confused can someone help?

[countryboy47]

hello, i know i am using my dads account and i am sorry. but i have a few questions. my name is patricia and im 22 yrs old and possibly have cf. i know i have a heart mumor, low blood pressure, bowel movement problems,chronic vomitting,and frequent lung infections. well my pcp sent me to a gi and once the gi found out what ran in my family for my sister had cf and it killed her at 9 yrs old and my aunt had cf and it killed her at 26. well the gi thought i had a lot of sythoms that cf does he tested me for it did blood work, my stools came back fatty, i indeed have delta f508 and chronic gastriitis, and pancreas insuffiency. well i am on a load of meds right now. i was taking 3 pancreas enyzemes with each meal 3 times a day. well everything i ate but applesauce comes up so i went to a strictly applesauce diet. i sprinkle the pills in the food(applesauce) and take em that way. well they werent working infact the vomitting gets worse everyday. well now im up to 6 per meal 3 times a day along with all the other meds still except the gastritis infection antibotics i am done with those now. ne ways to get to the point. i should have an absolute anwser by the cf fondation whether or not i have cf or not sometime in feb(icant wait i just want to know ya no). Well the vomitting is getting so severe it feels like im dying. i dont know if ne one else has this problem, but i am scared. i want to beat the odds. ya no no one with cf has lived to 30 yet in my family. and i just found out today that i have phemonia now. ughhh!! i dont know how my sister did it. i just want the stomach pains,the chest pains,the vomitting to stop to leave me alone. what did i do that was so wrong to go thru all of this pain. i dont know how much more i can take without screaming. can ne one help? how can i stop vomitting? what can i take to stop all the pain? All the docs think i am postive for cf. but the gi said my case is obviously worse than he thought. im so confused. is it poss to have a moderate to severe case when diagnoised so late?? i hope my dad dont read this. he is stressing out enough without me adding to his stress levels.
please ne advice would greatly be appreciated.
Thanks for reading my story,
Patricia

 

[Alyssa]

Patricia,

I'm sorry you are going through all this pain. I can't help you much with that, but I can say that you have every reason to believe that you can/will live longer than 30 years old with CF -- many many people do, and yes even with the later diagnosis. The good news is if you are starting now to be treated by CF docs you will most likely start to get better care and hopefully start feeling better.

Hang in there, I know it is scary but don't give up -- eat what you can to keep your strength up -- and stay in touch with the GI doc -- Is that doctor part of the CF team? Is he/she experience with treating people with CF? If you are not happy with what you are being told, change doctors as soon as possible.

 

[anonymous]

Hi Patricia,
I am so sorry you are having such a hard time. I hate that you are having all of these problems hit you all at once. I would not let this get you down though. I know it is definitely an adjustment and it sucks, but at least now you know why you are constantly getting sick if you do have CF and they(your drs) are not wondering how to treat you. Once you know you what the problem is you can take the right meds and you can "beat the odds". I have heard stories of many people living well into their 30s and past (there are alot of people on these boards in that category). I am 23 myself, no direct/close family history with CF. I had some distant cousins that lived and died around the late 1800s that they think may have possibly had Cystic Fibrosis without a definite diagnosis though, but nothing recent.

As for taking the enzymes, I took them mixed in apple sauce until I was in Elementary School - I forced myself to swallow the capsules after that because the school nurse refused to mix the meds in the capsules in anything, she just poured them in/on a spoon and gave them to me that way - they taste nasty without something to mask the taste so I just learned to swallow them. As for the vomitting, I mainly only have problems with that when I am sick and having constant coughing fits I tend to cough til the point of heaving when I am sick - thus causing me to throw up on occasions.

If you are having nausea and things with the vomitting there may be another problem. The enzymes are to help with the digestive portion I thought. I have not heard of them helping with nausea and vomitting. Just because I haven't heard of it doesn't mean it doesn't help, it is just a thought that there maybe something else going on if you can't keep any food down.

If you need to - take some good old ibuprofin for general pain, and if you are having like gas and bowel pain take some maalox or something along those lines and maybe that will help ease some of the discomfort. If you are having diarhea or anything with your stomach pains it may be due to medications if you are/were on any IV meds for any illness- I know you mentioned you found out you had Pnuemonia. I know when I am on IV meds they mess my stomach up badly I always have to take maalox when I am on them. Also I know when I was in the hospital once a year or so ago they had me on meds that raised my blood sugars - I have CF Related Diabetes as well - and I spent like 3 days hunched over a toilet throwing up until they changed my meds and I was able to get my blood sugar under control.

