Hello to you, from me!

[MysteryLocket]

Well, I'm never really good at making intro posts. But I figured I'd start here (usually I jump right in, and get around to doing the intro posts at a later date, lol!)

I figured, why not finally get around to joining somewhere who has people who actually have crohn's and knows what it's like. Usually when I tell people I have crohn's they just tilt their head and ask "what's that"? .. Up until recently, my only response was "um.. not sure actually.. this thing that makes my tummy hurt. and makes it where I have to have transfusions all the time." But after doing some research of my own, I know how to better describe it, using descriptive words.
I was just recently diagnosed with Crohn's not even a full month ago. Went into the ER because I thought my bacterial vaginosis (bv) went into pelvis inflammatory dieseas (PID), and they did a CT Scan. When they came back with the results, they said I had bad inflamation in my lower colon, and that they were going to admit me into the hospital to see the GI doc the next morning. And so they did... Long story short.. They suspected Crohn's from the beginning. And each test added to their "it is!" column. To where now, they are just like "yup, it's crohn's".
Currently, I am on a steriod treatment Prednisone. Hated it at first (the higher doses really messed with my other meds, and my mood.). I went from 1 pill a day (Before this diagnosis) to over 25 pills a day. My alarm clock constantly squaking at me telling me to wake up, it's med time again. And the worries of if something is "ER worthy" or not.
Anyways, I also like walking, and adventuring the outdoors. I'm into the paranormal. I also like writing and being on the computer. (even though my grammar is horrid, lol). I am also a pet lover, and have a four legged furry daughter of my own (she's a cat. hehe) lol. - which she is currently trying to lay on top of my keyboard, so I suppose she is trying to tell you all "hi" as well

Sorry for such the long intro, but I hope you have a awesome day(or night)!

 

[seaofdreams]

Welcome MysterLocket, glad you found us!
Prednisone messes with my head something terrible so I know where you're coming from
I hope you hang around

 

[MysteryLocket]

Thanks
I've bookmarked this place, hehe
And it's good to know that i'm not the only one with the prednisone issue.

OH! and i'm 23yr old. lol - I forgot the most basic thing in introductions.

 

[DustyKat]

Hi MysteryLocket and :welcome:

Great to see you here! It's good to hear that you had a fairly quick diagnosis. Believe you me, that's not a long intro compared to mine.:lol: There's loads of friendly and supportive people here so please stick around. Good luck and welcome aboard!

Take care,
Dusty

PS Just gotta ask.................what's goin' on in Texas! Seems to be lots of newbies comin' from Texas.

 

[MysteryLocket]

Hi
Thanks for all the warm welcomes

Haha, not sure. Pretty hot here right now though. I was on acne meds for awhile in my life, and my parents thought i might of taken the same med that was showing on the tv that could of caused people to have crohn's. (ironicly that commerical started airing the same day I got my diagnosis), but I'd never taken that one that was mentioned before. Sooo. *Shrugs* lol.
(oh and i 'lol' a lot when i'm tired. and in random places as well. )

 

[Dexky]

PS Just gotta ask.................what's goin' on in Texas! Seems to be lots of newbies comin' from Texas.

That's the first thought I had as well!!

Anyway, welcome ML!! You will find on here that, yes, people really do care how you feel. The acne med that's involved in the class-action suits is Accutane. Good luck!! Hope you stick around!!

 

[Manimation]

It seems like people who had BAD acne before taking prednisone lost it, then got it back the second they stopped taking it, and the people who had some acne or no acne, got HORRIBLE acne a month into taking prednisone. I got terrible acne. If that symptom weren't present I wouldn't have minded so much because it gave me a huge appetite as well.

And like everyone says, your intro post wasn't long. I just rambled up a storm so don't feel bad.

 

[MysteryLocket]

That's the first thought I had as well!!

Anyway, welcome ML!! You will find on here that, yes, people really do care how you feel. The acne med that's involved in the class-action suits is Accutane. Good luck!! Hope you stick around!!

