Advice from people with a similar exp... - Oesophageal Patie...

Oesophageal Patients Association

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Advice from people with a similar experiences of oesophageal problems

mjcartw profile image

Hello, this is my first post. I am a 68 year old physically fit male. I've had acid reflux for quite some time now (around 10 yeasr I guess) and had an endoscopy 2 years ago which revealed Barrett's and a hiatus hernia but no dyspasia. My GP put me on omeprazole 20mg morning and evening. That seemed to fix things. My digestive system seemed to go back to normal and I resumed normal life. However, a couple of weeks ago, maybe more, I started to experience some symptoms that alarmed me, for example, feeling of having permanent indigestion and pain/discomfort behind and below my breastbone especially after meals and aches and pains around my neck and shoulders. These have persisted to this day. I can swallow OK and so far no problems with food going down, I'm not losing weight. I tend to be a bit pesimistic about my health and have lept to an obvious conclusion. I have managed to get a telephone consultation with my GP who has promised to book me in for an endoscopy and has prescribed Gaviscon advanced. I have no idea when the endoscopy might take place in the current circumstances. So I am interested in the advice there might be out there and to hear from anyone with the same or similar experience and obviously I want to know whether I have cancer or not!

17 Replies

Hi there are you still taking Omeprazole? If not carry on with it. Have you got a gall bladder still. Pain can radiate up in shoulder from gallstones and noticeable when eating fatty food. Hopefully you will get endoscopy soon and answers. I would try not to worry it could be a number of things.

Best wishes

Debbie

mjcartw profile image
mjcartw in reply to kiddy

Many thanks for your reply. I will stay with the Omeprazole until advised otherwise. Yes I still have a gall bladder. I will explore the possibility that this could be my problem with my GP. Thanks again for your reply.

Hi there. All I can say is try not to get too worried until you’ve had your endoscopy when you’ll know more. If you haven’t heard about an appointment within a couple of weeks then chase it up in case your doctor has forgotten or you’ve got lost in the ‘system’. In the meantime try to avoid eating anything in the two hours before going to bed and you could try raising the head of the bed or creating a wedge of pillows so you’re raised up when sleeping. Best wishes.

Welcome

Long term use of ppi is not conducive to your digestive system for obvious reasons.

Have a look into OPA's website on reflux awareness and tonloads of useful information below website.

opa.org.uk/awareness.html

Statistically, barrett's doesnt convert into adenocarcinoma as high as non barrett's cases, believe less than a percent but I cant recall the paper in which it was documented. Take with pinch of salt.

Anxiety can worsen your indigestion and reflux symptoms, so suggest work on relaxing yourself.

Your obvious quest for finding if you got cancer or not is definitely not going to be fulfilled here or anywhere else until physical examinations are conducted with biopsies (if taken) are returned. These takes routinely longer times.

Bluntly speaking, indigestion and reflux on it's own might not be a cancer diagnosis in my non medical views.

So persist with the referral and appointment upkeeping, with relaxing yourself being the immediate focus. Good luck.

mjcartw profile image
mjcartw in reply to Mauser1905

Thanks very much for your helpful comments. I have had a conversation with one of OPA's advisors and he concurred with your view that long-term use if Omeprazole could be contributing to my symptoms because of the reduction of gastric acid caused by the drug. This is something I shall pursue. I will report back on what I discover.

Hi Mauser, my husband’s OC derived from a adenocarcinoma in Barrett’s Oesophagus. My husband wasn’t aware that he has BO until the barium swallow test followed by gastroscopy.

He has on going reflux for many years and assumed it was due to indigestion or from eating bread and pastry!

His sister was diagnosed with BO and I’m wondering it it is genetic. She has checks to monitor the BO.

BO is not understood to be genetic or hereditary in current medical science. Dont think its confirmed to be the case as such.

Having said that the diet, lifestyle have changed significantly over this century.

In my limited understanding once BO is diagnosed in early stage and been treated for the root cause of the GERD and specific measures acted upon the advance from BO to adenocarcinoma is reduced significantly. Whereas people who don't have BO and the GERD goes on damaging continually the advance of high grade dysplasia to adenocarcinoma is aggressive and goes undetected, unfortunately to the non curative stages. But guessing the BO is duly diagnosed for many of the patients. Again I may be completely wrong.

Whether BO or non BO cases the physiological root cause is related to lax sphincter and/or hernia, GERD. Lifestyle aggravates the symptoms and not other way round. Thats a whole big topic to go about.

There seems to be less uptake to work on root cause fixing rather than just trying to manage the symptoms of daily basis, which eventually puts a lot of patients in the unfortunate situations.

Thanks for your comments Mauser.

Yes, hope my SIL’s BO will be well managed with change in lifestyle too so she will not have to experience this horrid OC.

