Bronchiestasis and acid reflux

[Shonamackay]

Hi recently been diagnosed with Bronchiestasis probably caused by acid reflux also got hiatus hernia. Had ciprofloxacin recently and now am suffering from severe anxiety and weight loss, any advice or comments welcome feel so low at the moment am female and 54 x

[GeorginaS]

Hello. It's useless saying try not to be anxious, I know as I too get very anxious.

I believe they've given you an antibiotic and I hope they've given you something for acid reflux too. If not, I think they should under the circumstances you describe.

I don't know the stage of your bronchiectasis. Do you? I went to respiratory physio session on bronchiectasis and it was 'very' useful. Everyone there had it and with medication and breathing techniques they were doing fine.

Hiatus hernias are very painful but the problem does go away, eventually.

I hope you feel a little reassured. I find I suffer from 'analysis paralysis' as my thought patterns are worse than my diagnosis!

Big hug from one anxious person to another xx

[Shonamackay in reply to GeorginaS]

Thank you so much for your reply I have been on lansoprazole 15mg a day for years but not sure think it may need increased. I am hoping that I will see a chest consultant after the CT scan had two abnormal chest xrays recently after complaining about persistent cough to my GP for years, weight loss is really worrying me too never smoked but keep thinking something much worse is lurking xx

[GeorginaS in reply to Shonamackay]

Glad you're on lanoprazole. I take that in the morning and ranitidine at night. I didn't at first but it really helped. Ask your GP what s/he thinks? Belt and braces but who cares. It helped my cough! I've coughed for two years! Totally knackering!!!

I'm great at thinking the worst but I reassure myself with the fact that if anything really exciting was going on I wouldn't have to wait as long as I've waited!

Codeine linctus (prescription only) helped my cough too.

Do you think you're weight loss is due to anxiety and/or whatever's going on in your lungs?

When I'm anxious I can't eat properly. x

What abnormalities showed on your X-rays?

[Shonamackay in reply to GeorginaS]

Thanks that's useful info. With regard to weight loss I had an adverse reaction to drug ciprofloxacin which I think has left me with severe anxiety it really messed with my head! No appetite and eating less but have lost quite a lot of weight. My xrays showed infect ion and inflammation of airways one GP said bronchiestasis and another said let's not jump the gun here the radiographer doesn't know you have a hernia and acid reflux. Hoping the CT scan will give a more definitive diagnosis! X

[GeorginaS in reply to Shonamackay]

I usually get a report from the consultant and/or a letter stating findings. My GP just goes by what the radiography say as they analyse the X-rays.

I'm glad you know why you've got weight loss. I hate drug side effects.

Perhaps at some point you'll be given Prednisolone (steroids) that calmed my inflammation but I must admit it took them 18 months to get round to that!

I'd go back to your GP and tell her/him you're anxious. I got diazepam. 2mg twice a day but I only take 1mg a day. It's nice to know it's there.

When are you due for your CT?

[Shonamackay in reply to GeorginaS]

CT should be in the next few weeks apparently 6 weeks waiting time and that was an urgent referral! Been nice talking to you and your advice has been helpful. You take care might speak soon xx

[janice01]

Hi, your story is interesting because I have COPD asthma and bronchiectasis and developed gastric reflux due to taking alondronic acid tablets because of steroid use.

it's under control with 20my inexorably daily but as a Brompton patient I've been advised they will give me a 3 monthly Jab if on steroids for anything other than a short course.

They also give me a bone scan every 2 years, pleased to say bone density is normal for my age - mid 60s.

The bronchiectasis was diagnosed aged mid 50s after being on lengthy steroid and antibiotic use for a chest infection that failed to clear due to pseudonymous having colonised lungs.

My rescue medicine is 750mg ciprofloxacin twice daily for 14 days.

I've avoided hospital admission since 2004 - and wish you well.....

[carolg1 in reply to janice01]

Hi Janice, if I've read your reply right are you saying that steroids played a part in creating your reflux just wondered because I have terrible reflux issues along with bronchiectasis and am frequently given predisolone steroids, because of regular infections caused by the reflux aspiring into my lungs ? Thanks carol

[Hidden]

Hello Shonamackay and welcome.

Oh dear how confused and worried you are! and no wonder, one person tells you that you have bronchiectasis, another says maybe not. Somebody says it is caused by acid relux but you have been taking lanzaprozole for years.

Well you have come to the right place.

Firstly, you are the same person today that you were yesterday only you are closer to knowing what has been giving you your chest problems and hopefully getting on top of it all so that you can lead a normal life.

I am 67. I have had bronchiectasis since I was 3. I have had a very full life and I am still giving it plenty. So the future is good for you.

Bronchiectasis mostly develops as a result of badly treated repeated infections or pneumonia. The role that acid reflux has in exacerbating it is not sure but many bronchs do get it. More than likely because of having to take lots of antibiotics. Many people have had bronch for years but because it has been relatively mild ( unlike mine) it has never been diagnosed or has been misdiagnosed as something else.

