May I ask what the experience is on inhaling Colomycin please? I have been using this for a month now and how do I describe the lung clearance as being less than delightful - apologies, but this infection has been treated with IV’s and Infusions over two weeks, following up with Colomycin, then after a staph aureus infection, and now two weeks later, I now have Pseudomonas again. Tried Co-Amoxiclav and am now on Ciprofloxacin and still inhaling Colomycin.
I’m clearing lungs etc daily but the (sorry for graphics) sputum is absolutely foul. Still pain in lower lung and under shoulder blade.
Again, sorry for long post just feeling grotty.
I’d appreciate any ideas. It’s all complicated by uncontrolled asthma and these nebulising meds etc.
The hospital are really good and I feel that they are supportive but it’s just so long and on-going.
Keep well everyone and very safe.
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Annie04
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Hello Annie, I dont think I can help you very much apart from suffering with bronchiectasis. However, to answer your question, I was on colomycin for four or five years and as a result I have now been clear of pseudomonas for over a year now. I walk most days and use an acapella daily to clear my lungs. There are a few others on the forum who have a much greater understanding and knowledge of bronchiectasis so keep checking responses to your post as they will definitely be able to help you.
I do hope you get some relief soon. I assume its bronchiectasis, you have, so how long have you had it?
Thank you for your reply, yes I do have this and severe asthma.
In the last year it’s been constant various infections but these Pseudomonas it appears are more stubborn. I’ve had these three times now, they seem very difficult to eradicate.
That’s encouraging to hear you are feeling so well. Well done!
I do use my aerobika daily.
I was diagnosed in 2019 after admittance to hospital by CT scan.
Well, there are mixed views on pseudomonas. Some say once they are established they cannot be eradicated only suppressed with inhaled antibiotics like colomycin. My consultant has recently said she would like an up to date sample of my sputum to check what, if any bacteria, including pseudos. are present in my lungs. I'm crossing my fingers that all is well.Up until your diagnosis back in 2019 what symptoms were you having to be referred for a scan? Its just that you seem to be having a really rough time.
I was taken in with what I thought was a chest infection, my asthma had become much worse over a period of time and while I was in the CT scan showed up with infiltrates, (with nodules) and ABPA and full on pseudomonas with Bronchiectasis. After dragging myself around for three months afterwards it was decided to refer to a specialist. Henceforth, another one now and that was two years ago. I’ve had a variety of bugs growing and consistently on meds or IVs for these, staph and Pseudomonas. I had a bronchoscopy with Klebsiella and the latest has been as described. I don’t really feel any better I was always active and have not been able to resume much in this time. At present I’m being looked at with possible biologicals for asthma (high iEG 5000 when ill and around 1200 when good) Hopefully things will improve I’m always looking for positives somewhere. I think this group is fab, I try not to moan around friends and some family members as they don’t quite understand it all.
Oh please don't apologise. It helps to be able to discuss our problems and this Forum is, as you say, just fab! Littlepom has given you some excellent advice which you can use during your consultation. I always find writing down the questions I need answers to. Its a good reminder. Best wishes and let us know how your consultation goes.Cx
The antibiotics which you have been given are all pretty good at keeping pseudo down to levels that we can live with. However, you mention that they found klebsiella some time ago. Thus is an evil little gram negative bacteria which will not respond to any of the antibiotics which you have had which are for gram positive bacteria. It can also take up to 9 wks to grow in the lab and so is often missed. It does produce absolutely foul mucus. There are a couple of antibiotics which it responds to. Metronidazole being one. If your specialists are not bronch experts do go about getting a bronch specialist. You need specialised lab test to find what is causing the problem. GPs and general respiratory consultants are out of their depth. I hope that you get it sorted.
Thank you for this information, it’s very helpful. I am having an online consultation on Wednesday so I will be able to bring this up in conversation. Strangely, I was told Klebsiella was in my cells “squatting” was the term used.
Sorry I cant offer any advice on this Annie04, although I do have bronchiectasis it has been nowhere near as problematic as yours. I do hope you manage to get on top of all these bugs and get the correct antibiotic to wipe them out. I wish you well get better soon x
Best wishes, Annie. I hope you soon start to feel better- you really are going through it. Thank goodness for this forum where we can talk or moan and groan freely knowing everyone will understand. My autistic daughter has always been distressed by coughing, so bronchiectasis was not a good ailment to develop. I spent ages trying not to cough. She has reeducated herself now, but it was a long haul. Perhaps your family and friends will gradually come to accept that you need to talk about your problems.🤞🤞🤞xxx
Hi Anni. I don't have bronchiectasis so cant be of any help. I just wanted to say that I hope you get some action after your phone consultation and start to feel better soon. John
I too have pseudo..I’m on Colistin nebulized every other month..mine is colonized..meds allow me to live an almost normal life..tried irradiation but didn’t wrk probably because they used Cipro, tobramyacin for 3 months..no IVS
Hi Annie04. It might be worth getting another blood test to check if you have a different bacterium and therefore you need a different antibiotic, also a tip I was told to just take the water saline that you take to dilute the collomycin on its own it helps bring up your sputum get well soon
Thanks for the tip. On mixing this I use 0.9% injection sodium chloride and Salbutamol, strangely I was not recommended to use my 0,9% nebulising one and my GP (on instruction) has arranged for these glass phials which go into my sharp box and syringes from hospital, it’s a bit of a phaff at present. Still, at least it’s manageable. It’s the dreadful sputum after clearance beforehand, it’s obnoxious. Even after using Colomycin it’s still yuk! Still, will ask and see if the lurking bug is present.
Would be ironic if Klebsiella is hanging on in as well. Lung party 🎈
Well Annie l have C.O.P.D. & Asthma amongst a couple of other things,have had a very healthy life until my early sixties.Which l found most annoying,still l digress ! Not having the same as you,but still a lung problem,and if l sleep on my left side find l have a severe pain in the ribs and the chest on that side.Obviously l do not lay on that side unless l move in my sleep !! Now l have been taking Amoxicillin for years,1 morning and evening ,do not have much phlegm to speak of and now rarely have exacerbation's.
Do not know if this can help you but certainly has me,as l was spending most days at Hospital or being picked up by Ambulance and having a week or more there. Worth a try !!!
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Pseudomonas Infection - colomycin nebs
