Hey guys! I’m working on a book about CF coming from anangle most know none about! But I need some help. I need some more ideas on thegross, maybe embarrassing moments or things that come along with this difficultdisease! Anything at all, please post a comment. This way you can stay anonymousand won’t have to tell extremely embarrassing things about yourself tostrangers. I of coarse will give credit for all those who contribute to mywork!!! Thanks all!!!
Gross, embarrassing things that come with CF!
- Thread starter megan420
- Start date
2. When Im in the hospital being pumped full of liquids and Im on my daily mirlax my s*** is legit water!!! Its nasty and guess what, stains my undies....plus I sometimes wake up in the middle of the night to me messing in my freaking pants. Like talk about ewwwwww! Then I gotta get up and clean off and change cloths! I cant even fart bc I dont know if crap is gonna come out or if its gonna just be air!
Boardwalk Angel
New member
3. having your feeding tube fall out, this has happen to me twice! >.<
4. having your feeding tube fall out into the toilet.
5. waking up to find your feeding tube connector came lose and now you, your clothes, and your bed covered in feeds
4. having your feeding tube fall out into the toilet.
5. waking up to find your feeding tube connector came lose and now you, your clothes, and your bed covered in feeds
Y
yanne
Guest
We're 5 months later now, but hey! Here's my embarassing story:
As a kid I had a lot of sinus problems, nasal polyps.. (Now a lot less since I use a Neti-pot). I was about 12 or 13 years old, and we were on a school trip, and the whole class was in the bus. Suddenly I sneezed.. Seconds later I noticed in the middle of the aisle of the bus an absolutely HUGE bright-green snot clot! It had a diameter of something like 3 cm!! I immediately realized it was mine...No one knew that, and no one even saw it! (as far as I remember). But I remember feeling very, very embarassed.
As a kid I had a lot of sinus problems, nasal polyps.. (Now a lot less since I use a Neti-pot). I was about 12 or 13 years old, and we were on a school trip, and the whole class was in the bus. Suddenly I sneezed.. Seconds later I noticed in the middle of the aisle of the bus an absolutely HUGE bright-green snot clot! It had a diameter of something like 3 cm!! I immediately realized it was mine...No one knew that, and no one even saw it! (as far as I remember). But I remember feeling very, very embarassed.
W
welshwitch
Guest
*Hawking a loogie only to realize it's on your work shirt (happens to me all the time!)
(happens to me all the time!)ermehgad, I know that feeling, except at school or somewhere!*Hawking a loogie only to realize it's on your work shirt
One time I was at school and I had a very productive cough, so I coughed into my shirt on the short sleeve, not noticing it there I continud on the computer, I was about to sneeze, when I looked on my shoulder and saw phlegm was there, stuck there! So then I looked around and saw no one saw it, so then with my hand I tried to get it off, I walked over to the tissue box and acted like I had to blow my nose and got rid of it. Then I went to the bathroom to wash up and get the rest off. That was embarrassing. And it happened a few times.
Another time was when I was in kindergarten and I was suffering from a prolapsed rectum (kinda cf related, cause my drs say a lot of CFers have this), so my teacher had to call the nurse cause I was stuck in the bathroom. She had to call the nurse cause she had some type of water box thing that I'd sit on to have it go back up there. So whe the nurse knocked on the door she opened it and a few people looked in and saw me. That, was embarrassing.
Hmmm. And I guess most of the other embarrassing stuff is when I don't take my enzymes and I'm in the bathroom for like, 30 mins (the worst is when theres no Febreze).When our family moved into our new house years ago, I spent so much time in there that my dad actually bought a plasma tv to put in the bathroom lol
then my record for being in the bathroom went from 30-45 mins all the way to 2 hours! Idk if I'm alone on this one, but I can honestly stay in the bathroom for a while, that's where I like to think haha!
azdesertrat
New member
When I was in first grade, our class took a field trip to the next town over on a passenger train. My egg-donor (biological mother) really couldn't find it in herself to get off her dead ass & give me the care I needed. Thus, I wasn't taking enzymes. I suffered from loose & very greasy stools. I 'greased' myself & the upholstery of the seat I was sitting in. Very embarrassing. I too, have accidently hawked green crap all over my shirt, it seems like you can't ever get it entirely off until it goes in the washing machine. When I was hospitalized in Boise, ID. last winter, I had to have a colonoscopy. When I was doing the bowel cleanse, I messed my bed & gown no less than 7 times. I had to get up, disrobe bare-ass naked in front of several ladies I had never seen before & sit on the bedside commode until they got my bed changed & got a new gown. Just a tad embarrassing. That's only 3 of the things that come to mind. Believe me, there are more. CF can be very embarrassing...
