CF SUCKS!!!

[Cutecurlz]

<img src="i/expressions/face-icon-small-disgusted.gif" border="0"> Hi! 36 yr old female with CF. I just want to vent. Why is it that everytime I/We go to the doctors for something as small as a cold I always hear..."Well because you have CF...."???? Because I have CF? I know I have it. I am soooooo tired of hearing that just because I have CF I have to be extra careful. What if I fell and srcaped my knee? Well because you have CF we have to be careful?? Pleaseeeeeee!! I live in ONtario and FYI....the CF clinics out here SUCK!!!! I have an appointment the 6th of October. I asked if I could get an earlier one.....of course NOT!! They only have CF Clinics once a month out here. I tried to make an appointment just with the CF doc....can't do that either unless I take time off work, can't afford to do that either.

My concern with my health right now is all the eccess bloating and gas that I have. I have tried EVERYTHING there is to try and ease it and or maybe tone it down but nothing seems to work. My BF said because I am getting older my metabolizm is slowing down, hense the big tummy, he says everyone goes through it with age. That's fine and all but having CF seems to make it worse. My tummy gets so bloated and gassy that I look 10 months pregnant and some nights laying in bed is soooooooo unbelievably uncomfortable. Does anyone else have this bloating/gas problem and have you had any luck in controlling it and if so what did you do.

I usually don't post a long topic like this but lately I'm just so frustrated with my CF and the CF doc's that at times I just wish that I didn't have it, I wish I could just snap my fingers or wiggle my nose and it would just GO AWAY!!!!!! I dunno if all this is making sence but I am having more bad days lately than good ones and I just wish the CF docotr's would just listen to me instead of Saying...."Well because you have CF...... Then they wanna go and change my enzymes....AGAIN I've gone through 3 different ones and I am now back to my old ones (Ultrase MT12), they work great but OMG the Bloating and the Gas!!!

Thankx

 

[65rosessamurai]

I agree, CF does Suck, but sometimes it's a matter of how you look at things.
I had gas and several forms of digestive tract problems as well, till I started paying attention to what I'd eat, and how it affected me later that day, or the next day.
I also had done an internet search for intestinal gas, or such and found out that proteins, as well as carbohydrates are what's causing the gas.
Potatoes, especially cause gas, but I love potatoes! I was surprised to find out that rice is the one carbohydrade that does not cause intestinal gas.
I'm no doctor, but from my own trial and error, I've found a way to cut down on such problems. I also stopped going to bed at night soon after I ate. I would try to adjust to stay up at least 45 minutes to an hour, letting the food start it's digestion before going to bed. (and no midnight snacks) I hope this comment helps in regards to the gas.
As for the doctors, it does depend on their age, and experience. I've put too much trust into doctors, myself. It wasn't until recently, I'd treat a doctor as a "person", and would ask several questions, sometimes even ask in contradiction to what they would say or recommend. For example, if a doctor is changing your medication, the suggested thing to do is ask for an explanation as to why. At least it may help in knowing why, and when it doesn't work, when you go back to see him, you can give an explanation as of why it didn't work.
I've already hit 40, and was diagnosed at 8 and a half years of age. The past ten years, I haven't even had my own "CF Doctor". But, until recently I also haven't had so many problems arise.
I just found this forum and decided to try it out today.
I hope this is at least helpful in the fact that you are not alone.

 

[Mockingbird]

Yeah, pretty much every clinic I've been too does that; only has CF day once or twice a month.

I agree the bloating/gas thinks stinks... though I think it's probably worse for females than males.. at least, you guys seem to always have it worse =-( Sorry about that.

Ha ha, no ones ever told me because I have CF I have to be more careful, but I can definetely see how that would get on my nerves.

Doctor: you have to be careful, 'cause you have CF!

Me: Remind me again what the hell I'm paying you for?

=-)

 

[ccflewallen]

ok, this might sound stupid and it may not even work. First, do you eat alot of fatty foods to maintain your weight? If so, try to tone them down and eat less extremely high content of fat foods or greasy foods. Doctors always tell me to eat "high calorie, high fat foods". I dont. I hate butter or food with butter in it, I dont eat hamburgers, mayo, salad dressing, cream cheese, or any other sauce or topping. I hate food with grease in it. When I was in school, I would use napkins to wipe any grease I could see on pizza. Generally, I dont eat much extremely fatty foods. I do have gas often, but never severe bloating; and my gas always comes out if you know what I mean. I do love potatoes (maybe part of my gas problem thanx for info) and eat them often (plain w/salt/pepper), and dont eat french fries much at all. Always eat grilled chicken at restaraunts. Never battered or fried chicken. I am 5'7" and weigh 148lbs. Good luck

Chris

 

[Mockingbird]

I don';t know if high-fat foods cause the bloating (They might, I have no idea =-) but I think it's right not to eat too much of them. At least, I've noticed my dieticians haven't been pushing a high fat diet anymore. =-) ha ha, but maybe they were just tired of smelling me! =-) (gas from high fat diet =-)

 

[65rosessamurai]

