Hi there Mary,
I just read your posting and thought I would reply with any helpful support and information I could. I do not have CF, though my bf does and most of his issues are GI ones. I am not an expert by any means, but I do a ton of independent research on CF and I've talked to my bf's doctors when I go with him to his various appointments. I joined this site for support on his condition and to offer support on others. It seems a terrible thing to live with ...
Firstly, congratulations on your successful lung transplant! That is soo great and I'm glad that is going well!
Next, I would say definitely see a GI specialist about the problem. Yes, they will make you drink disgusting drinks and shove tubes up your butt, however, it's going to make you feel better in the long run, and it's for your health. You seem like a trooper to have gone through a double lung transplant and come out so well! I think you can do it!
As far as enzymes and such, I don't know a ton about them because my bf doesn't have to take them anymore, his lung and pancreatic functions have improved and he's been able to maintain with diet and exercise. Though, he does use Benefiber (2 tsps - 2 to 3 times daily in water or non-citrusy juice) to regulate his bowel movements, it makes him less constipated, and lets him go not as often, so as to absorb nutrients and fat. I think that also may help with the bloating. If bigger meals are making it worse then smaller meals are probably better, though try and eat more small meals throughout the day (5 or 6) so you're getting enough food and nutrients.
Going to get an opinion form your CF doctor also seems like another good idea since the GI stuff is encompassing in CF. 11 years is a long time, considering they should be monitoring your health at least annually with a chronic condition.
From what I know, bloating comes from issues with malnutrition, so with multiple meals, I know I try to make my bf eat a variety of vegetables and meats and some fruit during the day, he doesn't have any bloating and he is able to better maintain his GI issues.
He has had tons of tests done on him since he was 10 with his first colonoscopy and has some small polyps and an ulcer in his GI. He has to do all this stuff routinely. It's scary, and hard, and really uncomfortable for a little bit, but after he was able to get the help and knowledge to treat his condition.
You should go see a specialist Mary. I hate to see people in distress everyday and unable to function because of this.
Also, as a side note, be careful with the Prevacid. Being on it for too long can cause bone degeneration. Trying to control the acid reflux with diet would definitely be healthier if you can identify what foods trigger the acid reflux and can avoid them, and also trying a natural remedy in conjunction with the dietary changes can be very helpful like ginger root or chamomile. I know some general things to avoid are citrus fruits, tomatoes, onions, caffeinated beverages, garlic, chili powder, chocolate, fried and fatty foods. Most other vegetables (other than the tomatoes and onions, i.e. greens) are very good to eat for this.
I understand with CF weight gain is a huge issue and things in good fats, not saturated or trans, are way better for you to try and eat when trying to balance an acid reflux issue as well. Using things like ginger root and chamomile, or other herbal teas may help neutralize the stomach acid (the pH level) because they are more alkaline.
I hope I gave some helpful information and encouragement. Keep trying things and I hope you get some improvement at the very least. A lot time, I find, with CF, is spent figuring out what works best for each person, because not everything works for everyone.
Hang in there! Best of luck!
NY
Mary, 21
Boyfriend has CF
I just read your posting and thought I would reply with any helpful support and information I could. I do not have CF, though my bf does and most of his issues are GI ones. I am not an expert by any means, but I do a ton of independent research on CF and I've talked to my bf's doctors when I go with him to his various appointments. I joined this site for support on his condition and to offer support on others. It seems a terrible thing to live with ...
Firstly, congratulations on your successful lung transplant! That is soo great and I'm glad that is going well!
Next, I would say definitely see a GI specialist about the problem. Yes, they will make you drink disgusting drinks and shove tubes up your butt, however, it's going to make you feel better in the long run, and it's for your health. You seem like a trooper to have gone through a double lung transplant and come out so well! I think you can do it!
As far as enzymes and such, I don't know a ton about them because my bf doesn't have to take them anymore, his lung and pancreatic functions have improved and he's been able to maintain with diet and exercise. Though, he does use Benefiber (2 tsps - 2 to 3 times daily in water or non-citrusy juice) to regulate his bowel movements, it makes him less constipated, and lets him go not as often, so as to absorb nutrients and fat. I think that also may help with the bloating. If bigger meals are making it worse then smaller meals are probably better, though try and eat more small meals throughout the day (5 or 6) so you're getting enough food and nutrients.
Going to get an opinion form your CF doctor also seems like another good idea since the GI stuff is encompassing in CF. 11 years is a long time, considering they should be monitoring your health at least annually with a chronic condition.
From what I know, bloating comes from issues with malnutrition, so with multiple meals, I know I try to make my bf eat a variety of vegetables and meats and some fruit during the day, he doesn't have any bloating and he is able to better maintain his GI issues.
He has had tons of tests done on him since he was 10 with his first colonoscopy and has some small polyps and an ulcer in his GI. He has to do all this stuff routinely. It's scary, and hard, and really uncomfortable for a little bit, but after he was able to get the help and knowledge to treat his condition.
You should go see a specialist Mary. I hate to see people in distress everyday and unable to function because of this.
Also, as a side note, be careful with the Prevacid. Being on it for too long can cause bone degeneration. Trying to control the acid reflux with diet would definitely be healthier if you can identify what foods trigger the acid reflux and can avoid them, and also trying a natural remedy in conjunction with the dietary changes can be very helpful like ginger root or chamomile. I know some general things to avoid are citrus fruits, tomatoes, onions, caffeinated beverages, garlic, chili powder, chocolate, fried and fatty foods. Most other vegetables (other than the tomatoes and onions, i.e. greens) are very good to eat for this.
I understand with CF weight gain is a huge issue and things in good fats, not saturated or trans, are way better for you to try and eat when trying to balance an acid reflux issue as well. Using things like ginger root and chamomile, or other herbal teas may help neutralize the stomach acid (the pH level) because they are more alkaline.
I hope I gave some helpful information and encouragement. Keep trying things and I hope you get some improvement at the very least. A lot time, I find, with CF, is spent figuring out what works best for each person, because not everything works for everyone.
Hang in there! Best of luck!
NY
Mary, 21
Boyfriend has CF