LittleLab4CF
Super Moderator
Here is one that so many deal with but never think about it. Sweat. Whether it is spontaneous whole body sweats during a flare or my personal loathing, really sweaty hands. My hand prints are etched into countless metal and natural materials like leather or varnish. As a teen, if I borrowed the car and forgot to clean the steering wheel, five a.m. the next day I would be out in the garage doing it.
The thousand clammy handshakes and countless soaked papers, tablets and books. I once had to intercede when a restaurant manager saw "my filthy water glass" and started to dress down our server. Awkward!!
For all the social detriment of wet slimy hands, I am amazed my feet are still with me. As a kid I had athletes foot so bad the skin between my toes was split past the the joint, exposing the bone when the doctor would spread two adjacent toes. This was so miserable and frustrating until a good antifungal medicine came along.
As an official etcher, a producer of highly acidic sweat, everything I wear, save gold, rots off my body. A quality leather watch band is good for a few months before it disintegrates. Stainless steel lasts a year but I get an electric buzz from my organic battery. Hats, sweat bands and belts are not color fast in my sweat so I have these new grungy garments and accessories. I would like a shoe manufacturer to honor their warranties because their shoes die on my feet. Often they smell rather dead in fact.
Embarrassing thing would have to be my brief period last year with pleural effusion. My wife and I met with friends for lunch and to discuss "Pam's" cancer diagnosis. Here we are supposed to be supportive and empathetic and every little cough or jiggle is hitting me like a cattle prod causing a momentary but splayed out spasm that was odd looking to say the least.
Possibly my childhood dentist shares in this gross event. I had rotten teeth, big time and three primary molars had to go. The numbing injection didn't take and the dentist was angry and getting really mad as the fragile teeth crumbled in his tools. At a point he was digging the roots out and struck a nerve like no other. I bit, he yanked his denuded finger out of my jagged broken teeth, leaving me with a chunk of dentist finger in my mouth. Finger tip with fingernail anybody? That was gross and totally CF.
Have fun,
LL
The thousand clammy handshakes and countless soaked papers, tablets and books. I once had to intercede when a restaurant manager saw "my filthy water glass" and started to dress down our server. Awkward!!
For all the social detriment of wet slimy hands, I am amazed my feet are still with me. As a kid I had athletes foot so bad the skin between my toes was split past the the joint, exposing the bone when the doctor would spread two adjacent toes. This was so miserable and frustrating until a good antifungal medicine came along.
As an official etcher, a producer of highly acidic sweat, everything I wear, save gold, rots off my body. A quality leather watch band is good for a few months before it disintegrates. Stainless steel lasts a year but I get an electric buzz from my organic battery. Hats, sweat bands and belts are not color fast in my sweat so I have these new grungy garments and accessories. I would like a shoe manufacturer to honor their warranties because their shoes die on my feet. Often they smell rather dead in fact.
Embarrassing thing would have to be my brief period last year with pleural effusion. My wife and I met with friends for lunch and to discuss "Pam's" cancer diagnosis. Here we are supposed to be supportive and empathetic and every little cough or jiggle is hitting me like a cattle prod causing a momentary but splayed out spasm that was odd looking to say the least.
Possibly my childhood dentist shares in this gross event. I had rotten teeth, big time and three primary molars had to go. The numbing injection didn't take and the dentist was angry and getting really mad as the fragile teeth crumbled in his tools. At a point he was digging the roots out and struck a nerve like no other. I bit, he yanked his denuded finger out of my jagged broken teeth, leaving me with a chunk of dentist finger in my mouth. Finger tip with fingernail anybody? That was gross and totally CF.
Have fun,
LL
pdamaged teeth? CF causes bad teeth? Cause I have bad teeth, like, I have bone missing, naturally. It's not cause I don't take care of my teeth, my dentist says I was handed a bad pair of cards.
I guess sweat can be embarrassing, like if I'm sleeping in class on a book my hand literally sticks to the paper and it rips the paper sometimes.
LittleLab4CF
Super Moderator
I didn't know how universal CF and rotten teeth were until somebody was describing a CF stereotype at this site and included lousy teeth along with skinny arms, hunched back etc. So yeah, me too, I got this bad hand of cards thing almost to the word when I was a kid. My dental work was wholesale. Once I found a more sympathetic dentist, he would drill and fill four or five teeth at a time. I still have my teeth excepting two molars so don’t panic.
