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odour

anonymous

New member
Hi everyone,I have a boyfriend, 34yrs with CF and he doesn't like to talk too much about it. I have q question about the smell of his cough. It is really foul, and I have noticed it gets better when he is on IV antibiotics, but this only lasts a couple of weeks. Is the this normal, or does he have an infection?Thanks
 

Diane

New member
I am going to assume that your boyfriend being 34 with cf most likely has pseudomonas aeurgenosa which is an infection that doesnt go away. It is treated with antibiotics orally and when it gets a bit too out of hand it is treated with iv antibiotics. He may have other lung infections as well, and i would imagine there alwas the possibility of an odor with any given one of them. I have noticed in the past that when i have a bad sinus infection that i can actually smell it. When it starts to ease up the smell goes away. Same thing thats probably happening with your boyfriend, when he goes in iv antibiotics, the infection gets knocked down to a more managable level and the odor goes down as well. Hope this helps a bit<img src="i/expressions/face-icon-small-smile.gif" border="0">Diane 39 / cf / diabetes / b.cepacia
 

anonymous

New member
yeah thats abnormal sweetie maybe u shoulf dump th dick maybe u should find a healthy baby darling love from poo and piss
 

anonymous

New member
No, you're what's abnormal P&P. How childish. Get a life<img src="i/expressions/face-icon-small-disgusted.gif" border="0">
 

anonymous

New member
I am an adult male (40 years old) with cystic fibrosis. I have never ever detected an odour specifically regarding my DISEASE, however as in the first answer you received from Diane (I think her name might have been--in fact, it probably still IS her name), there may be more to it than just the disease itself.There ARE several medicines, mostly antibiotics, upon which I have been placed from time to time, that HAVE, in fact, created different odours in and about my person. One antibiotic in particular is called ceftazadime. It's an i.v. antibiotic, but it makes my urine and breath smell something fierce. In fact, interestingly enough (not that you really want to know this), ceftazadime makes pee smell exactly like a bowl of Kellogg's Sugar Smacks breakfast cereal, no kidding. I think that cereal nowadays may be called something else---Maybe "Smacks" or something to that effect (I imagine the word "sugar" didn't exactly draw a large customer base in this health-conscious society of ours).Anyway, another drug which makes my mouth and breath smell so bad it could knock a sick buzzard off a dump truck is an antibiotic called tobramycin, another i.v. med. It isn't the drug though, that offers the odour. What DOES cause the odour is this: when one is put on potent antibiotics or maybe several antibiotics at one time, the drugs can work too well. What I mean is this: Potent antibiotics are intended to kill bad bacteria in one's body. Unfortunatey during the process, they often kill the GOOD bacteria in your body as well. One place in particular that's teaming with bacteria is---you got it---one's mouth. When this happens to me, I tend to get a mouth infection called "thrush." Thrush (that's not the technical name) can be very painful and encompassing. But it can also be mild and virtually undetected. In my case, the problem is that Thrush, regardless of whether or not I've a mild or serious or undetected case, makes for some potent parlance, Herculean halitosis, puke-inducing prattle.It seems, by your letter however, that he tends to get the foul breath when he's NOT on antibiotics. Cystic Fibrosis is, as you know, also a disease that affects the belly as well as the lungs. Bad digestion, caused by anything, is most often the cause of chronic halitosis. So it may very well be that when he is sicker (i.e.: not on antibiotics), he is not digesting his food as efficiently and thus bringing up his wicked wind, so to speak.This probably doesn't help you much, but maybe someone might benefit from the information above.Over and out.pfrenzel@mn.rr.com
 

anonymous

New member
Hello,My boyfriend mentions that when i am sicker my breath gets bad. Sometimes he has a very hard time sleeping in the bed with me. The horrible thing to add to it is that he also hates the smell of mint, so i can't even use mouth wash to tame it a bit. At times i can taste it, when it gets worse, it tastes twice as bad as it smells. I always remind my boyfriend and friends about that if they complain about the smell. I am mean about it, i spit it into a tissue and tell them to lick it, ha ha. That usually shuts them up. Don't think i am saying you are a bad person for asking this, i am quite happy you asked about it and didn't just tell him he stinks and to do something about it. TTYL
 

anonymous

New member
pfrenzel, that is all very true. When i am on Cefepime and Tobs my body emanates a stench similar to cat's pee- even the nurses warn you of it. Lavender oil in the bath helps reduce the odour thru the skin. Quite a few ABs give me strong smelling pee, and only regular baths help clean up the remaining odour from that. When brushing the teeth, brush the tongue as well, it helps heaps. Bananas in Pyjamas (Aussie kids show) toothpaste is banana flavoured, better than mint, and Listerine etc really helps too. Otherwise, Eucalyptus oil on the pillow or sprayed in then air at night can overcome the smell with your partner and opens up your airways and smells gorgeous.Good luck and don't let it get you down.Cindy
 

