Hi all,
I know many of you here suffer with various swallowing problems so I thought these links might be helpful to some of you. I had never heard of an oesophageal web till my barium swallow showed it and apparently it is common in many connective tissue disorders. I'm just glad I have the proof to show the doctor that told me it was all anxiety.
This is well worth the read.
I've had problems with this off and on for a few years - had an endoscopy done and had inflammation going on. It's yet another of the many hidden and often disregarded symptoms of Sjogrens for me 
Thanks for the useful links!
well...that is another sad note.....ugh...all about trying to keep inflammation down, I guess.
Good luck everyone.
👍👍👍👍 that Oxford journal article is grrrreat: thanks so much GG! My collection of chronic upper GI conditions was finally fully investigated & diagnosed in 2003 during a nightmare flare...this was years before my version of early onset immune dysfunction & connective tissue disorder was recognised...now I'm being referred to gastroenterology for lower GI investigations: you bet I'm going to make sure the consultant looks at my GI from mouth to the "exit down under" reference my rheumatology & immunology diagnoses!. So this excellent article turning up now is v timely🤗
👏👏👏👏Am so glad these investigations are helping you & your medics to understand your upper GI issues (GRRR: wish they'd stop wheeling on this "anxiety" theory.... DUH: we all know anxiety affects us, but it's not THE underlying cause of our health probs)
What's your gastroenterology treatment plan?
Thanks again for posting
🍀🍀🍀🍀 coco
Thanks Coco and so glad it is of help to you. I'm told that it is very common with connective tissue disorders and often goes unrecognised just being put down to dryness. Have you not had a barium swallow? I have had endoscopies in the past that have never really shown much but then they don't always show the very upper oesophagus or in fact the muscle activity of the lower as we are not swallowing during the procedure. I didn't realise this until it was pointed out by my ENT doctor and it showed both my web and lower dismotility both of which were missed by endoscopy and colonoscopy. If you haven't had one I really think it might be a good idea to ask as it can't do any harm and might show something you can get relief from. Either way, do make sure your consultant hears everything you are going through.
My treatment plan with gastro isn't set in stone yet. I'm awaiting an MRI of E,N,T, and upper GI and a CT of lower, and also been put back on prednisolone by my rheumatologist so I think the plan is to see how the steroids work, what the scans show, if anything, and take it from there.
Fingers crossed we both get something sorted, after all, it's just anxiety isn't it 
X
Yes indeed: finger crossed! I think you're clearly well on the way to getting sorted 👌. Is the NHS doing all of this for you? Am v impressed! I think you're achieving great things. Am so glad!
in 2003 I saw a gastroenterologist from our local NHS hospital privately after NHS ENT at that hospital badly let me down (as is so typical with patients like us, my upper GI probs overlapped with my chronic ENT probs). I knew I needed endoscopy/gastroscopy and this is what was done. He found enough to make a diff (chronic oesophagitis + metaplasia of gastric type, with chronic gastritis & inflammation of the duodenum & gastroparesis. Of course neg biopsy for both heliobacter & celiac).
He sent me to our nearest university hospital for 24 hour pH & manometry oesophageal testing + motility testing which were relatively OK (by then my GORD was minimal cause had been conscientiously lifestyle managing it from early childhood). He thought no need for barium swallow, but I know you're right & I want barium of lower + upper GI (my early onset crohns husband is adamant I need this). He put me on daily esomeprazole 40mg + domperidone, which my GP had me continue 6 years. Meanwhile I began a strict antiinflammation diet. By the end of 6 years the diet was paying off & nhs dexas revealed my rate of loss of bone density was way too high, + I was fed up with the lower GI side effects of esomeprazole, so although my GP told me I'd be in these meds till death, I just stopped daily esomeprazole & domperidone....no prob. But of course I continue the diet & all the lifestyle management....and cope with flares as necessary (eg adjusting to new meds, like daily myco, stirs my upper GI stuff up)
For the past 13 months my lifelong lower GI issues have been investigated by the Pelvic Multidiscipline Team at my local hospital . Urology & gyn & Womens Health Services have helped me sort out their parts of me. gyn onc at my university hospital is working on their part of me....and now gastroenterology there gets to deal with their parts of me
I know my daily doses of pred & myco & amitrip are helping by somewhat damping down the degree of my upper & lower GI symptomatology. Am hoping this won't complicate these gastroenterology investigations
Anyway, you're encouraging me to be optimistic about this referral: THANKS
XOXO
Always try to stay optimistic Coco. I know it's hard at times and you want to curl up and wish it would all just go away but we have to stay strong. I have some terrible down days but a good cry and a talking to from the family usually gets me motivated again and determined not to let this "silly little autoimmune thingy" beat me no matter how brutal it tries to be.
I know what you mean about ENT and upper GI overlaps, and about being let down by ENT. I have seen 5 ENT specialists previously and apart from the one who found my Eustachian tube dysfunction but did nothing about it, none of them found anything wrong with me. It was only my persistent GP and Neurologist who wanted other opinions that finally got me here.
I'm with your hubby, I def think a barium swallow would be good for you. X
😊👍👍👍👍😘🍀
I have had to get my esophagus stretched from choking. And 2 years ago I had a Laperscopic Nissan surgery for acid reflux and sometimes I feel like food isn't going down and I have to throw up. I am wondering if it could be inflammation.....
Very possibly Dalollies or maybe a bit of dismotility. Probably worth mentioning to your doctor if you haven't already.
Just another thought for those with swallowing problems - it may be worth looking up a disease called eosinophilic oesophagitis. It's a rare and little-understood disease that causes loads of problems including with swallowing. I was diagnosed with that before UCTD and the doctors swear they're not linked, but the two appeared within 6 months of each other...
A question for those of you who work(ed)
Those with raynauds help
Have you heard of HealthTap?
I am curious, how many of you have a diagnosis of SLE but have never had organ involvement? And how many of you have been diagnosed with .. 
Skin problems with Sle? 