I do not want to freak you out with my comment about the blood sugars I just was thinking that since they are probably putting you on alot of meds right now one or more of them may be causing your blood sugar to rise and that could be causing some of your vomitting. Another thought too - drink alot of water. I know they always tell you to do that anyway, but here is my reason for saying that. You may or may not be used to taking a lot of meds. If you/your body are NOT used to all the meds you are on it could be giving you problems. Your body may just be taking a while to get adjusted. If you drink alot of water it will help clean your system a bit and maybe the meds won't be as potent to your body - which could be what is making you sick. That is just a thought.

I really hope that you start feeling better and that things work out for you.

If you want to talk to anyone feel free to email me.
You can rant and vent and anything else you want. I know sometimes it is nice to just get it all out.
My email address is xiao07@hotmail.com

Take Care and I hope you start feeling better soon.
Lindsey
23 w/CF and CFRD

 

[JazzysMom]

Even tho CF is genetic it doesnt mean the severity of it or the lifespan within your family applies also. Everyone is diifferent therefore there is no reason to think you will die "early". When I was dx at 7, my parents were told I would live to my teens. In my teens I was told I would make it to my twenties. In my twenties....you guessed it, I was told I wouldnt make it to my thirties. Well her I am just over 2 years away from 40 & still kicking. Maybe not kicking as high as I use to, but still kicking. Do your best to take care of yourself & there will be times that you run into obstacles even with the best care because that is the nature of the beast. I was really sick early 2005 & no matter what I did for months it didnt make a difference. Then all of a sudden things started improving just as quickly as the went downhill!

 

[anonymous]

Hi Patricia,

Everyone else said it, but I'm going to say it again:
THERE IS NO REASON TO SAY THAT YOU WILL DIE YOUNG BECAUSE SOME IN YOUR FAMILY HAVE!
Like Melissa, when I was diagnosed, they said I wouldn't live to be 7, when I was 7, they said 13, when I was 13, they said 18. Now I'm 23, and not dying! I have family that has died young too. Don't be scared! Fear is your enemy!!
I don't know what type of doctor you are seeing right now, and I'm not saying that he/she is not qualified, but the best place for you might be an official CF Center. They are all over the country. You seem to have some unusual symptoms, and your Digestive component seems complicated. CF centers simply have the latest research, newest drugs and treatments, and they are always on top of their game. Usually the best care is there. I would reccomend that. You can find a list of CF centers on most CF websites. I go to St. vincent's in New York. Until then, I would rest as much as possible. If you feel this unwell, school/work maybe should be put on hold? Running around doesn't help. You'll get through this.
Also, I'm sure your parent's are stressed and worried for you. But you need support too, so don't feel guilty about having to talk.
Christian

 

[JohnnaMarie]

Have you tried all of the anti-nausa pills out there. They make supositories too. Gotta keep the food down to get better. There is something out there that can help you , you just cant give up looking for that med or food that will get you through this and keep trying new things ......Have you tried the BRAT diet....probably so the Bananas, applesauce, toast, i know you said that apple sauce was something you could eat...don't know what the R is for though....Bananas are a good natural stomach soother........you could be on the wrong kind of enzymes too.....I am on Ultrase now.....Creons were making me really sick....... Starting new meds is always hard. It will be worse before it gets better. Just think about the getting better. You can live alot longer than the other people in your family that have CF. What does yogurt do for ya??? Soy milk is good vanilla flavor. Regular milk can cause you acid to go up in your stomach. Soy doesn't do that. Actually tastes okay too. Vanilla, Chocolate, some have other flavors too...try any Boost or other shakes?? I wish you the best. Hang in there. Get over this hump so you can start to enjoy some living!!! Much love and Best Wishes<img src="i/expressions/heart.gif" border="0">

 

[smoothdave]

there isnt really much else for me to say... u have had all gr8 information from every one in this site, i am not gonna bored u by sayin it all again,
just before i got d/c at 18 1/2 year i was being sick every single morning for at least 8 months, every morning it was the same routine straight to the toilet to be sick, as soon as they put me on the med i saw a change straight away. so things will only get better.i felt better and i felt i could do more physically as welll. i am now 19 (twenty in april) i have been in hospital a couple of times but only for a max of 5 days.
the furture will be bright for u my friend. dont give up hope. need to speak we are all hear.
take care

smooothh... dave

 

[JazzysMom]

Rice is for Rice in the BRAT diet.....