:ysmile: :rosette1: Thanks! (i'm likeing these smilies on here as well. lol!)
And I think i'm starting to like this place a lot. Hopefully I can contribute as much as everyone has been helping me on here.
yah that one! I couldn't remember the name of it, i just knew I never took or used it.
Thanks again for all the nice warm welcoming's! ^_^

 

[MysteryLocket]

It seems like people who had BAD acne before taking prednisone lost it, then got it back the second they stopped taking it, and the people who had some acne or no acne, got HORRIBLE acne a month into taking prednisone. I got terrible acne. If that symptom weren't present I wouldn't have minded so much because it gave me a huge appetite as well.

And like everyone says, your intro post wasn't long. I just rambled up a storm so don't feel bad.

Yah, I got horrid acne at first on the pred. It made me learn the diffrence from acne and pimples. cause I would keep pushing and trying to get rid of them, but they just kept there and wouldn't pop and only got bigger and more of them. and i was spazing out. but i was on 4 pills in the morning, now i'm on 3, so also the acne is just one here and there now.. but the weight gain i'm not too fond of either. lol!

^_^ hehe, i'm glad i didn't post too long. I always fear of posting too much. (my longest posts seem to be rants and vents. lol!)
I notice you are new-ish too, so welcome aboard too

 

[My Butt Hurts]

Hi ML -
What meds are you taking? Is there a way that you can schedule them so you don't have to wake up to take them? did you mean in the middle of the night? Or are you just not sleeping well so it happens during the day?
I would think that you should be able to take your last dose before bed, and take the next dose in the morning, depending on the med.
Glad you found us!
MBH

 

[Manimation]

Definitely a huge difference. On prednisone if i popped everything in the morning, by lunch theyd be back, and in new places. It was insane how quick theyd come in. And also, I may be the only one who was happy gaining weight cause I'd been so skinny all my life. It was nice to bulk up. Grocery bills were scary though.

 

[Dallies]

Hi Mystery and welcome to the forum xxxxxx

 

[lseibert]

:welcome: MysteryLocket,

You are not alone with the Prednisone, it messes with my head, makes me feel sweat just walking around the store. I hate it and right now I don't see an end insight to stop.

Glad you found the forum, it's has helped me and there are so many nice people...

:rosette2:

 

[MysteryLocket]

Hi ML -
What meds are you taking? Is there a way that you can schedule them so you don't have to wake up to take them? did you mean in the middle of the night? Or are you just not sleeping well so it happens during the day?
I would think that you should be able to take your last dose before bed, and take the next dose in the morning, depending on the med.
Glad you found us!
MBH

Hey

And I'll add a siggy with the meds i'm on
I wake up in the middle of the night. Because the 4 hr ones are prn, but also the pentasa is every 6 hrs. And i don't actually have a very set in stone time with those, because I tend to sleep past the few beeps that my alarm gives off before shutting itself off. :-\

 

[MysteryLocket]

Definitely a huge difference. On prednisone if i popped everything in the morning, by lunch theyd be back, and in new places. It was insane how quick theyd come in. And also, I may be the only one who was happy gaining weight cause I'd been so skinny all my life. It was nice to bulk up. Grocery bills were scary though.

Oh yikes, I'll be happy to be done with this prednisone stuff. Oddly i found out that i actually LOST weight yesterday since my last doc appointment. But my body and size of my body seem to state otherwise. stupid steriods.
hehe, groceries can be quite pricey (As i have been noticing lately since i'm buying them now. lol!)

 

[MysteryLocket]

:welcome: MysteryLocket,

You are not alone with the Prednisone, it messes with my head, makes me feel sweat just walking around the store. I hate it and right now I don't see an end insight to stop.

Glad you found the forum, it's has helped me and there are so many nice people...

:rosette2:

Thanks again for all the warm welcomeings! ^_^

Yah, I don't wish the pred on anyone, but at the same time, I'm glad i'm not alone. I hope the end will be soon with the pred. (I know if i'm still not okay after all the tapering is done, I wont be going back on pred tho, cause i refuse! lol- not sure what scary thing lays next after that, but I figure it's worth a shot than going through this again. :-\ )

 

[My Butt Hurts]

I wake up in the middle of the night. Because the 4 hr ones are prn, but also the pentasa is every 6 hrs.

