Colomycin

[Udagga]

Have been really trying to cope with this stuff after stopping for a while at Christmas and then having the pseudomonas return. But after 6 weeks I need to stop. Tighter chest and my lungs clogging up and rattling with phlegm as the day progresses. Stuck between the devil and the deep blue sea! I have a consultant appointment in 2 weeks thankfully at the QE here. Great consultant, great NHS but feel stuck in between appointments what to do when things go wrong. Bronchiectasis is relentless at times. I don’t like ringing my consultant’s secretary and being a nuisance.

[cofdrop-UK]

Hi Udagga, Ringing your cons sec is NOT being a nuisance and it is important that you do to either get advice about this.

I was fine at assessment with nebbed Colo but gradually became so breathless that I couldn’t put a sentence together and my GP sent for an ambulance. I would add though that along with lifelong bronchiectasis I also have asthma.

Please get this sorted and forget all this ‘nuisance’ stuff - it’s not helping you.

Good luck

Cx

[Udagga in reply to cofdrop-UK]

Thank you. I seem to have developed asthma as well this past year. X

[Hidden]

I am at the QE in Bham, don’t know which one you are at. I had my second try at nebbing colomycin just before Christmas. I managed 12 days before I became breathless and the mucus like toffee. So I gave up Jan 1. I nebulise isotonic saline and ventolin twice a day since then. Saw the con last week and she said I am clearer than she has heard for several years! There is no accounting! I always have the option of going back to nebulising ceftazidime which I have succesfully done on and off for about 18 years. But I am giving it a rest for now. Pseudomonas never goes away completely but the aim is to keep the numbers low enough to allow you to live a normal life.Don’t worry about ringing the con’s secretary. That’s what she is there for.

[Udagga in reply to Hidden]

Thanks for this and yes in Bham. How lucky we are with that place and consultants etc.

[Mooka]

Hi Udagga

I have nebulised colomycin for pseudomonas since last summer. At first I had the same problems you are having but immunologist added in salbutamol and was surprised this wasn’t added in at the time. Solved all the problems straight away. Don’t put up with it the solution for you could be just as easy. Good luck x

[Udagga in reply to Mooka]

Hi Mooka. Do you nebulise salbutamol? Or use an inhaler?

[Mooka in reply to Udagga]

Hiya

Salbutamol goes in the nebuliser together with colomycin and budesnide twice a day. I hope you can get some answers from your doctor x

[Udagga in reply to Mooka]

Hi

Thanks. That’s very helpful. X

[Udagga]

Thanks everyone. I’ve spoken to the secretary today. I’m very aware of how busy they are at the hospital and tend to try and soldier through stuff. Anyway high fives from my nurse for getting my blood pressure back to normal this morning.