Just wondering, those of you with reflux... how often have you had an endoscopy to check for Barrett's etc?
I last had an endoscopy a little over five years ago and didn't have Barrett's then, but was wondering if I need to have one again at some point, as my reflux is much worse now.
I used to try and manage mostly without PPIs but I've had to go back on them a lot more frequently recently as my flare-ups are getting more and more regular.
I've been reading about an amazing new surveillance tool called the Cytosponge, whereby you swallow a pill with an expanding sponge inside, on a thread, which is pulled back out along with a sample of cells which can diagnose Barrett's. Takes ten minutes. So much easier than an endoscopy. It's already being used widely in the NHS in Scotland. And England are doing a mass trial of it. I'd love to be part of it, but as I live in Wales, I'm not eligible. Maybe some of you might be interested. Details below.
Anyway, it would be great to hear if any of you have had it yet, or if you have regular endoscopies.
My rheumatologist has just offered me a Barium Swallow, but as I've had a lot of X-rays and CTs in the last few years, I'm worried about radiation doses. Probably silly, I know. But we have so much to think about with our condition. And a barium doesn't show Barrett's, so I'm not keen.
I totally relate to this question. I’m in Scotland but no one has suggested a better way than gastroscopy. The waiting lists here for scopes are horrendous eg I’m down for a flexible sigmoidoscopy but the average wait for urgent colonoscopy is at least 46 weeks and this is for rectal bleeds! I asked my gastro for another gastroscope last year - last one 3 years ago showed polyps and a hiatus hernia which weren’t there on the previous one. My reflux is worse too but apparently this doesn’t often correlate with progressive disease so I heard on a Royal Free gastro on an SRUK YouTube video presentation. My gastro refused and I feel I’ve hit a brick wall with her now. I had a Rheumy phone review this morning and my consultant has agreed to refer me to Royal Free gastro because she is concerned too by lack of advice or guidance from local GI team. Typical that my hospital doesn’t seem to use this Cytosponge you mention but I’ll look it up now you’ve mentioned it. In the US Scleroderma groups they usually get annual monitoring much like we should for heart & lungs apparently
That's all very interesting Old Ted. Thanks for replying. Perhaps you'll be able to ask for a referral to another region in Scotland that does offer the Cytosponge. It seems like such a no brainer to introduce this technology across the NHS, because it's so easy to administer, and cheap compared to an endoscopy. It's reassuring to hear that an upsurge in symptoms doesn't necessarily mean disease in the oesophagus is progressing. I have contacted a few places that are running the cytosponge trials in England, in the hope I can wangle being part of it, somehow, but there are apparently age restrictions for women to be involved. Generally for men, you need to be over 55, for women it is over 65, because they say men are more likely to get Barrett's, but that doesn't take into account folks like us that have an illness that causes reflux. Not to worry. I'll keep pursing. And I hope you can get access to the cytosponge tool. It sounds so innovative! And best of luck with the Royal Free gastro.
Thanks. On further reading they do seem to do then here in my university teaching hospital but only as part of the cancer screening pathway - which as you know yourself - doesn’t include scleroderma although of course it should 😒🙄x
Urgh!! So annoying. You never know, you might be able to elbow your way on, somehow. Not that you should have to do any elbowing. Why is everything so hard!!! Best of luck with it. x
Thanks. I think what depresses me about my hospital’s gastro department is that they have no interest in helping those of us with SSc and no curiosity about the unique gut manifestations of this disease. The fact that it’s a university teaching hospital makes this worse. My antibody means that I’m at extra risk of severe GI involvement typically affecting the lower GI - which I already have. So if even one of the lead consultants can’t take an interest and endeavour to learn more than how on earth will students ever learn about scleroderma?
I am seeing my neurologist tomorrow for review of migraines. She tries hard to help testing my micronutrients for eg. She and my rheumatologist actually organised a trial of IV immunoglobulins for me specifically approved by the pharmacy label for autoimmune GI dysmotility. Sadly I had a very severe necrotic skin reaction after the second round so the trial wasn’t of much use to furthering the knowledge of this disease but anyway gastroenterology were completely disinterested 🤷🏼♀️🙄
Oh, that’s all so frustrating. I agree on the lack of gastro interest. It’s the same here in Wales. Not interested at all. Which is weird because GI problems are the headline for a lot of us. You’d think we’d be of interest to medics because it’s such a rare condition. 🤨 Oh well, onwards! Best of luck with your neurology review tomorrow. Sounds like a lovely consultant, as does your rheumatologist. Mine is lovely, too, which is at least something positive. All the best. X
Hi Duck, where are you in Wales? My local hospital is Bridgend. I see consultants in several areas, including gastroenterology, and all have been really helpful, with lots of collaborative working. Hope things get better for you soon.