I know this sounds like I am being difficult (since I already asked), but honestly I'm not trying to sound that way.
Maybe someone else will pop on here and clarify it for me, or help you out.
I think it is soooo ridiculous that you are waking up to take your meds. Sleep is a big part of healing I think, and if your sleep is being interrupted, that's not okay.
I've seen most meds prescribed by # of times per day, and then secondary was the minimum time between. For example, I take pentasa 4 times a day as directed, and the minimum time between doses is 4 hours. I take mine when I wake up in the morning, then with lunch, with dinner, and before bed. It ends up being about 8:30am, 1 pm, 6 om, and 10:30 pm. I would never set an alarm to take pentasa in the middle of the night.
I can't speak for your inhaler ones, but I am wondering if you are focusing too much on the time inbetween for a lot of them, rather than the number of doses per day.
Anyhoo - that sure is a ton of stuff that you are taking. I hope you can get it cut down a bit.

 

[DustyKat]

Sorry, I'm a bit confused.........so you are only taking the PRN when you need them, not to a schedule, is that right?

Dusty.

 

[MysteryLocket]

I know this sounds like I am being difficult (since I already asked), but honestly I'm not trying to sound that way.
Maybe someone else will pop on here and clarify it for me, or help you out.
I think it is soooo ridiculous that you are waking up to take your meds. Sleep is a big part of healing I think, and if your sleep is being interrupted, that's not okay.
I've seen most meds prescribed by # of times per day, and then secondary was the minimum time between. For example, I take pentasa 4 times a day as directed, and the minimum time between doses is 4 hours. I take mine when I wake up in the morning, then with lunch, with dinner, and before bed. It ends up being about 8:30am, 1 pm, 6 om, and 10:30 pm. I would never set an alarm to take pentasa in the middle of the night.
I can't speak for your inhaler ones, but I am wondering if you are focusing too much on the time inbetween for a lot of them, rather than the number of doses per day.
Anyhoo - that sure is a ton of stuff that you are taking. I hope you can get it cut down a bit.

Nah, I dont find it sounding like your being difficult at all.
When i first got home from the hosptial for the first time was probably the biggest issue i had with my meds, because i went from taking just the vyvanse when i woke up, to having a whole pink hospital tub thingy full of medicene bottles. And all seemed to be at random, diffrent times from eachother. And I found myself overwhelmed.
Now i'm starting to see theres a pattern to atleast the pentasa. My script says "Take 2 capsules by mouth every 6hrs" (which comes to be a total of like 1000 mg's of it. (cause one capsule is 500mg)). I often joked with my gi about how they needed to make an ambiene CR kind of med for Pentasa. lol .
The time on when i take my meds change a lot. Because I either automatically set my alarm for 6 more hours, then fall back to sleep. or i just sleep through the few beeps that my dinky little alarm clock gives out (don't have the funds to buy one that actually works well). And the pentasa's time seems to change daily, so I can't stay on a normal timed schedule with it, due to my sleeping through the alarms, or being away from my alarm when it goes off, and forgetting (which i know is something i have to work on. but i haven't been able to overcome yet.)
As of today, i'm out of pain meds, so that sorta takes those off the list.. but now i'm just not sleeping at all for i drift off just to wake back up and trying to reposistion myself so i can be some what comfortable enough to sleep. :-\ :ybatty:

 

[MysteryLocket]

Sorry, I'm a bit confused.........so you are only taking the PRN when you need them, not to a schedule, is that right?

Dusty.

yup. just when i need them.

My pain med was getting to be 2 every four hours. but i wouldn't set an alarm for them (except for when i went through a time that i was in horrid pain even with them, and i cuoldn't even fathom what it wuold be like without them. so i was setting an alarm every 4 for them as well. But I tend to wake up around the 4th hour after my last dose out of pain.
and the creme is prn, but i'm to use it after every BM. I guess they call it prn cause there's no set time that i'll be on the toliet.
and the nausea med, that's a prn too. but for that to work, i have to nip it in the butt before it gets more than just a quezzy feeling (which right now, is constant).

 

[Manzyb]

I am on Pentasa also. I take 8 pills, 4 twice a day. I don't really take them on set times. I usually just take them when I remember. I take my first dose in the morning and usually one at night, but I really don't think you have to worry about exact timing on it!

