colomycin nebulising difficulties

[angie26]

Hi after taking a wedge from my lung I was diagnosed with TB!! I was operated on as it was assumedI had a secondary cancer from a previous breast cancer. not so!!! ever since I have had one infection after another and have ended up with pseudomonas and another a typical bacterial going on, I have had 2 weeks of IV tazocin and am now on colomycin nebuliser, finding the nebuliser a bother cannot seem to empty the meds supposed totake 5 minutes, I'm still there 15 minutes and more, anyone else having this problem?

[Billiejean_2]

Hi Angie ! I use nebulised Colomycin as well and it takes about 10 minutes at least. I know there is a specific nebuliser you can get that speeds the process up dramatically but I can't remember the name of it. When I mentioned that my nebuliser took a long time to the physio in the hospital, she said that Colomycin is meant to take that long. At this stage I just let it take as long as it takes and read or check my phone while it's going through.

[angie26 in reply to Billiejean_2]

thanks, funny how different people tell you different things, my nurse says 5 minutes!! so I'm thinking I'm not doing something correctly! onwards and upwards!!

[Hidden]

Hi angie26. I have nebulised several different drugs. I find that they all take 15-20 minutes. There is a form of colomycin which can be nebulised in five minutes through an ineb. My consultant has one patient on this. It has to be prescribed as a special case because the ineb and the specialised form of colomycin are very expensive. She won't give it to me because colomycin made me cough and breathless after about two months. I nebulise ceftazidime at the present.

[angie26 in reply to Hidden]

Oh thanks for that, how long have you been using the neb? initially I'm on it for 3 months and then ct, bronchoscopy and sputum tests, I was also told by one of the nurses that it would be indefinitely. touch wood no side effects as yet but only just started.

[Hidden in reply to angie26]

I have been nebulising different antibiotics since 1982 on and off. In fact the first drug that I 'nebulised' was penicillin through oxygen for six years when I was a child in the 1950s. It is used to try to keep the numbers of the particular bug in the lungs as low as possible in order to prevent having to take oral antibiotics or have IV. It just depends which drug you tolerate best and which bug is in there. I hope that you tolerate it well and that it helps. If you have problems make sure that you get in touch with your consultant because I'm afraid that GPs know very little about bronchs and their treatment. Good luck.

[James48]

Hi, Angie, there is an antibiotic called Gentamicin which is also recommended for pseudomonas. It is less hassle to nebulise than Colymicin but not everyone tolerates it. When I had pseudomonas, which is in remission at the moment, it took about 8 weeks of nebulising twice a day to get rid of it.

[angie26 in reply to James48]

Thanks James glad yours is in remission, I'm doing twice a day and just started, it seems like it takes forever, I also neb with ventolin prior to doing the colomycin so its double time, I suppose I will get used to it in time.

[Pinkstar2973]

My daughter who's 7 nebulises colomycin and it takes at least 10mins . We use a Pariboy nebuliser . I think that's about average time for how long it takes x

[Billiejean_2 in reply to Pinkstar2973]

I use a parineb as well and 10 minutes is about average. To prevent bronchospasm, I neb ventolin before hand, which takes another 10 minutes. So all in all, between setting up, nebbing and washing the pieces afrerwards, the whole thing takes me about 40 minutes a session. If you're going somewhere in the morning, it's a bit of a nuisance, so you need to be up early to avoid rushing. You get used to it after a while and it just becomes part of your routine.

[angie26 in reply to Billiejean_2]

Thanks for the reply, yes it is quite a time to get used to it all, perhaps it well become second nature soon! I have 2 sets of things to wash and dry, do you use anything to sterilise?

[Billiejean_2 in reply to angie26]

I boil for 10 minutes with a little washing up liquid in the water, once a week. After daily use, I just rinse them in very hot water and let them air dry. I have thought of getting a small steriliser like the ones used to sterilise babies bottles but for now the boiling and rinsing seems to be working okay.

I know how you feel about the time involved. When I started doing this regularly in 2014, I was nebbing 7% saline as well. The three together used to take me more then an hour and it drove me crazy.