anonymous

New member
Thanks to pfrenzel for sharing that your urine smells like 'Smacks' I noticed this also many years ago and thought I was a bit silly. I thought it unbelievable how much it smells like Smacks, but never something I shared cause I thought I was goofy. Maybe it is along the same reason as some people's urine smells after eating asperagus. Blessing to you all.S. 26 Female w/CF
 

anonymous

New member
I am so glad you guys had this discussion. I, too was recently on IV's and I can't smell things unless they are very strong (i.e. gas, very few perfumes, etc), so it is nice to know to take precautions to help with smells that I may have that I didn't know about. Now I'm embarassed that I may have "smelt" and didn't know it<img src="i/expressions/face-icon-small-blush.gif" border="0">Has anyone else lost their sense of smell at all?
 

Diane

New member
YES! I also have almost no sense of smell. It seems my sense of smell works whenever it wants to. When i had sinus surgery 7 years ago i remember the doctor saying i might regain my sense of smell , after having the polyps removed and my sinus's opened up. Well i never fully regained them back, and i have learned to live with it. It can be embarrassing when i have company and the cat litter box smells bad,and i have no idea about it. Or of coarse when the kitty decides to leave a "welcome package" in the litter box for all my guests to "enjoy" and i am the only one who doesnt know about it and wonder why everyones looking at each othr funny.........lol .Diane 39 / cf / diabetes / b.cepcia
 

anonymous

New member
Well, it's nice to know I'm not alone<img src="i/expressions/face-icon-small-tongue.gif" border="0"> I know what you mean about not having a sense of smell sometimes being embarassing. I always wonder if my house smells OK or not, etcYou mentioned you're 39. I'm 37 and just entertaining the thought of transplant, have you had one yet or plan to??I, too have diabetes and take Prandin pills w/ meals & it seems to work OK to control my blood sugars, except that at times it bottoms out & I get the low sugars, which as you know isn't fun. I just remember to eat about every 2-3 hours and don't take one at supper so I don't worry about low sugars at night.
 

Diane

New member
Hello, In answer to you question about transplants, no i havent had one, and gosh i pray to never need one. But, I have already made my decision not to have one if it ever comes about . When i was diagnosed with b.cepaci my nurse told me that a lot of transplant centers dont like to transplant patients with cepacia because they usually do not do well with it. A lot can go wrong and i also have diabetes and that may be a problem as well. Now i know of patients that have b.cepacia that have had ransplants and are doing very well, but i feel that i will not survive and i dont want to put my family thru what i feel is like 2 deaths of mine. What brought me to this decision is a pet that i had that i loved like my own child. He was sick and dieing, from what we thought was an intestinal blockage. The vet said we could do surgery and remove the blockage and he may be fine , but if we did nothing he would certainly die within days. OF coarse i opted for the surgery ,and sat with my mom in church crying and peading for his life while he was in surgery. He survived the surgery, and i was so excited to bring him home the next night. Whe the vet brought him out to me to take home i could clearly see he was waiting to die. i took him home and sat with him, with high hopes, and watched as he looked left, then right then lay his head down and never move again. That experience killed a part of me and i never forgot it. I remember how hurt and torn i was knowing he was going to die, then being excited because there was hope that he wouldnt , and then the big crash when he died anyway. I decided that i just cannot do that to my family. In the back of my mind i have always believed i would not survive a transplant, I dont know why i have this feeling, but i just know it wont turn out in a good way. I am prepared to let God decide when my life ends, i just pray that it wont be horrible. Watching my animal die before my eyes made me realize that even with the best of medical advances, if you are meant to go.... you will go. When i read transplant stories that turn out well, i am so inspired and so happy for the recipient. But when i read a story where things went badly, i feel that story may some day be mine, and i dont want to do that to my family. I did everything in my life that i ever wanted to, lived all my dreams, and i have a lot more living i intend to do. When the end comes i hope i can accept it, and have peace. Well i feel like i have written a book here....lol Take care, any more questions,,,,, feel free to ask. jinxnick@aol.com ~Diane
 

anonymous

New member
Thanks for that insightful response. I have so many of the same feelings. I don't have time to respond now, but will email you this weekend. I'll put CF or something like that in the subject so you'll know it's not junk mail. <img src="i/expressions/face-icon-small-smile.gif" border="0"> God Bless
 

anonymous

New member
I also concur with the 'sugar smacks' theory, as intravenous antibiotics manifest themselves in the same symptomatic manner in my person. I might also add that a person afflicted with pseudomonas aeruginosa or burkholderia cepacia, by virtue of heavy growth of said infection, will emit a foul odor in and of itself. That is to say, the secretions will have a malodorous emination. I presume this may be the source of your partner's 'herculean halitosis' since that particular symptom subsides for the duration of his treatment, only to surface again when he incurs another exacerbation. Thank you for indulging in my conjecture.~XD
 
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