First priority: getting a diagnosis. Bronchiectasis can only be diagnosed by a ct scan.

You need to see a bronchiectasis specialist, not just any respiratory consultant. Most general respiratory consultants ,like GPs, know very little about bronch and tend to treat it like COPD. Look on the internet for a bronch expert in your area. They are usually based at big teaching hospitals. Go to your GP with a name and don't leave until you get the named referral.When the appointment comes phone the consultant's secretary and very very nicely ask them to give you any cancellation that comes up.

Bronchiectasis is very complex and we are all different. It needs a combination of expert supervision and drug therapy and personal management and control. This is why you need a specialist to tell your GP how to treat you and a physio to help you deal with the daily self physiotherapy.My main relationship is with my consultant and her secretary. I just use my GP as a conduit to get my inhalers and any oral antibiotics that I need.

Cipro is usually given when a bug called pseudomonas gets into your lungs. It can make you very down ( as can all antibiotics) and I find that it makes me acidy. I have been taking 30mg lanzaprozole for several years. Before that I took 60mg twice per day for 3 years because my eosophagus was very damaged by acid. 30 mg keeps me going though.

There is a lot to tell you and help you with if you do have bronchiectasis.

The priority though is to get into the care of a consultant with expertise in bronch and a proper diagnosis.

Good luck, don't worry. It is very manageable.

[Hidden]

By the way, I am as skinny as a rake. I just burn any food up because my immune system is always going like a train.

[Sandy-]

I can't add much more than what littlepom has said. I too have a hiatus hernia, bronchiectasis and also asthma. I find it very difficult to gain weight, I am also very active. I take Azithromycin 3 times a week. The reflux from the hernia also makes it difficult to gain weight as I can't tolerate fatty food or large meals, but I try to eat as much as possible in the day. I find if I eat the wrong food or spicy/acidic food I have more asthma/bronchiectasis symptoms.

We are all different but have the same common goal in controlling our symptoms.

Best wishes.

[Lucybird]

Hia,

I also have bronchiectasis. I find that when my cough is worse I get a lot of acid reflux, is it a possibility for you that the cough is causing the acid reflux rather than the other way around? I find that as well as general antacids peppermint tea can be helpful for settling my stomach.

I had a lot of trouble getting my bronchiectasis diagnosed (basically went to the chest specialist I was seeing at the time crying because I was constantly coughing and my inhaler didn't seem to help) but since my diagnosis things have gotten better. I now see a bronchiectasis specialist and the exercises definitely help, the other thing is to make sure if you're coughing anything up you're not swallowing it (which I know can be a bit of a reflex especially when out of the house). Also you'll get to know when you have an infection so you can take antibiotics- your specialist should write to your GP to tell them what to give you, it's also helpful to keep some at home.

It is a bit of a scary thing but hopefully it will be a case of the diagnosis makes it easier to manage your symptoms.

[Salmo]

From the sounds of it you have had a cough for 2 years, chest infection and someone suspects it might be caused by acid reflux/hernia (but not certain) and there are now signs of changes in lungs based on X-rays ?

Sounds like there is a lot of guess work going on at moment so you need to get some clear information. However, if you have all of the above issues then something nees to be done so make sure this is not left to drag on as can often happen when you start seeing chest consultants and stomach consulants and they do not work as a team. Happened to me and outcome has not been good but hopefully you are in a better place and can get better treatment.

The HRCT scan should sort out what is going on in your lungs but make sure you are being seen by same consultant each time rather than passed around from consultant to consultant.

In meantime push to get the reflux/hernia sorted. Either you do or dont have it and if you do then you need to treat it as it is one of prime causes of serious lung disease. Gastroscopy or 24 acid monitoring will tell you what is going on - worth pushing for. If you have either problem then first make sure Make sure the chest and stomach consultants talk !!.

Drug treatment may need to be increased as lansaprozole once a day is probbaly not working. I have reflux and hernia and need twice daily PPI (lansoprazole type drug) and night time ranitidine as well as Gaviscon/alginate to achive any control at all. If you take a PPI make sure you take it in around 1 hour before food on a completely empty stomach with just a glass of water (ie no food at all). However, you must eat something 1 hr after taking (just in case you do not eat breakfast). Raised bed, small meals, cutting out certain foods also worth trying.

[Maureenclayton]

Hi I sympathise with your condition as I have had a hiatus hernia now for 20 years and I have never been told that it could cause lung damage and I now have bronchiectasis. I have also been told (by my GP) that my lung condition can be passed through family and my farther had this condition.i have had it for 4 years now and recently has got much worse affecting both lungs. I am awaiting to see a specialist in October and a physiotherapist to help with breathing exercises I take lansoprisol which keeps the hiatus hernia under control. I hope you find an answer to your problems soon as I know both conditions can very stressful, I will prey for you to have good results soon.