If you haven’t had your teeth sealed and can afford it, I can’t recommend this highly enough. My insurance didn’t cover my niece’s teeth sealing hence my caution about affordability. I can’t remember how much it was sans insurance but $30/pearl seems about in the range.
CF and bad teeth may have several contributing factors. As with other mucus membranes and duct/gland combinations as in the salivary glands, this is where the bad hand of cards may lay. Lower than normal amylase levels are typical in CF patients most times. All the dental hygene, brushing and flossing won’t replace this most effective cavity fighting agent.
Amylase is an enzyme like many snake and spider species use as a killing venom. If you take a soda cracker and chew it long enough, the starch and simple carbohydrates will break down to sugar and begin to taste sweet. It destroys cavity causing microbes on contact but it is a constant battle.
Another factor is malabsorption which for you is probably not being neglected. I wasn’t diagnosed until age 52 so I had no idea my bones were turning to sponge along with my teeth. My dentist had an interesting story about a man with great teeth suddenly going bad. Each cavity filled was met with suspicion like a secret candy habit. His quizing got more in depth to the discovery of lifetime mystery. This wasn’t his first patient like this but it was his worst. This patient liked sweet tea. Rather than having a cup in the morning with breakfast, he was sipping away all day. Flash! In the process of sipping all day on sugar water he was bathing his mouth every twenty minutes or so in effect providing the perfect environment for cavity microbes. Sugar habit along with good dental hygene won't pay the rent
We just don’t have the juice guy,
LL
If you haven’t had your teeth sealed and can afford it, I can’t recommend this highly enough. My insurance didn’t cover my niece’s teeth sealing hence my caution about affordability. I can’t remember how much it was sans insurance but $30/pearl seems about in the range.
CF and bad teeth may have several contributing factors. As with other mucus membranes and duct/gland combinations as in the salivary glands, this is where the bad hand of cards may lay. Lower than normal amylase levels are typical in CF patients most times. All the dental hygene, brushing and flossing won’t replace this most effective cavity fighting agent.
Amylase is an enzyme like many snake and spider species use as a killing venom. If you take a soda cracker and chew it long enough, the starch and simple carbohydrates will break down to sugar and begin to taste sweet. It destroys cavity causing microbes on contact but it is a constant battle.
Another factor is malabsorption which for you is probably not being neglected. I wasn’t diagnosed until age 52 so I had no idea my bones were turning to sponge along with my teeth. My dentist had an interesting story about a man with great teeth suddenly going bad. Each cavity filled was met with suspicion like a secret candy habit. His quizing got more in depth to the discovery of lifetime mystery. This wasn’t his first patient like this but it was his worst. This patient liked sweet tea. Rather than having a cup in the morning with breakfast, he was sipping away all day. Flash! In the process of sipping all day on sugar water he was bathing his mouth every twenty minutes or so in effect providing the perfect environment for cavity microbes. Sugar habit along with good dental hygene won't pay the rent
We just don’t have the juice guy,
LL
I second the bad teeth. Part of my problem was the lack of enzyme, and the other was staining from the vitamin I was on. I take care of my teeth religiously now in order to try and prevent as many cavities as possible and after trying several different options, I got veneers on the top front four teeth in order to cover the staining.
LittleLab4CF
Super Moderator
If you are timid about asking your doctor about testosterone likely your badly in need of some. Your doctor is just that. She/he isn't your mom or a police officer, a doctor aids you with your health management. There are probably questions out of bounds with a doctor, but not many and testosterone levels are right in with other informed questions to discuss.
Testosterone levels can drop very quickly, even in a teen aged adolescent/young adult, with CF or a similar disease. Ask your doctor to run a serum testosterone test, a blood test like the usual panels they have been doing all your life. Stress hormones like testosterone and cortisol become elevated by illness, pain, injuries and when we anticipate or have to fight or decide to run. CF hits hard on the body and mind and these glands producing stress hormones full bore, full time begin to burn out.
In males with CF, testosterone levels could be within range but barely within range. When your testosterone test results come back you will be put on testosterone if you are low. Be sure to discuss your complaint with your doctor using the same kinds of descriptives like a low libido or sex drive. Ask exactly where your T level is in either case, low or within range. If you are at the low end of normal, your complaints add up to a legitimate issue or argument for augmented T in a prescription like AndroGel.
My T should have been looked at in my late 20s by my estimate looking back. My complaints weren't being formulated to point my doctor at my testosterone. They can offer help only if they understand the problem.
