Barretts anyone?

[nancarolyn]

Trying to figure out what to do. Have been putting it off.

[Barnclown]

Yes, fortunately reasonably well damped down over past 10 years....what about you, nanno?

😘🍀😘🍀 coco

[nancarolyn in reply to Barnclown]

I do not know what you mean.

[Barnclown in reply to nancarolyn]

I mean barretts oesophagus (this is how we spell it in the UK)... apparently I’d probably had barretts for many years, while suffering also from childhood onset oral inflammation + erosive ulcers, hoarse voice, loss of appetite, trouble swallowing, nausea, feeling if globe in my throat etc etc ....

My NHS GPs were unaware of my infant onset lupus diagnosis, and simply assumed my persistent upper GI issues were commonplace. They diagnosed me clinically with relux + hiatus hernua and treated me accordingly, which didn’t help much.

Things of course persisted and gradually eorsened. My upper GI was finally throughly investigated and barretts diagnosed when i was 50. At the same time, i was also diagnosed with chronic oesophagitis + gastritis + gastroparesis. The gastroenterologist put me on daily domperidone + high dose PPI for 6 years. Meanwhile i went on an even strict antiinflammation diet (based on the Low FODMAP diet i’d been practicing for many years). Eventually the diet + all the self help lifestyle management guidances stabilised my diagnosed upper GI conditions enough so i simply gave up the daily domperidone + PPI. But as i have all my life, i still have signs, symptoms, manifestations 24/7 and definitely have to be very strict about diet, lfestyle management etc.

Over the years, i have had repeat endoscopies, but now the NHS thinks i’m managing it so well that no more endoscopies unless symptoms flare. At 64 I feel very lucky, but i can’t help suspecting the real reason is that the NHS is saving money by not monitoring me closely because my upper GI conditions are cooperating with management and i’m over 60...

Now my lifelong childhood onset lower GI stuff is finally being thoroughly investigated & diagnosed, i realise my lifelong GI issues have always manifested mouth to a**s...and reflect my infant onset lupus, hypermobile ehlers danlos syndrome and early onset secondaries (Sjogrens, small vessel vasculitis, systemic sclerosis (this is finally being diagnosed) etc etc). Basically, i feel as if my whole life has been about coaxing food in, along & out again! Whoever designed & installed my plumbing did a bad job 😏😆

A few years ago, rheumatology bone profile blood tests prior to osetroporosis IV zoledronate treatment revealed below range immunoglobulins G,A,M (a type of bone marrow dysfunction called hypogammaglobulinaemia...whicc is a type of Primary Immunodeficiency called Commin Variable Immunodeficiency (CVID) , not caused in my case by immunosuppression meds). Looking back at prior blood tests, we discovered this too was so early onset that it could well be underlying/causing my AIDs. This is also involved in causing my lifetime out GI tract issues

I think you live in the USA. I think katidid does too and has given you great advice! Am wishing you every best wish nanno

Aplogies for the lonnnnng reply, but this subject is close to my ❤️

😘🍀😘🍀 coco

[katidid]

As in Barrett’s Esophagus? If so, I have it and a pretty clear set of management and recheck instructions if you need support or info.

[nancarolyn in reply to katidid]

Yes. I would love to know what you are doing about it?

[katidid in reply to nancarolyn]

Routine:

Daily antacid, once in AM and once in PM. I like Zantac extra strength. I avoid foods that give me, personally, heart burn. Despite what they say, everyone is different, so you have to avoid the foods that give you acid reflux or indigestion. Almost no alcohol. Very special occasions only. Eat slightly smaller portions or just don’t try and eat a whole bunch at once.

Clinical Follow Up:

Exam (endoscopy) every 2 years

Cell Scrape every 3 years

They did say as the years go on, that the scrape may need to be more frequent and more cells taken off each time.

Regular endoscopy is key. That will (hopefully) stay ahead of the EC possibility.

Hope this helps!

[nancarolyn in reply to katidid]

It really helps. Thank you. I have not been keeping up with it. Recently read article about doctor from Hopkins doing procedure that completely got rid of it, so no threat of cancer. Got my attention and you did too. God bless you for that.

[katidid in reply to nancarolyn]

Def get your endoscopy done soon! And, my gastro said the same thing. New techniques in scraping and prevention (cell analysis) are reducing the rates of esophageal cancer from Barrett’s. I remember being really scared when I found out I had it, but seems like with upkeep and advancements most of us will be ok

[Barnclown in reply to katidid]

Great advice! I think you live in the USA katidid? I hope you don’t mind me asking: how satisfied are you with the way your medical insurance covers all your multisystem healthcare, inc monitoring & meds etc? 😘🍀

[katidid in reply to Barnclown]

Oh my, I could write a dissertation on this! As I’m sure you know there are many insurance companies with hundreds (maybe thousands?) of “products”. A product is what people refer to as insurance and it comes in so many types with so many different provisions & restrictions that’s its hard for me to tell you.

I can tell you that even with insurance, in the last two years I spent about $55,000 USD out of pocket.

US insurance companies are not fans of autoimmune patients, of any kind. In fact, they don’t like anything chronic. They use a lot of fine print abc trickery to pay nothing or as little as possible.

Half of my doctors don’t even take any insurance any more. They mess with doctors as much as patients, especially the private practice ones. Problem is, those are the ones that usually help the most!

So, to answer your question, I’m happy I’m insured, but the Lupus and PsA make it really difficult to navigate the system and get approval for services and coverage. However, if I get hit by a bus, I’ll be ecstatic about my coverage! LOL ... the irony.

