Something's off

[Cat-a-Tonic]

Do you ever have one of those days where things are just "off"? Like nothing feels right. I'm having that kind of day. I haven't had any d today, I don't have pain right now and no nausea or anything else except I'm a little gassy. I should be feeling good! Instead, I feel like everything just feels wrong. I slept wrong and I just feel weird. It's hard to explain, it's more of just a vague feeling than an actual thing I can put my finger on. Like I'm not comfortable in my own skin right now. I hope this feeling is not a precursor of a flare! Does anybody else get this kind of feeling, and if so, does it usually precede a flare for you?

 

[Jerman]

Hiya Cat, perhaps you are stressing or worrying about something? Sometimes i can actually feel the emotion (stress, anger, sadness) before my mind lets me know what is going on. Maybe you could just fly under the radar today? Read a book, watch bad daytime TV, or do something that makes ya happy. If not just allow yourself to have an off day, you do not need to have a reason....Hope your spirits are better soon.

 

[Cat-a-Tonic]

Thanks Jerman. I am stressing about stuff but no more than the usual - trying to balance work, home life, debt (doctor bills & credit card bills), etc. but I'm always stressing about that stuff. My brother's been living with us for about a month now but he hasn't brought any stress into the household - he works on a project during the day, and in the evenings he watches TV with us. So I don't think I've got any extra stress than usual, which is odd because I can't explain why I feel so off today.

Sadly I can't watch bad TV or read a book right now, gotta work. Fortunately I don't have a lot of projects going on today so I can sneak a peek at the forum every so often when I have a bit of downtime, like right now. I'm not going to post a whole lot today though because I am just not feeling like myself and don't want to say the wrong thing or upset anyone. Ugh, I hate this feeling! It's so weird. I should have called in and stayed in bed, but that would have been silly because I'm trying to save my sick days for when I'm flaring... I just don't know what to do. Hopefully this feeling goes away soon, I don't like it!

 

[Jerman]

Maybe setting up something that you enjoy to do for after work i.e.- chick flic, candles & a bath, kick the cat, what everworks for ya. ::isclaimer- Jerman does not promote violence towards cats and no cats were harmed in the preparation of this thread::::

 

[Jennifer]

Sounds similar to how I feel during a panic attack. You don't have to be worrying about something to get one. I hate the feeling myself and sometimes it will last 10 min to all day. Another thing it could be is sleep related. Sometimes I can feel quite odd if I don't get enough sleep. You may not even feel tired but sometimes jittery or have various other symptoms that are hard to explain like you head feeling fuzzy.

Its possible that it could be stress related. Things don't have to be going wrong (even happy things add to stress) and you don't have to be thinking about it at the time to get physical symptoms from anxiety.

I hope you start feeling better soon.

 

[Cat-a-Tonic]

Crabby: Jittery, fuzzy, yes! I do feel like that! If this is a panic attak, it's odd because I've had panic attacks before, but they were like the "curl up in the fetal position and weep" type of attack, not something so subtle as this. I definitely slept weird - one of those sleeps where you're not sure if you're having dreams or if you're awake and your brain won't shut off. So I'm really not sure how many hours of sleep I got, but it wasn't restful in any case. I'll definitely be taking a sleeping pill tonight to try to avoid a repeat of this day. Thanks for your reply, it's good to know someone else has felt the same way and that it isn't necessarily because a flare is coming! Phew!

 

[Jennifer]

I actually kind of feel that way right now Cat cause I know I didn't sleep well but I'm an insomniac so I'm kind of used to it and just try to brush it off. Try anything that you know helps you relax. Sometimes cool water on the face, neck and hands helps a little. Maybe you could wet a paper towel in the bathroom where you work. Maybe some nice hot tea too.

 

[Cat-a-Tonic]

I actually just drank some hot tea (peppermint, yum), and in a little while on my lunch hour I plan to go to the park and sit outside for a little while. I'll try the wet paper towel thing too, thanks for the idea.

 

[Cat-a-Tonic]

Jerman, I've often wished that there was a human equivalent of catnip. It looks like fun! My cat goes crazy for 10 minutes and then takes a 2 hour nap - sounds like heaven! Don't kick your cat, but feel free to tease the cat about how it's going to be kicked. That seems to help me. I also blame everything on the cat, no matter how implausible it is that she's the perpetrator. The remote's gone missing? The cat did it! There's no food in the house? It's the cat's fault! My car broke down? I blame the cat!!

