Adults please

L

lexymarie04

New member
Thanks so much Caroline you are so right I know I can't depend only on the test my luck would be for it to come back and say thats not the answer and start back at square one. Lately have been trying to eat gluten free as much as I can , Im not much of a grains eater. I have been dealing with the stomach problems now for atleast 3 years but lately has been worse. I am a healthy eater not much of a grains, or sugar eater. Usually just meat chicken, pork, beef not hamburger. Veggies and fruits and puddings. I usually eat gluten free cereal like chex. Can't maintain my weight due to low calorie count ,no appetite along with greasy loose stools. I also eat alot of fish , salmon atleast twice aweek. But for the last 6 months all veggies have been upsetting my stomach and causing tons of pain and that i can't figure out. My CF doctor doesn't seem to understand it either making another appointment to see my GI Doc since CF doc believes it has nothing to do with my CF. I take Zenpep 5 with meals and snacks and I never forget to take them. I think thats the medicine I never go without. I can't increase the pancreatic pills due to the fact of my weight. But I am headed to check out the link you provided , thanks so much for helping me Caroline.
 
L

lexymarie04

New member
Thanks so much Caroline you are so right I know I can't depend only on the test my luck would be for it to come back and say thats not the answer and start back at square one. Lately have been trying to eat gluten free as much as I can , Im not much of a grains eater. I have been dealing with the stomach problems now for atleast 3 years but lately has been worse. I am a healthy eater not much of a grains, or sugar eater. Usually just meat chicken, pork, beef not hamburger. Veggies and fruits and puddings. I usually eat gluten free cereal like chex. Can't maintain my weight due to low calorie count ,no appetite along with greasy loose stools. I also eat alot of fish , salmon atleast twice aweek. But for the last 6 months all veggies have been upsetting my stomach and causing tons of pain and that i can't figure out. My CF doctor doesn't seem to understand it either making another appointment to see my GI Doc since CF doc believes it has nothing to do with my CF. I take Zenpep 5 with meals and snacks and I never forget to take them. I think thats the medicine I never go without. I can't increase the pancreatic pills due to the fact of my weight. But I am headed to check out the link you provided , thanks so much for helping me Caroline.
 
W

windex125

Guest
Hi Lexi I was diagnosed with a stomach problem called gastroparisis it's when the food does not move to the small intestine and onward to be digested. I also had severe stomach aches with whatever I ate. Went to a GS doctor who also understood my CF and he put me on a medication called Reglan which I take before each meal. I eat everything but latelty less meats it helps and also helps with my BM's which are either too much or too little I am PS so I do not have to use enzymes. But I also have the depression, and have had that for years on and off. I am 57 I have a 21 yr.old son took 11yrs to get preg. when I gave up on it happening the stick turned pink. OMG what a job being a Mom. I understand yr. fustration, with doing yr. treatments and knowing you have yr. husband as back up for yr. son if anything gets worse. I agree with everyone's advice. I also want to add that you have to want to be in good health for yourself first. Then everything else will fall into place. I take alot of meds as well also have MAC and occassionally bleeding which just seems to happen for no reason at times. I've also have depression and have done the therapy thing a few different times only to walk away thinking, do they really understand what am I feeling? The worst were the few that either talked too much, or the ones that hardly gave me any direction? This site has helped me alot even at this old age there is always something new to learn. But most of all we all are dealing with the same disease, different in each of us, but alot of same issues. I wish you good luck, take one day at a time I live by that saying. Don't worry so much about what if's? You will deal with life as it comes to you. I think you are just experiencing a bad time right now, but this too will pass. Just by what you posted abt yr. life so far you are a strong person. Our lives are like see/saws Pat-57/CF
 