I was thinking about writing about my experience with this system. The leading cause of bankruptcy in the US is medical bills (not credit cards!!). So, more people need to help others navigate the system.

[Barnclown in reply to katidid]

GRRRREAT REPLY, THANKS 👍

None of my USA family have immune dysfunction or connective tissue disorder illness...and they find the medical health insurance thing hard enough

I think you are amazing...am so glad you’re here: the trend towards private medicine in the UK is sobering...your feedback helps our awareness hugely!

[kyliesinead]

I was diagnosed with barretts very recently and go for my first follow up next month. I asked the gastro consultant if it was connected to my UCTD and he said no, it was another matter altogether. This surprised me . I was hoping it would be another clue towards getting a definitive diagnosis. I have altered my diet, going vegan recently for this and other reasons and I'm working on alcohol reduction.

[Barnclown in reply to kyliesinead]

In my experience, most gastroenterologists underestimate the extent to which AIDs can & do contribute to our GI tract manifestations...whereas gastroenterologists with special experience of AID patients readily acknowledge that our underlying GI signs & symptoms can be characterised by a significant degree of immune dysfunction + connective tissue disorder involvement, often including inflammatory process 😘🍀 coco

[katidid in reply to kyliesinead]

He she is right. It may or may not be. It’s not 100% correlated but should be taken into consideration given context. Mine was because my immune system went after my small intestine and pancreas as well.

[Barnclown in reply to katidid]

Thanks! My GI tract has always been & still is similarly affected by my many overlapping AIDs + my PID. you’re right: we can’t generalise...but we can make sure our forum knows what’s been observed in our cases and how diagnosis and treatment have contributed to proving that AID is significantly involved

[katidid in reply to Barnclown]

Definitely. Especially in the case of Barrett’s. Untreated it leads to a horrible form of cancer, so no matter what anyone on here should be under the active supervision of a gastro and on the proper schedule of tests and treatment.

I would also say, since GERD and acid problems are so common in our population, that anyone experiencing symptoms should relay that to their doctor to watch for progression.

[Barnclown in reply to katidid]

Your words hit home: i’m actively nhs monitored due to high cancer risk in several body systems: bones due to my early onset PID etc, rare gyn cancer due to my 5 months of daily inutero exposure to the notorious artificial oestrogen endocrin disruptor diethylstilboesterol (DES...which my medics think tipped my genetic predisposition over into the infant onset lupus), + connective tissue cancer (chondrosarcoma (which was clinically misdiagnosed as RA for 14 years)), now, apparently, the eye cancer due to vital long term daily cyclosporin treatment....then there is immediate family history of malignant skin cancer & colon malignancy. Add to this 7 years ongoing on daily immunosuppression meds after early onset AID going with only emergency immunosuppression for 50+ years....Rheumatology researchers tell me the simple experience of long term malignancy alone makes me extra at risk. So the nhs attitude to less monitoring re my barretts cause it’s been cooperating with treatment & looking good at gastroscopy for years seems a bit iffy...but i have witnessed cancer due to barretts and know exactly when to insist on gastroscopy with biopsy even if i have to raid my piggybank to get these! Oddly enough...i’m not frightened by all this cancer risk...go figure...

[kyliesinead]

Yes, even as a lay person I had read about that so you would think that the medical profession would have made the connection.

[kyliesinead]

Yes, of course. I'm not a medic basher, I appreciate all the good work that happens in our stretched system.

[Barnclown in reply to kyliesinead]

Of course 👍...There are positives & negatives about everything in life ...nothing is 100% perfect. A bit of debate & well intended constructive criticism is good 😉🤗

[maggielee in reply to Barnclown]

Interesting discussion, my mother had Barrett's & it was the London Lupus specialist who asked for me to be tested for it do to my years of reflux, etc. I was pleased my GP referred me & i was diagnosed with a hiatus hernia and he insisted I switch to Ranitidine.

I certainly better understand now, what my mom was going through in regards to watching what you eat & how you sleep at night to avoid reflux.... I finding now with this & sjogren eating is becoming even more challenging of late (dry throat & difficulty swallowing). So cutting more foods out of my diet, definitely no alcohol, just not worth it. 😵... At least I don't have the Barrett so far so good....ml

[_Lori-el]

I've had Baretts Oesophagitis for over 20yrs. Took awhile to find the right meds for me as it was severe. I would wake in the middle of the night gasping for air cause I had aspirated vomit while sleeping. It would be in my mouth, sinuses and in my lungues.

Went to my GP and he put me on Pariet, which turned out wasn't enough on its own. He then added Zoton (Lansoprazole Enteric 30mg Capsules), which worked really well with pariet.

I take 1 Capsule of Zoton morning and evening and 1 Pariet tablet near bedtime.

I was also sent to a Gastroenterologist because with Barretts you can get cell changes in the oesophagus which can be cancerous. Having and Endoscopy once a year can catch anything really early.

I've had cell changes since the beginning and I've had an endoscopy just recently and have been given the all clear. So although the cell changes are there they don't act on it because cancer may never happen, but if it does happen they will get it early.

I'm not saying this to panic you but at the same time it is information you need to have.

I hope I've helped but also not scared you. Knowledge is powerful remember that.

[nancarolyn in reply to _Lori-el]

Thank you for the information. I was told I had Barretts 5 years ago and take omneprazole, but have not been back to doctor. Did not like him and have a habit of postponing appointments. You gave me motivation to make the appt. I did make it. I have had endoscopy many times before and know I will need it again. Thank you for caring. God Bless you.

[123mahlet in reply to nancarolyn]

Yes me too,I have to make the appointment AsAp 2yrs past due for endoscopy.