 

[anonymous]

Hi Patricia

sorry, I can´t help you much with the vomiting, but there is something else in your post:
as far as i understood you take the enzyms but don´t eat anything but applesauce right now!? If that is so: you normally need the enzyms only for meals that contain fat (and maybe also proteins), but that is not the case with applesauce..
For the vomiting: if you have gastritis, did they also test for "helicobacter pylori"? Thats a bacteria which can cause gastritis problems.
If you take oral antibiotics against the gastritis and vomit all the time, the tablets won´t have any effect, so maybe you should better go to a clinic and get IV-antibiotics until you feel better. They can als give you vitamins and carbs and fat with an IV until your vomiting stops, so that you don´t dehydrate and loose too much weight.

Good luck

Uli,43, Germany, cf/cfrd

 

[anonymous]

Hey-
Just concerned,
you do need enzymes for applesauce, almost all foods. not because of the fat, but because of the sugars. i stopped taking enzymes when i would eat fruit, and my doc told me to always take them because it's hard for us to break down sugars as well. sugar, as you probably know, turns to fat. at the very least, the extra enzymes can't hurt.

Christian

 

[JazzysMom]

I dont agree with the "it cant hurt" scenario. If I take enzymes that arent "needed" because what I ate doesnt have a high enough fat or sugar content (such as pretzels) then I feel it in my belly & if its bad enough I feel it in my bowel movements. Most foods need some kind, but not all! Unforunately that is an individual thing!

 

[anonymous]

This isn't much, but have you also tried mashed bananas just to see if you can keep it down?
Also, rice and possibly skim milk??? Just some suggestions.

 

[anonymous]

Trisha,
Hello, your dad and I have been e-mailing about CF. He loves you very much and he's concerned for you and about you and doesn't want YOU to be the one worrying. Ironic isn't it?!
I know this will be difficult but try to have a conversation about this with him. The two of you really seem to be on the same page. I have CF and I'm 28. I have shared with him some of the stuff I've been thru and I know he has a good understanding of it from your sister. It sounds like you're very lucky to have him. I know he is proud of you for fighting and for the sake of your children too.
I know this isn't the best e-mail you have probably read but if you'd like to e-mail me, please feel free to.
My e-mail is kellimylove@hotmail.com
And good luck, Trisha.
Sincerely,
Kelli

 

[anonymous]

Hey,
Melissa-
I've never heard that about the enzymes. Maybe I have 'old school' info. It was a while ago that I was told to take them with everything. Anyway, that 's what these forums are for, thanks for the correction.

I liked Kelli's post. I agree with that. Talk to your parents. They seem like they really love you.

Christian

 

[countryboy47]

hello again all,
ok first of all i want to apologize. i must have miswrote my first entry! i do want to live past 30. i know i can. forget about being the oldest in my family. i want to be the oldest in history. i was just explaining the history of cf in my family so i totally apologize for any misundering that i wrote. Second of all, i talk to my father all the time. i tell him how im feeling and all. Right now im on sooo many meds and like any normal person i get tired of taking my meds and my father explains to me that i need to them. i cant digest my food on my own and i hate my breathing treatments. sometimes i feel like is it all worth it then i take one look at my beautiful 2 yr old son(they said i cant have ne more but watch me) and i remember just how worth it, it is. the whole point of writing here in the begin with was to see if ne body else has problems eating, like does everything come up with ne body else and if so i was looking for some suggestions on how to control that. so once again i am so sorry for any misunderstanders. i hope everyone is having a great healthy week. i wish i was healthy and not fighting phenomia. oh and to anwser some other questions yes i go to a cf clinic. and a bunch other doctors. i have the cf clinic, another pulomanry doc, a GI doctor,and my lousy pcp.
Well thanks for replying tho have a great week!!
Tricia

 

[anonymous]

Keep trying Tricia.
I'm sure its so irritating to go to so many dr.'s and get the run-around all the time. It's so tiring.
Just keep doing it until you can find the dr that can help you with all of your needs. It's a pain but its so worth it when you get good and complete care! Make sure you advocate for yourself, sometimes I come across as a b*tch at the hospital but I'm in charge of my own health, the dr.'s work for me (in my opinion) I know my body best of all, and I'd appreciate it if they would listen to me. So make sure you get your point across. You are probably used to that by now though.
Keep fighting and enjoy everyday with your beautiful son!!!

~Kelli

 

[mousesmom]

Trish

It's tough getting used to the new routines, but you'll soon have it in hand. Are you being treated for a Staph infection? My daughter couldn't keep any food down when taking oral Erythromycin.

Monique takes her enzymes (10 x Creon) in the capsule, all at once, belive it or not!

You're right Melissa, we were also told that too many enzymes can actually give similar symptoms to mal-absorbtion. We were told that 10 (Creon 25000 that is) was the same amount of enzyme that naturally occurs in a "normal adult".

Hang in there Trish, I hope you'll soon feel 99%.