W

windex125

Guest
Hi Lexi I was diagnosed with a stomach problem called gastroparisis it's when the food does not move to the small intestine and onward to be digested. I also had severe stomach aches with whatever I ate. Went to a GS doctor who also understood my CF and he put me on a medication called Reglan which I take before each meal. I eat everything but latelty less meats it helps and also helps with my BM's which are either too much or too little I am PS so I do not have to use enzymes. But I also have the depression, and have had that for years on and off. I am 57 I have a 21 yr.old son took 11yrs to get preg. when I gave up on it happening the stick turned pink. OMG what a job being a Mom. I understand yr. fustration, with doing yr. treatments and knowing you have yr. husband as back up for yr. son if anything gets worse. I agree with everyone's advice. I also want to add that you have to want to be in good health for yourself first. Then everything else will fall into place. I take alot of meds as well also have MAC and occassionally bleeding which just seems to happen for no reason at times. I've also have depression and have done the therapy thing a few different times only to walk away thinking, do they really understand what am I feeling? The worst were the few that either talked too much, or the ones that hardly gave me any direction? This site has helped me alot even at this old age there is always something new to learn. But most of all we all are dealing with the same disease, different in each of us, but alot of same issues. I wish you good luck, take one day at a time I live by that saying. Don't worry so much about what if's? You will deal with life as it comes to you. I think you are just experiencing a bad time right now, but this too will pass. Just by what you posted abt yr. life so far you are a strong person. Our lives are like see/saws Pat-57/CF
 
J

jamoncita

New member
haha.. printer's comment is right on point! hear, hear!!
i definitely have times when i don't want to do treatments, but i end up feeling crappier without 'em, so that's a big motivator. i'm seeing a therapist to deal with the emotional turbulence in my life and it has helped a great deal, as has writing in a journal. in fact, the writing came first in helping to deal with my diagnosis and suicidal tendencies, because frankly most people didn't even know what i was going through at that time in my life, and they couldn't fully understand anyway.
i think it's incredibly important for all people to find a healthy outlet for their emotions in order to deal with them. i would suggest you try out a few things, be it writing in a journal or meeting with a therapist, or singing or painting or exercising. there are a wide variety of ways to learn to deal with stress and anxiety, you just need to find which way works best for you. good luck!
 
J

jamoncita

New member
haha.. printer's comment is right on point! hear, hear!!
i definitely have times when i don't want to do treatments, but i end up feeling crappier without 'em, so that's a big motivator. i'm seeing a therapist to deal with the emotional turbulence in my life and it has helped a great deal, as has writing in a journal. in fact, the writing came first in helping to deal with my diagnosis and suicidal tendencies, because frankly most people didn't even know what i was going through at that time in my life, and they couldn't fully understand anyway.
i think it's incredibly important for all people to find a healthy outlet for their emotions in order to deal with them. i would suggest you try out a few things, be it writing in a journal or meeting with a therapist, or singing or painting or exercising. there are a wide variety of ways to learn to deal with stress and anxiety, you just need to find which way works best for you. good luck!
 
L

lexymarie04

New member
Thanks again so much everyone. I made an appointment to see my doctor today to get some medication to help with this depression even though I hate taking these type of meds. I truly appreciate the fed back. Just getting to talk with people who are dealing with this disease help so much. Jamoncita yes I need a hobby and I think im going to start writing I have alot to channel into a notebook esp. about my life experiences. And yes your right if you dont do the treatments you feel worse but sometimes it just feels like im too tired or lazy to get and get everything to do or just say to myself o'll do it tomorrow and forget. I guess I procrastinate @ Windex I will have to keep gastroparisis in mind when i go to the doctor. My CF doc was giving me mirlax to help with bm's. Since being a mom it's been such a great joy but sometimes its harder when you have your own setback like dealing with CF and raising a child. Sometimes i take less care of myself even though I know the outcome of not doing the meds. The worse part is I try so hard to be this strong person all the time and noone actually see's the depressed sad side of me. From all the angry and grief I feel I kinda put up this shield for people I don't want them to feel sorry for me but then again I wish they knew how I felt. And your right again everytime I go to the therapists they either don't say anything at all or just ask a thousand questions and act like i should be over it by now, can't seem to find that one good person who sits and talks and actually gives good advice.
 
L

lexymarie04

New member
Thanks again so much everyone. I made an appointment to see my doctor today to get some medication to help with this depression even though I hate taking these type of meds. I truly appreciate the fed back. Just getting to talk with people who are dealing with this disease help so much. Jamoncita yes I need a hobby and I think im going to start writing I have alot to channel into a notebook esp. about my life experiences. And yes your right if you dont do the treatments you feel worse but sometimes it just feels like im too tired or lazy to get and get everything to do or just say to myself o'll do it tomorrow and forget. I guess I procrastinate @ Windex I will have to keep gastroparisis in mind when i go to the doctor. My CF doc was giving me mirlax to help with bm's. Since being a mom it's been such a great joy but sometimes its harder when you have your own setback like dealing with CF and raising a child. Sometimes i take less care of myself even though I know the outcome of not doing the meds. The worse part is I try so hard to be this strong person all the time and noone actually see's the depressed sad side of me. From all the angry and grief I feel I kinda put up this shield for people I don't want them to feel sorry for me but then again I wish they knew how I felt. And your right again everytime I go to the therapists they either don't say anything at all or just ask a thousand questions and act like i should be over it by now, can't seem to find that one good person who sits and talks and actually gives good advice.
 