2 yrs ago you were told you had barretts and the dr told you to follow up and you didn't? I assume? Went through this 9 weeks ago. You have to go asap for an endoscopy. Takes 6 minutes. May have you take 1 more test than pre admission tests, if you can during the pandemic. They'll lift your stomach (hiatel hernia) no problems there. Don't know how far your barretts got as you were supposed to follow up and 2 yrs you probably ate Italian food and carbonation and 6 pages of things your NOT ALLOWED. English your life stinks now. I don't know how bad your acid reflux is. Can you lay flat? Do you feel like your having a heart attack from acid? If not your doing good. If so you probably need esophageal sphincter where they wrap I call it the flap between the esophagus and stomach so acid and gall bladder bile don't keep coming up causing bile reflux as well as acid reflux. Take 1 step at a time and get your butt in for an endoscopy. It doesn't hurt, your asleep. Didn't you get a diet when he told you had Barretts? Had to go back in 6 months follow up? Did you ask questions? I'd get another dr and this time ask questions its your 1 life. I had the surgery if thats the surgery. Hiatel hernia is no biggie, but if you have the other one you need patience and you'll be fine. I'm praying for you

Hi I was a healthy 56 year old male in March of 2018.I carried mail for 35 years and was very active.i retired ,got a part time job and life was great until one day I would swallow food and right before it hit my stomach it felt like razor blades going down.i went to doctor ,got endo and found out I had stage 3 esophageal cancer.Had no other symthoms.Had chemo , radiation and 13 hours of ivor Lewis surgery.All was fine till November of 2019 when I started getting bad gassyro pain. Went to hospital and had tests n found outcsncer metastasized to my stomach. Been on chemo regiment since December and feel alotbetter. Moral of story is”u never know” and also u”know ur body” If something does not feel right get it checked , early intervention and a good attitude I’d the key, plus I ho to Sloan Kettering in New York which has a fantastic plan for cancer.Good luck n let me know how u feel

This should be taken very seriously! I had problems swallowing and thought I had a chicken bone stuck and put up with it for a few weeks! (Dumb on my behalf) It turned out to be Cancer at the junction of my stomach and esophagus. Stage 3. Get that endoscope as quickly as possible. If you aren’t already, try and sleep at a 30deg angle. This will help immensely with keeping acid at bay and assist I’m further damaging your esophagus.

It was never confirmed but I truely believe that may cancer started as a hernia Or ulcer inside my stomach and grew upwards into my esophagus. Unfortunately for me I didn’t feel the reflux which meant it went unnoticed. It was a blessing in disguise but the only way I was able to know i had cancer was the fact that food started to get stuck in my esphagus which in turn made me visit my GP. If I had noticeable reflux I may have caught it earlier.

Hi AussieCuz, your situation is similar with how my husband’s OC was found out. However, he also found out that the tumour was in the Barrett’t Oesophagus and adenocarcinoma.

He had oesophagectomy (Ivor Lewis operation on 2/7. He was very blessed with no major incidences and recovering well at home. He has no appetite and doesn’t take much to feel full. Needs to drink 2 x Fortisip (a high energy and protein drink) otherwise he would not be able to consume 1800 calories per day. Still on ‘mince and mash diet’ for another week before he can progress to soft food.

Feels pain from the chest wound and weaning from strong pain killers. Taking 2 Panadol 4 hourly and 1 Targin daily. Trying to drop Targin by next week and only have Panadol.

Without the Fortisip drinks I’m not sure how my husband can eat enough orally so he won’t lose weight. I wonder if he can have the 2x daily of Fortisip ongoing without stopping?

In these difficult times getting an endoscope test may be dependant upon the hospital.

In March I was referred to the hospital for a colonoscopy, they had stopped doing them so sent out a `stool` test kit`. This results showed slight traces of blood, when the hospital phoned to say they are not doing endoscopes but are waiting to get the authority to send patients to private hospitals. Come a week ago I got an appointment in a private hospital after the exam the doctor said he had removed 2 polyps and stems and said glad you came and recommended a further check in 3 months.

Keep in touch with your doctor about an endoscope, it may take time.

Incidently, due to social distancing and isolation they had stopped sedation as people were having difficulty getting to appointment.

Take care and look after yourself.

Mauser1905 profile image
Mauser1905 in reply to Mick

Hello Mick, Was there any advise as to the biopsy being taken for the polyps removed and lab results awaited?

Mick profile image
Mick in reply to Mauser1905

Yes they did say they would be sent for tests and the result of my colonoscopy would be sent to my doctor within 24-48 hrs. Now waiting for doctors to contact me, but the surgery is closed as they are working from another larger surgery. We are living in trying times at the moment. What with no face to face only telephone consultations.

Incidently after the exam (without sedation) I was feeling fine to drive home and had a `proper` meal that even, haven`t had any problems or discomfort. Just need to find out why I keep getting a cough and wheezing.

Mauser1905 profile image
Mauser1905 in reply to Mick

Good stuff, things happening and moving in the background. I wouldn't be overly worried telephone consultation for the time being, something is better than nothing at all. And in some sense if only follow up and jo physical check ups then I prefer video consultation for convenience.

Good luck with your test results.

I have oesophagitis and gastiris and hiatus hernia. Now I have awful discomfort tightness around my middle after eating and right shoulder pain. I spoke to a GP today and I knew what hed say... right shoulder pain probably arthritis and given me some gel. But I know it's not!! My neck can hurt too. I was interested in what you said about your neck shoulder pain.

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