I, just like mybutthurts, is not trying to harp on you!! But you honestly don't have to take them at the same times exactly 6 hours apart. :0)

 

[Astra]

Hi Mysterylocket
and welcome

Yeah I have to agree, you don't need to take Pentasa at exact times. In fact, it doesn't mention every 6 hours on my box of meds, just that it's a slow release med. I'm on Pred and there's no bloody way I'd be gettin up in the middle of the night to take Pentasa! Bad enough trying to get the hours in as it is! I take all my meds first thing in the morning after breakfast, and the Pentasa spaced out after meals during the day.
Then about 10pm, I take 25mg amitriptyline which conks me out for the night!
Sorry if I sound like I'm going on too, but you don't have to make it such hard work on yourself, you need un interupted sleep, sleep deprivation will creep up on you if your patterns are disturbed like this.
anyway glad you found us, lots of friends here for you and support.
lotsa luv
Joan xxx

 

[Crohn's 35]

I know this sounds like I am being difficult (since I already asked), but honestly I'm not trying to sound that way.
Maybe someone else will pop on here and clarify it for me, or help you out.
I think it is soooo ridiculous that you are waking up to take your meds. Sleep is a big part of healing I think, and if your sleep is being interrupted, that's not okay.
I've seen most meds prescribed by # of times per day, and then secondary was the minimum time between. For example, I take pentasa 4 times a day as directed, and the minimum time between doses is 4 hours. I take mine when I wake up in the morning, then with lunch, with dinner, and before bed. It ends up being about 8:30am, 1 pm, 6 om, and 10:30 pm. I would never set an alarm to take pentasa in the middle of the night.
I can't speak for your inhaler ones, but I am wondering if you are focusing too much on the time inbetween for a lot of them, rather than the number of doses per day.
Anyhoo - that sure is a ton of stuff that you are taking. I hope you can get it cut down a bit.

I gotta agree with MBH, doctors prescribe dosages in a 12 hour period not 24. You could be overloading yourself and be sicker. I have never gotten up to take meds, not in this life time. Sleep is so very important!!

 

[MysteryLocket]

Thanks! I will try a full night sleep tonight, and just take them throughout the day.. I'm kinda worried about if I dont do it exactly every 6 hrs i'll have an over dose or something tho.. how do i stay away from that happening?
Within a 24 hr period i take pentasa 4 times a day... (leaving out the 6hr thing) ... waking up around 8, and falling asleep anywhere between 9pm and 3am. (I usually go back to sleep after the 8am pills tho. and wake up on my own around 10am), then a nap around the afternoon time.
This whole medicene thing could be a lot less stressful if I didn't have to wake up for it.

And not at all! I don't find any of this as harping or anything. It's actually quite helpful! ^_^

 

[MysteryLocket]

T.T ... just like now.. apparently my alarm is on the sprints, cause it didn't go off at 5:38, and it's now 7:31 (and i only looked over cause my tummy is starting to hurt and i was like "o.0 it feels like i'm in need of medicene.. what time is it? when's my next dose- o.o what?! " lol and then i spaze out. lol!)

 

[Manimation]

I remember when they started me on antibiotics, while I was still in the hospital, freaking nurses would start coming in at midnight and then every hour till morning. I asked the doctors how the hell anyone sleeps here. Sleep is really freakin important. It's kind of how we stay alive, much less healthy. They told me that some hospitals are finally starting to survey patients about their sleep when in hospitals and FINALLY taking a close look at the effects. The antibiotics said every 6 hours but the second I got home I said forget it, one before bed and one when I wake up. It seemed to work out.

 

[MysteryLocket]

I remember when they started me on antibiotics, while I was still in the hospital, freaking nurses would start coming in at midnight and then every hour till morning. I asked the doctors how the hell anyone sleeps here. Sleep is really freakin important. It's kind of how we stay alive, much less healthy. They told me that some hospitals are finally starting to survey patients about their sleep when in hospitals and FINALLY taking a close look at the effects. The antibiotics said every 6 hours but the second I got home I said forget it, one before bed and one when I wake up. It seemed to work out.

*nods*!!! Yes I know, EXACTLY!! lol. Then the nurses wondered why I started having crying spells. No food + barely any sleep = one emotional wrecked Mysterylocket. lol.
I'm giving the pentasa a try on no waking up schedule. lol. so far I think it's going pretty well...