Several people that contribute on this site are body builders. There are a number of body building supliments that will fill part of the bill for filling out. Protein powders and brewers yeast shakes used to spoil the air when my brother was dedicated to having a muscular body. Weights clanking and pulleys heard straining against the basement ceiling followed for a couple hours every day. Starting in 10th grade he wrestled at 123lb weight class by the end of the year he was moved up to 135lb class. Eleventh grade ended at 145lb then his senior year he entered at 154lb and finalled at 165. If only... It was so discouraging except to him. He had purchased a muscle building course that forewarned him it could take months just to ignite his muscle building metabolism. That sounded like bull to me but it was like magic. Four months of no weight gain was rewarded with about a pound a month on average for the year. You are going to develop strength and energy.
This is not something I feel comfortable suggesting because of some extreme results I have seen. Creatine, is a supliment sold in health food stores and such is a testosterone precursor. Taking it will maximize the amount of testosterone in your body. The danger I have worries over are men and women body builders who get hooked on the results it produces and maybe a little dependence physically. Do your homework and research this supliment for safety. If you feel it is alright, discuss taking it with your doctor. Please don't blow off the steps involving your doctor, you need to understand that they aren't there to judge you, they are your resource, utilize them to your benefit. When or if you are, say looking at taking recreational drugs, ask your doctor any questions you want about taking them. Chances are best that your doctor will be frank and non judgmental. Chances are high your doctor will be impressed by your maturity.
Go T!,
LL
Testosterone levels can drop very quickly, even in a teen aged adolescent/young adult, with CF or a similar disease. Ask your doctor to run a serum testosterone test, a blood test like the usual panels they have been doing all your life. Stress hormones like testosterone and cortisol become elevated by illness, pain, injuries and when we anticipate or have to fight or decide to run. CF hits hard on the body and mind and these glands producing stress hormones full bore, full time begin to burn out.
In males with CF, testosterone levels could be within range but barely within range. When your testosterone test results come back you will be put on testosterone if you are low. Be sure to discuss your complaint with your doctor using the same kinds of descriptives like a low libido or sex drive. Ask exactly where your T level is in either case, low or within range. If you are at the low end of normal, your complaints add up to a legitimate issue or argument for augmented T in a prescription like AndroGel.
My T should have been looked at in my late 20s by my estimate looking back. My complaints weren't being formulated to point my doctor at my testosterone. They can offer help only if they understand the problem.
Several people that contribute on this site are body builders. There are a number of body building supliments that will fill part of the bill for filling out. Protein powders and brewers yeast shakes used to spoil the air when my brother was dedicated to having a muscular body. Weights clanking and pulleys heard straining against the basement ceiling followed for a couple hours every day. Starting in 10th grade he wrestled at 123lb weight class by the end of the year he was moved up to 135lb class. Eleventh grade ended at 145lb then his senior year he entered at 154lb and finalled at 165. If only... It was so discouraging except to him. He had purchased a muscle building course that forewarned him it could take months just to ignite his muscle building metabolism. That sounded like bull to me but it was like magic. Four months of no weight gain was rewarded with about a pound a month on average for the year. You are going to develop strength and energy.
This is not something I feel comfortable suggesting because of some extreme results I have seen. Creatine, is a supliment sold in health food stores and such is a testosterone precursor. Taking it will maximize the amount of testosterone in your body. The danger I have worries over are men and women body builders who get hooked on the results it produces and maybe a little dependence physically. Do your homework and research this supliment for safety. If you feel it is alright, discuss taking it with your doctor. Please don't blow off the steps involving your doctor, you need to understand that they aren't there to judge you, they are your resource, utilize them to your benefit. When or if you are, say looking at taking recreational drugs, ask your doctor any questions you want about taking them. Chances are best that your doctor will be frank and non judgmental. Chances are high your doctor will be impressed by your maturity.
Go T!,
LL
that would be so embarrassing to say I have low libido! I'm just worried that the doctor will discuss this with my dad or something, even tho I'm 18.
How would such a Convo go?
LittleLab4CF
Super Moderator
Maybe it is the other way around. You find the possibility of low T embarrassing. You have a legal guarantee of privacy. If you want absolute assurance ask to update your privacy agreement and list specific issues that can be shared with whom or visa versa. More simply tell your doctor you don't want to share specific topics. They are taking a career ending risk when written or often verbal calls for confidence. Doctors try to protect both of you by never betraying a confidence.