One thing that helps is to be organised beforehand. I now keep a box of Colomicin on the little table I use for my nebuliser. All the 'mixers' are in the plastic, zipped container I keep my meds in and the bits are on the plate I left them drying in. So before sitting down, I have everything I need to hand. This is a huge help as it used to take me about 10 trips in and out to the kitchen and endless foraging in bags and cupboards to assble everything I needed. We live and learn

[angie26 in reply to Billiejean_2]

I will try the boiling too ! I have to mix my powder Colomicin with saline and it is difficult to mix in the tiny bottle! hospital said not to shake it but get a toothpick and swirl it round, I am a but concerned as whatever I (swirl it round ) with won't be sterile! must ask next time I speak with them! yes you are right I have all my equipment I need together and it does make a difference, started like you did at first so had to have it all organised!! Gosh you started in 2014, do you have pseudomonus too?

[Billiejean_2 in reply to angie26]

I've had Pseudomonas twice. Around 2002/03 and then 11 years without it until September 2014. I haven't tested positive for it since then but am now taking Colomycin to prevent the Pseudomonas and other nasty bugs recurring.

There's no need to swirl the mixture with anything. When you've poured in the liquid and replace the cap, put the bottle between the palms of both your hands and roll it vigorously backwards and forwards for about 30 seconds. Then leave it aside and by the time you've finished doing the ventolin the powder will have dissolved. If there's any little lumps of powder left, then give the bottle another roll. That should work perfectly for you.

[James48 in reply to Billiejean_2]

Hi Billiejean, that was a long time between bouts of pseudomonas. I understand it's stays in the lungs. Do you know why it became active again after all that time? Are you nebulising Colymicin every day, twice a day?

[Billiejean_2 in reply to James48]

Hi James, actually I got the date wrong. It was Sept 2015, it recurred,so 12 years without it.

for about two years prior to the pseudo re-appearing, my condition was deteriorating with almost constant infections, a lot of pain and sob. My consultant was suspicious of Pseudomonas and says that sometimes it's there and they just can't pick it up. In 2014 he put me on Colo twice daily ( in case it was there) but far from helping me, I just felt worse and worse and was convinced that the Colo was making me sob. I gave it up and a few months later started on a run of all the bad bugs. When PM showed in 2015, I went back on Colo + oral Ciproxin for a month and since then I haven't tested positive for PM. However, I went on to develop Achromabacter which took five months to clear and since then, I've remained on Colo. I now have a completely different attitude to it and feel that taking it prophylactic ally is protecting me from the bad bugs. I now take 1 of the little bottles twice daily, where in the past, I used to take two doses twice daily. My consultant conceded that maybe that dose had been too high.

Some people say that PM never leaves you completely but is there in amountssmall enough to not cause problems. I've also heard that it can lurk in the nasal cavities and re-infect from there.

Good luck with your eradication !

[James48 in reply to Billiejean_2]

Thanks for the reply Billejean. Between 2012 and 2014 I had 23 infections. I was hospitalised in early 2014 with pneumonia/pseudo which required IV antibiotics to clear it. I've been infection free for about 18 months and to read you've had 12 years free gives hope that it might not return for a good while. Wishing you continued better health.

[Billiejean_2 in reply to James48]

Thanks James and wishing the same for you. For those 12 years I was free of Pseudomonas but still carried on having chest infections every few weeks. I hope you can keep your levels down and if it does recur, try Cipro for a month, in addition to the Colo.

[angie26 in reply to Billiejean_2]

Thank you

[Hidden in reply to angie26]

I use cocktail sticks to mix it up. Just drop 1 out of the little hole in the plastic pot, may not be completely sterile but near enough (like newspaper?).

Also because I have had ongoing Proteus infection this year I have started using Milton to sterilise the nebuliser.

The saline ampoules for mixing are usually 5ml, sometimes 10 ml. You only need 4 ml if on 2M unit colomycin, will take longer if you use more. Also can take longer if the compressor is failing or needs a change of air filter.

I'm pleased if I get it done in 15 mins.

[angie26 in reply to Hidden]

Thanks I will get some cocktail sticks, not sure what Proteus is I have Psuedomonus. the compressor is new so should be OK, maybe I am not measuring the saline properly, I'm sure it's a 10ml that I have. I'll measure one in a spoon for next neb to check if I'm doing it right X

[angie26 in reply to Pinkstar2973]

Thank you, bless her only 7, tell her she's a real star. Hospital told me should only take 5 minutes but I know different now!!

[Pinkstar2973]

Thank you angie26. Colomycin has been the only thing that helps with her , fingers crossed you get great results with it too x