Hi there IlovePorridge, (love your user name, by the way. I love porridge too!! 🙂) Thanks for replying. I'm in south east Wales. I have a very caring rheumatologist and very good annual heart and lung checks, just a long waiting list for gastro. I've heard good things about the set up in Bridgend. Hopefully that collaborative model will spread to other regions. So glad they're looking after you. Thanks again for getting in touch.
The gastroenterologists I've seen are also at a university teaching hospital 🤨 I don't know about you, but makes me lose hope that newer generations of doctors might more open minded to new research and technologies. Both of the gastro consultants I've seen just won't accept that anything I experience could be related to connective tissue disease. They might be able to discharge me at some point, if they just listened to me, but they seem determined to drag the whole thing out.
Mind you, the previous rheumatologist that insisted I had Fibromyalgia and based her assessment of EDS on comparing my joints to hers (AFTER saying she's "a bit hyper mobile" too) is also a lecturer. I've worked with plenty of people who can't do their jobs, but it shouldn't be too much to ask when lives are at stake.
Hi FredaN, yeah, I agree. I think gastroenterologists just don’t get the exposure or training on conditions such as ours, and because most of what they see are the more common diseases, they’re just not interested, or don’t feel able to think beyond the every day. I think also, the NHS, brilliant as it is in many ways, is so bound up in routines and history, that getting it to move swiftly, make changes, adopt new technologies or even review the way they treat different conditions feels impossible. It feels to me that they do things the way they’ve always done them, and they’re reluctant to steer a new path. Disappointing and frustrating. And I know many clinicians would like to see new ways of doing things being introduced. Not sure how we change it, other than nagging and being squeaky hinges, but that’s exhausting. Wish we had more power. I do wonder if the SRUK could take educating gastroenterologists as one of its missions going forward.
I was sad that the new BSR guidelines for Systemic Sclerosis didn’t add regular GI monitoring, including gastroscopes or equivalent, to the list alongside existing heart and lung monitoring. I think the lead drs for SSc in UK need to focus a bit more on educating GI drs on the GI complications of SSc. I noticed that my own and one other antibody was singled out in the latest SRUK magazine in an article about Fibrosis so I told my rheumatologist on phone and showed my neurologist yesterday too. They work together a lot because of neuro manifestations of Sjogren’s and Lupus (and APS and Vasculitis). Both a great consultants but neither know that much about SSc so I do my best to share what I’ve learned with them. They seem very up for learning more and try to compensate for my late diagnosis so it’s a real shame that gastro are so indifferent. They both show me how well a genuinely MDT approach can work and could save so much time and money for the NHS too.
Colour photo of a page from the Spring SRUK magazine about Fibrosis
Ah, yes, I read, that, too Old Ted. It definitely stresses the need for Gastro to be part of the discussion. Really glad your rheumatologist and neurologist co-operate. I do wonder if that type of MDT approach needs to go back to the medical school stage, whereby trainee doctors are given more information about how autoimmune diseases always cross disciplines. And as you say, it would save money for the NHS in the long run.
Yes I agree although I suspect that each healthcare trust or healthboard has its own management overseeing everything in a manner that often gets in the way of willing doctors too - as have just posted about in an update here. I think it takes a less jaded younger dr to point out new approaches such as your Cytosponge. Older managers and consultants can get very set in their ways and the medical hierarchy is a huge issue as well where it comes to innovation. I’m supposed to have a virtual session with 3 1st year medical students from Leeds soon as their appointed long term condition patient for a very positive sounding project. The patient in me is delighted to be able to help but the mother in me is cautioning that a lot of this might cause disillusion as it did with my youngest when he worked with breast cancer patients at uni and young Lupus patients - then encountering the hand 🖐️ where potential implementation of improvements to the NHS service deliveries were concerned. So I’ll try to focus on the best practice I’ve encountered rather than the worst!
Love the sound of the project, Old Ted. Best of luck with it. All change has to start somewhere, and the more knowledge we can give the next generation of medics the better. Hopefully with new technologies and fresh thinking the treatment of our conditions will change. I remain positive.
Ooh hopefully it will be available on catch up via SRUK soon. I did see an item had been shared the other day on Good Morning Live raising awareness of Raynaud’s for February but more importantly 3 interviews with two severely affected patients with SSc and a good rheumatologist from Bristol explaining secondary Raynaud’s. It seems SRUK have been v busy! xx
I have had reflux for nearly 40 years and was initially told after my first endoscopy in the 1990's that there was a tiny patch of Barretts, 4 endoscopies later and it has never been mentioned since, although they have found lots of other things (not cancer). I asked my gastro consultant whether I should receive further screening for it and he said as it had probably resolved itself then no, but if there was anything that gave rise to concern then they would use a cytosponge. This was a conversation a couple of years ago and I am only in my 50's.
Incidentally my reflux control improved rapidly when I changed from lansoprazole to esomeprazole and also when I was diagnosed and treated for SIBO. I had attributed the bouts of nausea, burping and really bad reflux to the general acid issues but it was the SIBO. Obviously if reflux is controlled then it reduces the change of cell changes in the oesophagus.