Make some notes and print your topic post and any of your threads for reference. Underline or highlight those sentences that contain a specific complaint like zero energy. Doc, I am concerned about my testosterone level. 'And why do you think that?' I see physical differences between my development and other guys like muscle development and high energy. 'So what's wrong with your energy, why do you think that?' It is as if I am 16 when guys usually develop a deeper voice and everything else related like this. Guys are supposed to be nearing our peak sexually about now and that isn't happening. Look, I know testosterone production drops rapidly with CF and I would like mine checked. 'Well, this could be a first but let's order one up'.
There is an ugly impediment to the best results with a doctor. It can be unnecessary to do a brain CT for a headache but if you insist on a lingering concern the doctor will order the brain CT. I don't consider your concerns trivial. Eighteen year old men don't often konk women on the head and drag them to their cave for sex but there is something extraordinary about our sexual transformations. A healthy sex drive is not some slam saying somebody is oversexed, we need that sex drive.
Ok, now the results are back. If your testosterone is low, any worry or embarrassment will seem as overdone. This visit becomes a no brainer. Your parents, especially your father understands the importance of having a healthy testosterone level. You probably wouldn't be here if his T was down at 18.
I got this started under the wrong topic. Let me fix a couple typos and I will post my stuff under Testosterone. I am happy to continue on this. The topic is a good one.
LL
Make some notes and print your topic post and any of your threads for reference. Underline or highlight those sentences that contain a specific complaint like zero energy. Doc, I am concerned about my testosterone level. 'And why do you think that?' I see physical differences between my development and other guys like muscle development and high energy. 'So what's wrong with your energy, why do you think that?' It is as if I am 16 when guys usually develop a deeper voice and everything else related like this. Guys are supposed to be nearing our peak sexually about now and that isn't happening. Look, I know testosterone production drops rapidly with CF and I would like mine checked. 'Well, this could be a first but let's order one up'.
There is an ugly impediment to the best results with a doctor. It can be unnecessary to do a brain CT for a headache but if you insist on a lingering concern the doctor will order the brain CT. I don't consider your concerns trivial. Eighteen year old men don't often konk women on the head and drag them to their cave for sex but there is something extraordinary about our sexual transformations. A healthy sex drive is not some slam saying somebody is oversexed, we need that sex drive.
Ok, now the results are back. If your testosterone is low, any worry or embarrassment will seem as overdone. This visit becomes a no brainer. Your parents, especially your father understands the importance of having a healthy testosterone level. You probably wouldn't be here if his T was down at 18.
I got this started under the wrong topic. Let me fix a couple typos and I will post my stuff under Testosterone. I am happy to continue on this. The topic is a good one.
LL
LittleLab4CF
Super Moderator
CORRECTION; I made a major typo. When I was writing my post I couldn't remember if the supliment was creatinine or creatine. I corrected my post but not before it was captured in a quote. Creatine information is less reliable than I thought. Wikipedia's writeup is typical. It does jump start your metabolism by providing a high dose of a metabolic enzyme used in our cellular power plants. If you wish to try creatine, let your doctor know your plans. This assumes your T is nice and high. It is widely used with good results for MS and ALS patients. There are toxins that require periodic tests your doctor should monitor. If you want to bulk up, be cautious. Periodic tests for liver and kidney health is good caution and never exceed the dosage is a must.
LL
LL
i used to use it but my drs said it wasn't the best thing for me cause of how much water you need while taking it
LittleLab4CF
Super Moderator
Enzo, I am switching over to your post on Testosterone so look there.
Megan420, My apologies, I didn't mean to derail your topic post. I will be more careful in the future.
LL
Megan420, My apologies, I didn't mean to derail your topic post. I will be more careful in the future.
LL
chelsearose0112
New member
Well this is one of the one places people would actually understand the situation, but it is still equally embarrassing... Around the time I found out one pancreatic enzyme wasn't working for me and was in the process of switching over my boyfriend at the time came to spend the night and he brought a few friends who just cluttered the couches and such. But when I woke up the next day I was stretching and reached down and had horribly discovered I had essentially leaked that gross undigested fatty oil in my sleep. He hadn't woken up yet and no one else had thank god so to calmly diffuse the situation by just popping myself out of bed with my boyfriend, I quickly went to the bathroom and made him bring me a pair of pants because "it was cold" and opened the door mortified and waiting for everyone to just be looking here I was sleeping like what the %*#%*. Somehow there were 0 stains anywhere but on me and my cloths so I was the only one who knew.... Oh the joys oh being a cfer haha