From my understanding, and this may be old, the two major reasons for NOT eating too many fats is that the Pancrease cannot absorb fats efficiently, and therefore it exits the body, hence the result is in a stomach ache. Item two, and it's the Enzymes I was using, they were distracted from pigs, who's Pancrease was similar in function to ours, and used as a supplement. My doctor (and mom) would always insist to not eat any pork products, because the enzymes would not digest it.
As for the gas, there are home pages which would help explain. I found an article from the Mayo Clinic home page, just by using a search on "Digestive Distorders-gastro".
It gives a fairly simple explanation and FAQ reply to how gas is originated, and how to reduce gas by an adjustment in diet.
With the exception of stomach aches related to gas, I've found excreting gas to be more efficient than a bowel movement. (Anyplace, anytime-easy cleanup-just be aware of the ventillation)
With having a bad experience in trusting someone else (doctors, dieticians, etc.) to give you the information, I've discovered it helps to educate yourself, as well.
Doctors are people, they make mistakes in judgement, too. My opinion is, some have too big of a pride to discuss with colleagues about a situation and therefore decide upon themselves.
As a patient, it would be to our advantage to know what the doctor is talking about, and ask questions.
By the way, if I listened to my doctor about not playing Ice Hockey when I was 9, I'd probably never have been able to accomplish (Living in Japan) the things I wanted to do. My mom was the one who influenced me in regards to not listen to a doctor say "You can't do.." My mom taught me not to overdo it, but to enjoy it.
Though in some cases I've had to work harder just to equal those without the disability who could do it easy.

 

[Mockingbird]

Enzymes can't digest pork products.... I've never in my life heard that! I used to be on pancrease, too, but my doctors never told me that. ha ha, it just got me curious if that's true or not.

 

[anonymous]

Hello Everyone

I am dumbfounded to learn that some of your clinics only see patients once a month!!!!!! Our clinic sees patients every Tues and Thurs and if we have an emergency than they will see us on other days..

Sorry to change this topic!!!

Kaitsmom<img src="i/expressions/rose.gif" border="0">

 

[65rosessamurai]

Mockingbird,
Just be sure to note that I quoted the Enzyme Supplements that were being used. I was using Cotazym-S at the time, and that was the warning. I haven't been on enzymes for 12 years, so I don't know what's changed since then. (TWELVE YEARS!?)

 

[anonymous]

Hi there, three points to note here. Firstly, I used to be on Pancrease for about 12 yrs and i often had bloating, gas and the runs, especially after a high fat meal, regardless of how many enzyme capsules i took with my meals. However since i've been on Creon, i have virtually no problems with malabsorption of fats/proteins at all and another bonus is that with Creon Forte i take less than a third of the number of Pancrease capsules i had to take. So if possible where you are, I highly recommend you give Creon Forte a go, it literally changed my life - no more embarrassing toilet problems or frequent visits to the toilet.
Secondly, I try to reverse what half of hollywood is up to these days and eat carbs as much as possible rather than foods high in fat, i find my body absorbs them better and i've put on 15 pounds in the last 3 months, by simply eating three normal sized, but high carb meals and one high calorie shake drink per day. Unforunately for the first time in my life I have a few darned stretchmarks too!! But hey, it's worth it to have a butt and some thighs for the first time in my life
Finally, the bloat problem may have another cause. I noticed when I came off my first ever treatment of IV antibiotics, every night i would be bloated to the extreme, with a stomach like a basketball and would feel extremely uncomfortable...so I did a bit of reading and found out something I never knew before. One of the symptoms of thrush is bloating!! Obviously after coming off a strong cocktail of antibiotics, i did have thrush and probably quite a severe case, so I took a Difflucan pill and voila, no thrush and no more bloating! Sometimes thrush doesn't show obvious symptoms, such as discharge or itching like it's supposed to, but if you've got it, your body struggles to fight it and it adds extra strain on your body and lowers your immune system too, so worth investigating maybe. Good Luck.

 

[anonymous]

Cutecurls,

This is a unique recommendation, however, when my digestive issues get too difficult, I get colonic hydrotherapy. I don't know where you live, but here in the Southwest, a place that provides colonic enemas, using sterile or distilled water, isn't too difficult to find. Once a year, I usually get three in about two weeks time, and that pretty much gets rid of the excess bacteria and mucus in my lower digestive tract. It also improves nutritional absorption.


Good luck.
Beowolf

 

[anonymous]

Once again I have to remind myself how lucky I am to live in Toronto. Throughout my sons life anytime we needed to see a Dr. at our clinic there was absolutely no problem whatsoever and even after clinic hours there was always someone on call that was able to help us. We never had problems finding a hospital that would do his transplant even though he had cepacia and as for the cost, I have no idea how much it cost but I know we didn't have to pay a cent toward it, the wait for his transplant was only 4 weeks. As for "because you have CF" I can't help but laugh when I think back to when he was about 10 years old, he fell and hurt his foot. After taking him to our local hospital, they x-rayed and couldn't find anything wrong but decided that because "he had CF" they needed to bandage his leg up from his toes up to his knee and have him on crutches. Needless to say this did not go down to well with Matt and as soon as he got home he took all the bandages off.

 

[anonymous]

OMG...I was just getting on here to B&M about the same thing!! <img src="i/expressions/face-icon-small-disgusted.gif" border="0"> I am just so disgusted with all of the gas, bloating and pain that goes along with it. I tried to put on a pair of jeans today that I KNOW fit fine a week ago and I could barely get them buttoned (and ultimately took them off because I could hardly breathe)!! I often wonder too if it just gets worse the older you get (I'm 35 btw) because for me, it has gotten worse the past couple years. It truly does suck and it is depressing to think that it could get even worse than this! Oh, and my bloating and gas does not really coincide with anything I eat...greasy, not greasy, it doesn't matter, although I do try to avoid beans if at all possible! <img src="i/expressions/face-icon-small-wink.gif" border="0"> *SIGH*

Jen