery isn't much fun but it's not major surgery and a couple of months after its done it'll likely be forgotten about. The LINX device is a good option and there's lots of support around for people considering it. There are some good groups on Facebook of people who've had it or are thinking to get it. 

    One other thing. I know the internet can be scary, especially with mentions of Barratt's, cancer and the fast rise in this disease in recent years. Please know that an awful lot of people these days have gerd, lots have Barratt's too. Also please know that Barratt's takes a long time to develop in people with gerd, I think 8 or 10 years? so your daughter likely doesn't have it and being aware of it now gives her plenty of time to deal with the gerd before it got to that stage. 

    My mother worried about me too but thats what mums do - worry! As long as she finds a good doctor and is proactive with it, I'm sure she'll be fine. 

     

    • Posted

      Hi, so great to hear your surgery cured your GERD.  What type of surgery did you have?
  • Posted

    I was diagnosed with GERD, Barretts, esophagitis,chronic gastritis. After 3 months on PPi  +  numerous other 'digestion' meds, the endoscopy showed minimal Barretts so I was taken of all the meds including PPI. 

    ?I continued with the recommended change of lifestyle ( wedge pillow, no food 3 or 4 hours before bedtime except half a cup of weak decaf tea and a couple of biscuits, no tight clothing/ belts on waist etc etc)

    ?My symptoms returned and the endoscopy showed No Barretts ,( however I still have GERD, esophagitis, etc plus bile reflux.) I haven't been prescribed any meds 

      So it is possible to reverse Barretts even if it is found. 

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