Many of us will have had a barium swallow, it's only a quick x ray (some people mistakenly think that the barium itself is radioactive, it's not, it just shows up on an x ray). The barium swallow is particularly useful in helping to identify reasons for swallowing difficulties that many of us have, although as you say, it won't detect Barretts.
Thanks so much for your reply, Cowhide. Very interesting to hear your experiences. Especially the differences you’ve noticed since switching to esomeprazole. I’m on omeprazole. I hadn’t considered trying another one. I’ll check that out. And yeah, I think I may have had (or have) Sibo, too. I was diagnosed with Hpylori in the autumn, and the mega antibiotics and large dose of PPIs for that have got rid of some gastro and Ibs type symptoms, but the reflux is back again now.
Thanks for the advice on the barium. I think my worry is more the cumulative radiation of all the scans I’ve had before. But yeah, I should probably have it soon.
Interesting to hear about your endoscopies, too. So glad the Barrett’s resolved. And that they’ll use the cytosponge if you need further investigation. I think that test will become a game changer.
Thanks for your post this is a very interesting development as a diagnostic tool and I would gladly take part, my symptoms arent completely under control and I do worry about Barratts oesophageal in the future .
I have been signed off from the Gastroenterologist and I am still under ENT but no one as mentioned regular check ups . My Rheumatologist dosnt correspond with any other department I am under , no multi disciplinary approach for me.
I am sure some regular monitoring should be happening and would be helpful.
I agree. Multi disciplinary approaches don’t seem to happen for us, which is weird because that method has been so successful in treating other conditions. My rheumatologist has referred me to gastro, with a potential four year wait for anything other than scans. To actually see someone, goodness knows what you need to do. Dispiriting. Thank goodness for the pioneering work of the likes of the scientists developing the cytosponge. Just need to get the NHS to roll it out to everyone across the whole UK without putting gatekeepers on it to restrict access. Hope you can get access to it. All the best.
they apologised and said I didn’t fit the criteria, to young at 57 next and female, they just advised go back to GP or ENT If my symptoms continue.
I did have a telephone follow up consultation with ENT yesterday funnily enough and that’s why your post caught my eye in particular ,during my conversation I explained my concerns about on going symptoms and Barrett’s oesophagus, he said he would request a F2 F appointment in 4-6 , I thanked him and didn’t expect to hear anything for a while , anyway this morning I got a digital letter through for an appointment end of March. I have been under them for a while and on review.
I explained I had also been experiencing some Sjögren’s syndrome symptoms and I am seeing the Rheumatologist next week and the Rheumatologist has said he will access this , I have already seen the GP. Who advised speaking to rheumatologist nurses ,which I did.
So on mentioning that to the ENT Dr he said the rheumatologist my request they do a lip biopsy to see if it is Sjogrens, so that is why he said 4-6 for appointment to see if Rheumatologist request this in the meantime,but problem is they are at dlfferent hospital trust so I will have to give the details to the Rheumatologist for the ENT and see if that is what he will request and maybe they could do it at the one appointment. My Rheumatology dosnt even seem to get my records up from my local hospital because they are part of a different trust. This definitely dosnt help with patient care and facilitation of a multi disciplinary approach.
The ENT Dr did say if I have Sjogrens that could make managing symptoms harder too.
So we will see if any correspondence between the 2 departments happen over this issue.
Oh Buttsy, that's all so frustrating!! I really hope the two trusts communicate better going forward. It's mad, when they're all one NHS. I share this frustration with living in Wales. It's not easy to be referred to specialist centres in England and they just don't really have the specialists here.
So glad you've got an ENT appointment, though. Perhaps ENT are more interested in us than Gastro, especially as a lot of our reflux symptoms can be felt in the throat, with mucus and post nasal drip and sore throat, cough etc.
Really frustrating that you don't qualify for the cytosponge. I hit the same brick wall. Basically it's because they've assigned two age brackets to the trial... men can join the trials in their fifties, but women aren't allowed until over 65, I think. Apparently this is because more men test positive for Barrett's than woman, and at younger ages, but that doesn't take into account folks like us who live with reflux from whatever age it starts. My only hope is that the test is rolled out quickly to include everyone who suffers from reflux. There's a great charity called Heartburn Cancer UK, and it is working hard to have this test as a standard tool within GP practises. Really hope this happens. The website is heartburncanceruk.org
Very best of luck with it all. And if I hear any more about the sponge becoming more widely available, I'll post again. X
Good luck with the Gastroenterologist appointment, I hope you don’t have to wait that long, all you can do is chase it up if you don’t hear anything and hope someone listens .
Thank you for this. I’ve had GERD for over 11yrs now, am in need of another endoscopy and would much rather have this than the standard scope.
I take part in scleroderma research. At my consultation today I was told they’re launching some new research into specifically the gut problems associated with scleroderma . My major university hospital is undertaking this across disciplines. Someone is pushing ahead at last x
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