Pseudomonas Infection - colomycin nebs

Hi, back in July I was diagnosed with pseudomonas lung infection, it was found in sputum sample following an infection that wouldn’t clear. I had ciprofloxin first, then my respiratory consultant prescribed 3 months of colomycin nebs - I’m due a review next week and just wondering what to expect? Thanks

[Damon1864 Volunteer]

Hope all goes well Lottie, have a good day and take care 😊 Bernadette and Jack 🐕 xxxxxx

[Hidden]

It depends how you feel in yourself and how the mucus is. Once pseudomonas is in there it lurks. Even if not showing on a lab plate. I have lived with it since 1986. Becoming fixated on eradicating it from tests is tiresome and bronch specialists know that it isn't possible. The aim is to keep the numbers low enough to live a normal life. Nebulising abs is good at this if your lungs don't react by making you tight and wheezy. Sometimes the speudo overcomes the nebbed abs and gives trouble. Then cipro or IV abs usually get the numbers down again. Hopefully, if you are well and tolerating the nebulised colomycin your consultant will prefer that you carry on on a long term basis. I hope that helped.

[Morrison10]

Hi, I’ve had pseudomonas on and off for over 25 years. Originally had other infections too, and had six courses of intravenous antibiotics done at home over period of three years. Then on holiday soon after last iv. was taking two oral antibiotics together, stayed on them longer than intended on holiday when friend staying at same guest house arrived with bad cough, sore throat etc. Afterwards my lungs were cleared, didn’t need any antibiotics again for 46 weeks, although my liver was slightly damaged, but has recovered. Over last few years have had few pseudomonas outbreaks, usually quickly solved. This year now I’m older, and because born with PCD, (see definition on here) had pseudomonas and other nasty infection, was going to have I.v. Antibiotics in autumn, but had to go to hospital to be set up, and not allowed to drive afterwards. As widow living alone, my younger daughter was going to take me, but 3 days before her horse threw her off, she has bad broken leg and ankle, had operation when swelling improved to pin and plate it, can’t walk without crutches, can’t drive, told will be next spring before hopefully it’s ok. She doesn’t have partner nor children, use to come help me, miss her lot, and am still battling pseudomonas. Have kept own antibiotics for very many years, as important to start when systems appear. Good luck.

[Patk1 in reply to Morrison10]

I hope yr daughters leg heals well.could u have some time staying with her,and her with u? X

[Morrison10 in reply to Patk1]

Thanks for good wishes, unfortunately not practical.

[Sarahk1000]

Hi lottie36

Research! Research! Research!

No doubt you have researched this bug and probably know far more about it then any of your doctors looking after you.

What to expect?…..

Expect half ass answers when you go for review. Be armed with a list of questions for them because they won’t give out any information unless they have to.

You will probably get a 20 minute appointment where most of that’s taken up by name and address checks rather than anything else.

Have they done a recent sputum test?? This will enable your team to know the numbers of bacteria you have remaining and how long (or not) you continue treatment. If they haven’t got those results then don’t expect much at all at your appointment.

I’m in exactly the same boat as you. Although I caught the bug in July and told my GP exactly where I thought I caught it (gardening ) he dismissed it basically thinking “what does she know”.

, I went 3 months with this infection before my lung doctor finally tested me for it but alas it’s too late for me. It has destroyed the last piece of my lung and the really bad thing is they started me on treatment mid October then let me run out of one of the only drugs keeping me alive for a week allowing me to become sick again.

Did you find the colomycin took a couple of weeks to kick in?

Much love

Sarah xx

[Hidden in reply to Sarahk1000]

Hi Sarah, thanks for taking the time to respond to me 😊. I’m hopefully getting reviewed later this month and have to send a mucas sample now that I’m off the colomycin. I have noticed that I’ve been having temperature spikes again, and am coughing up rubbish again and have a foul taste in my mouth as well! I’ve done lots of research like you said, but generally find it difficult to get the consultant to listen and am concerned that if the sample shows no pseudomonas that they’ll assume they have been eradicated, but from what I’ve read they’re extremely difficult to clear and also good at hiding from your samples! I had my infection in July, but I’d been unwell for a couple of months before it was picked up and didn’t start the colomycin nebs until September so to me, realistically it seems unlikely that they’re gone 🙈 How are you getting on? x

[Sarahk1000 in reply to Hidden]

Hi lottie

I did reply to you some days ago but it seems to have vanished. Maybe I didn’t hit the send button.

If you do get a negative result then be suspicious but you already know that haha. And the best you can do is keep on checking for those temperature spikes .

As for how I’m doing? Well not so good if I’m honest. My temperature has been increasing even though I’m on my second rescue pack of antibiotics and a different one has been added. I think all the messing around I’ve done with the colomycin has probably made the pseudomonas resistant to it which is the absolute last thing I wanted to happen as the next step would be IV colomycin I think. I’ve had no luck at all with this drug. Everything has gone wrong from the moment they finally diagnosed me. It feels like everything and everyone is against me. My GP doesn’t care. My pulmonary team do not care. My so called friends do not care and have disappeared. Even my 3 remaining children at home seem to not care and are planning to move out ASAP because they can not handle my negative attitude anymore.

I’m seriously thinking I need to be in a hospice at this point because I can not deal with myself. I barely eat, I barely sleep or I sleep too much and then take a day to wake up properly.

The only real escape from life as I know it now is to come on here where I know others have the knowledge of what I’m going through and all the mixed emotions we go through.

Please do let us know how you get on with your tests. I’m due mine at the end of this month but they may be delayed because I haven’t had a full months course on it yet due to all the mistakes with my prescriptions. I finally got my saline after 3 months. The NHS is such a joke

xx

[Gardeningdays]

I was diagnosed with pseudomonas in Spring following a Staf Aureus infection, I was given Ciprofloxicin and IV ceftazadime for 2 weeks, it was apparent in following sputum samples the pseudomonas was still there and was getting worse again. Eventually I was admitted given IV Meropenem and pit on Colomycin nebulised. I was given a break in September and back it came with 2 weeks. I was put back on the Colomycin and will be using it throughout the winter. The most important thing you can do for yourself is clearing the lungs twice a day, this really helps with my breathing overall. They will test again in the spring. It seems to be something you have to learn to live with but lots of exercise and lung clearing definitely helps