hiya just wondering but do any people with ccf find they have more problems with there chest then there bowel or more with there bowel then there chest . i find that it is all in my chest as i have never had any bowel problems . i had a ultra sound once and the doctor thought i had gallstones turned out it was a bit of chewing gum i had accidently swallowed LOL . it would be interesting to here your views from JO
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I used to have no problems with my lungs at all when i was younger and just very minimal problems with my digestive system. When i was 15, i developed cf related diabetes. Then as i got to be about 18-19 the lung problems started , but only very minimally. A cough here ..a cough there ..and that was about it. The first time i coughed up some blood , i was about 20 or 21 years old, but still yet not having any real lung problems. I stayed relatively healthy till i had sinus surgery 8 years ago.... THATS when it all changed !
I went in the hospital feeling great and left feeling crappy and never seemed to feel well again. Then odd symptoms started showing up , like low grade fevers that hurt all over, every day around the same time. EXTREME fatigue to where it was a major undertaking to just get off the couch and into the shower. The constant coughing started and the endless congestion, and never ending infection that seemed to be sitting there constantly waiting for every opportunity to sneak in and do damage. Then i was diagnosed with b.cepacia. Well, things have changed since i was younger with no lung problems .... to being older WITH lung problems. Still have very mild digestive problems so thats good. The b.cepacia is somewhat under control at this point (Thank God). Had some terrible hemoptysis problems 2 years ago that required 2 embolizations , that scared the crap out of me so bad that, i still wont lay down flat. I look forward to the day we find a good solution to handling cf with better treatments that knock the crap out of it.
~Diane 39 / cf / diabetes / b.cepacia
I went in the hospital feeling great and left feeling crappy and never seemed to feel well again. Then odd symptoms started showing up , like low grade fevers that hurt all over, every day around the same time. EXTREME fatigue to where it was a major undertaking to just get off the couch and into the shower. The constant coughing started and the endless congestion, and never ending infection that seemed to be sitting there constantly waiting for every opportunity to sneak in and do damage. Then i was diagnosed with b.cepacia. Well, things have changed since i was younger with no lung problems .... to being older WITH lung problems. Still have very mild digestive problems so thats good. The b.cepacia is somewhat under control at this point (Thank God). Had some terrible hemoptysis problems 2 years ago that required 2 embolizations , that scared the crap out of me so bad that, i still wont lay down flat. I look forward to the day we find a good solution to handling cf with better treatments that knock the crap out of it.
~Diane 39 / cf / diabetes / b.cepacia
Hi there, I'll answer for my boyfriend (as I don't have cf and he barely speaks English, let alone write it!). He doesn't really have problems with his lungs, he has more problems with his digestion (henow has to take 9 cotazyms ECS-20) for each meal and tons of problems with his sinus (going on his 13th operation soon). He used to have more problems with his lungs (like not being able to go up stairs) but he went to the gym for a while and it really helped!
Amélie
Amélie
AbsintheSorrow
New member
I had more digestive problems when I was in elementary school and less lung. Now that I'm older I have about the same for digestive, and the lung problems are starting to kick in. But I've always had a good deal of both.
hiya diane wot is b. cepacia i have never heard of it ? the first time i coughed up blood was the end of last year and i was screaming cos that had never happened to me before . i never had any problems with my CF until i turned 13 and then i was in hospital but after that i got every bug that was going around then when i was 16 back to hospital again and i was well again for 2 yrs then all started again last year just before xmas i was back in again age of 19 and when i came out i was worse because they did not know how to look after cfers so 8 days aftre my 20th i was back in again but this time it was in a hospital that deals with cf and i was shown how to do my meds in my line and allowed to go home in time for my auntie wedding and so far touch wood i have benn cough free for a month and a half now hope it lasts . but i guess i am lucky cos i know that alot of other people with cf are in and out of hospital there whole life good luck to everyone else with cf i pray everyday they will find a cure best wishes from JO xxxxx
I have barely any digestion problems whatsoever. What is weird though is when I was younger I did, that is practically why I was diagnosed, I was on enzymes until I was about 12, and then I didn't need them anymore and havent since. I never take enzymes and never have any problems. However, I do have lung probklems, much more in the past 2 years or so than before...I have b cepacia too and also have had problems w/ coughing up blood recently like diane though not a great deal so no embolizations (knock on wood).
Caitlin
Caitlin
my brother and i both have CF and he has a digestive problem and hardly any lung problem at all. i have a lung problem and i use to not have much of a digestive problem, but i am starting to. my brother just turned 16 sept. 16 and i just turned 17 about a month ago. i have never been in the hospital for anything CF related, but I am pretty much on antibiotics all the time. my brother hasn't been in the hospital since he was a baby and it was before they knew he had CF. the docs thought my mom was starving him. she was going to be arrested. i never hear him cough, but i cough all the time, whether i'm sick or not. we do the vest, but i does me more good than him b/c he doesnt really need it right now. he also has tons of energy and for me it is hard to get off the couch. my mom always calls me lazy b/c she doesnt understand how tired i feel, no matter how much sleep i get. i try to tell her it is CF related, but she doesnt seem to believe me. she trys to ignore the fact that we have CF. she does, however, make sure we do all of our medicine. if we don't, momma and daddy both fuss at us. i gets annoying sometimes them always nagging us, but it's for the best.
sara 17 w/cf
sara 17 w/cf
Hi
Both my brother (20) and I (23) have CF. I have always had more lung problems and just recently (this year) started taking enzymes to help with digestion. My brother since he was little has had stomach problems, currently he's up to at least 9 enzymes with his meals, and he still is loosing weight, but had little lung problems. However, for the past year 1/2 my brothers lung function has really gone down-hill. No one can figure it out? He went from playing basketball and lifting weights to now needing O2 and barely being able to walk up steps.
I just don't understand why some people have it worse than others?
Both my brother (20) and I (23) have CF. I have always had more lung problems and just recently (this year) started taking enzymes to help with digestion. My brother since he was little has had stomach problems, currently he's up to at least 9 enzymes with his meals, and he still is loosing weight, but had little lung problems. However, for the past year 1/2 my brothers lung function has really gone down-hill. No one can figure it out? He went from playing basketball and lifting weights to now needing O2 and barely being able to walk up steps.
I just don't understand why some people have it worse than others?
I also had mostly digestive problems when I was younger (it all started @ birth w/ mec lieus obstruction) I have been on enzymes since birth. As I have gotten older my lung problems have increased with IV antibiotics needed about every three to four months. When I was younger I used to just be able to take oral antibiotics but now they don't work at all for me, the only thing that works is IVs.