[Ramy22]

Hello.... I have just found this all really helpful indeed. I was diagnosed with bronchiectasis a year and a half ago having spent a year crying and coughing! My GP is brilliant and did a lot of research. Anyway I had a CT scan and then a test to see if it was related to acid reflux... there were X-rays of my swallowing. I don't suffer from that. What followed then was a year of continued coughing, infections and more crying and carrying on. I had chest infections every 3 weeks and my quality of life was rubbish. Then I was given a pari O pep device to clear my chest and that helped but still I got the infections. Now I have that AND a nebuliser that means I breath in salt water (there's a more technical term!) and this makes me cough but this means I'm well if I use them both twice a day.

I think we always need to cough! I now say that coughing is good but it can be controlled so I now clear my chest and then get on with my life. I haven't had an infection since July and I feel well. I hated Dr Lungs because I thought he had diagnosed and then thought his job was done but when he realised all was not well he acted soon it. He offered my 3 times a week antibiotics but I am sick of them.

Talk to you Doctor Lung and keep banging on! I am finding that controlled coughing is the way forward.

Wishing you all the best,

Mary

[Hidden in reply to Ramy22]

Hi Mary, congratulations on having a pro active GP and on excellent clearing tecniques which are obviously keeping you healthy. I hope that Dr Lungs is a bronch specialist because even when we manage to keep ourselves well most of the time, the little bronch boggart can jump up and get you when you least expect it. Don't be averse to aggresive antibiotic treatment when you need it ( and you will know) because these are the big guns which come in to fight the bugs and prevent further damage when they evade the daily clearing ritual. Usually from catching somebody else's virus. Good luck, keep going, you are a star.

[Ramy22 in reply to Hidden]

Hello😃

Thank you..😀. having had over 2 years of the nasty things I know I have to take nasty drugs to combat them and I know that they are waiting for an opportunity to get me!! I have all manner of antibiotics in the cupboard and I am still carrying co-amoxiclav in my bag!😒! What is working at the moment is this: blue inhaler x 2, followed by 15 minutes of salt nebuliser followed my the blower, flutter thing followed by the purple round inhaler (my use of medical terms is lacking). It takes time out of my day but it clears my chest and there's no squeaking and crackling to be heard. I haven't been ill for ages! Dr Lung is a bronchiectasis specialist, thankfully, and he listens, thank goodness. We'll wait and see... what I did learn is that coughing is good!!!! I hope you are well! 🌷

[Hidden in reply to Ramy22]

Brilliant! You've got all of your ducks in a row! Stay well!!

[Ramy22 in reply to Hidden]

Yep I have at the minute!😀 I will make hay whilst the sun shines.... I want to share it!!!

[varda1940]

It is possible to live happily with all these problems. just be active, take your other medicines without being over emotional about it. I suffer from all these problems and life is still rewarding and even happy. I still wander why you have got this specific medicine. Do you suffer also from asthma?

[Ramy22 in reply to varda1940]

Hello! Yes, I have asthma and the blue and purple ones are primarily for that... although I was given the purple one in response to the undiagnosed bronchiectasis (nasty cough assumed to be asthma I suppose). But even without asthma the blue one would open the airways to let in the salty stuff... I don't know but at the moment I think it all works so well (my life had become awful before) that I think we should all do it and maybe a combination of it (including the flutter thing) is the way forward!!! 😀

[carolg1]

Hi Shona, can I ask do you bring up a large amount of mucus up daily and if so how often and what is it like ? and what other symptoms do you suffer with, thanks carol

[Shonamackay in reply to carolg1]

Hi, bring up quite a lot of mucus mainly first thing in the morning, usually cream colour sometimes with slightly green tinge. Seem to cough more after eating and lately been coughing a lot more than usual x

[carolg1 in reply to Shonamackay]

Hi Shona, well mine started like that just first thing in the morning that was 4 years ago no one ever mentioned reflux till this past 18 months and the mucus has spiralled out of control , now they have discovered I have a terrible reflux situation that is also out of control and has and is doing a lot of damage to my lungs, so I really urge you to push for a proper diagnosis re both the reflux and the bronchiectasis, good luck. Xx carol

[Shonamackay in reply to carolg1]

Thanks Carol I intend to push as I am miserable at the moment and also now have high levels of anxiety. You say you have lung damage is it Bronchiestasis? xx

[carolg1 in reply to Shonamackay]

Hi Shona, I'm quite a conundrum I've been told but that is because of a lot of wrong diagnosis and consequently wrong meds, as littlepom says you really need to push for correct diagnosis , you don't want to finish up like me at 61 going on 91 lol not funny really but you have to keep laughing, I have bronchiectasis/emphysema and also a treated can on right lung, and I know have jackhammer esophogus so having a tough time at the minute xxx carol

[Shonamackay in reply to carolg1]

Sorry to hear that Carol you are certainly having a tough time, take care x