H

Havoc

New member
Personally, I dislike psychotropic meds, you would be better off to find a cognitive therapist than drugging yourself into a numb state.
 
H

Havoc

New member
Personally, I dislike psychotropic meds, you would be better off to find a cognitive therapist than drugging yourself into a numb state.
 
S

sunshine39656

Member
I'm going through the same thing with the not wanting to do my treatments. But it's a decision I HAVE to make; no one can do it for me. So...I'm taking charge and doing it!!! I like to think it will be worth it all <img title="Laughing" src="include/wysiwyg/tinymce/jscripts/tiny_mce/plugins/emotions/img/smiley-laughing.gif" alt="Laughing" border="0" />
 
S

sunshine39656

Member
I'm going through the same thing with the not wanting to do my treatments. But it's a decision I HAVE to make; no one can do it for me. So...I'm taking charge and doing it!!! I like to think it will be worth it all <img title="Laughing" src="include/wysiwyg/tinymce/jscripts/tiny_mce/plugins/emotions/img/smiley-laughing.gif" alt="Laughing" border="0" />
 
G

Gorf

Guest
I was diagnosed at 3 years old. I had my ups and downs with not wanting to do treatments then(Mom kept me honest, I am alive today because of her.) In high school I was teased for taking my enzymes one year, stopped taking them. Luckly that didn't go on long. Not sure about your pain, but I got a bleeding ulcer at 21(easy to diagnose if you know what to look for, dark or black stool), that could possibly be your pain unless I missed something. I have a 24 year old son now, he is what kept me going while I was gettting older. <img src="i/expressions/face-icon-small-wink.gif" border="0"> One day at a time is the best way to do it. Excersise helps if you can, I ended up getting a Trampoline when my son was young and me and him spent hours on it. 10 min. on that is like running a mile, and you find muscles you didn't know you had.
 
G

Gorf

Guest
I was diagnosed at 3 years old. I had my ups and downs with not wanting to do treatments then(Mom kept me honest, I am alive today because of her.) In high school I was teased for taking my enzymes one year, stopped taking them. Luckly that didn't go on long. Not sure about your pain, but I got a bleeding ulcer at 21(easy to diagnose if you know what to look for, dark or black stool), that could possibly be your pain unless I missed something. I have a 24 year old son now, he is what kept me going while I was gettting older. <img src="i/expressions/face-icon-small-wink.gif" border="0"> One day at a time is the best way to do it. Excersise helps if you can, I ended up getting a Trampoline when my son was young and me and him spent hours on it. 10 min. on that is like running a mile, and you find muscles you didn't know you had.
 
H

Hardak

New member
Hang in there and take a day at a time, You've got alot on your shoulders and if your not in counseling at the least I would consider it. As far as your GI tract goes have you tried playing with your diet and your enzymes, you may be not getting enough or dropping too many. and do keep in mind, your on alot of antibiotics going pro-biotic would be a good idea while your dealing with that mac infection. Don't let it seem like your under so much that you can't get out from under some of it, or do ok with what you have to deal with. As far as psychiatric meds goes I think they can be a good stop gap but they aren't a long term answer, and in my personal experience they don't really do much of any good ether.
 
H

Hardak

New member
Hang in there and take a day at a time, You've got alot on your shoulders and if your not in counseling at the least I would consider it. As far as your GI tract goes have you tried playing with your diet and your enzymes, you may be not getting enough or dropping too many. and do keep in mind, your on alot of antibiotics going pro-biotic would be a good idea while your dealing with that mac infection. Don't let it seem like your under so much that you can't get out from under some of it, or do ok with what you have to deal with. As far as psychiatric meds goes I think they can be a good stop gap but they aren't a long term answer, and in my personal experience they don't really do much of any good ether.
 
You must log in or register to reply here.
Top