 

[Cat-a-Tonic]

Oh no...
So I think my initial suspicion was right, this "off" feeling is seeming to be a precursor to a flare. My "off" feeling only seemed to increase as the day has gone on. Then, I ate lunch, and although I felt okay before and during my meal, a few minutes after eating I got really nauseous and my face went pale and I started having some d and some cramping. The pallor in my face is the worst sign yet of an impending flare - I usually only go pale if I'm flaring. I took some Zofran for the nausea and it's helped somewhat, but I still don't feel very well. I've just got another hour of work left and then I can go home and curl up with my barf bucket and my heating pad. The good news is, I'm already going to my GI on Thursday, so if I'm in a flare I don't see how he could say no to putting me back on pred. In the meantime, I'm going to spend the next hour trying not to cry or barf at work. Wish me luck that this flare is minor and that I get to go back on pred soon.

 

[Astra]

Aw Cat lovie!

Oh no, hope it's not a major flare coming, hope it's just a little un!
Thank God you're going to see GI this week, hopefully he'll nip it in the bud before it takes hold.
Weird that feeling tho, I get that, my indicator is a bubbly watery feeling in my mouth!

it's what is known as malaise, here's a Wiki link on it

http://en.wikipedia.org/wiki/Malaise

hope you feel better soon hun
take care
xxxxxxx

 

[Jennifer]

Lucky break on seeing the GI in a couple days then. Hope you feel better soon Cat.

 

[Cat-a-Tonic]

Thanks Joan & Crabby. I slept kind of poorly in spite of taking a sleeping pill, and I was up at 4:30 this morning. I'm probably going to call in sick to work today and just rest. My nausea isn't too bad right now but we'll see where it's at after I try eating a little something. I am cramping so I've already got my old pal the heating pad on, and I feel really fatigued. Yep, it's seeming like the start of a flare, although it's not too bad so far. Just over 24 hours until I get to see my GI, so I'm not too worried. I'm just going to take it easy until then - a good book and bad daytime TV should do the trick.

 

[DustyKat]

Thinking about you Cat...............................


:hug::hug::hug::hug::hug::hug::hug::hug:


Take care,
Dusty

 

[Rebecca85]

Hope you get some rest and good luck at the docs tomorrow!

 

[Cat-a-Tonic]

Thanks Dusty and Rebecca. I'll post an update tomorrow after I've been to my GI.

I've been thinking and I wonder how far in advance my subconscious knows a flare is coming - last week, I bought another pair of sweatpants, thinking "these will be great and comfy to wear the next time I have a flare." Maybe just a coincidence - the sweatpants were on sale, otherwise I probably wouldn't have bought them. But I think I will definitely try to pay more attention to any subtle cues from my body that a flare might be coming - my "off" feeling yesterday was apparently a big red flag waving at me, and I wonder if there were other, more subtle signs that my conscious mind missed seeing.

 

[Cat-a-Tonic]

Update on me - I saw my GI today, and I'm fairly encouraged with what he wants to do. He wants me to have pill cam ASAP. He said I can't go back on pred until after the pill cam, so that nothing is masked by the pred. But then afterwards I can either go on a short taper of pred, or possibly Endocort. My insurance doesn't cover Endocort and my understanding is that it's really expensive, so my GI's office is making some calls to see if they can get me free or discounted Endocort.

My GI was a bit more compassionate today than the last time I saw him - last time, he said he doesn't think I have crohn's. Today, he admitted that there's not much else this could be, and he really wants to find something on pill cam. He said that if he even finds a little redness or minor inflammation on pill cam, that would be good enough for him at this point. He said he knows my pain is real and he wants me to have some relief, but he's hesitant to put me on any long-term meds until he knows for sure what is wrong with me.

So, for now, I'm waiting on the hospital to call me to schedule the pill cam, and also waiting on my GI's office to make the calls about Endocort. I hate waiting, especially since I still feel like I'm in a flare. I hope to have the pill cam done really soon so I can start taking pred/Endocort! Wish me luck.

 

[Rebecca85]

Well let's hope you get your pillcam done quickly, and lets hope they find something this time! Glad your doc sounds a bit more sympathetic.

 

[bushydougie]

Oh thats much more positive news Cat! I hope you are feeling happier about the appointment and the direction your GI is going.
It's a shame he wont put you back on pred yet but understandable. I was wondering about the effects the pred will have for when I have my barium meal procedure. My GI hasn't mentioned the pill cam but from what others on the forum have said it seems to be one of the best ways to get a diagnosis so lets hope so
I am so glad he was more understanding. It's weird how they change, mine did too!
Well your good appointment has put a smile on my face and I am feeling pleased for you so hope you have similar feelings

Sam

 

[Astra]

Hey Cat
at last! moving in the right direction and someone doing something about it!
wishing you lotsa luck and hopefully some answers, you deserve a break and a dx!
xxx

 

[Jennifer]

I've never had the pill cam test done. I wonder if it'd be a good idea to use one on me because I've been having more and more symptoms for a while not but last last scope came back normal.

 

[Mayflower537]

Awesome news! I hope they get you in soon.

 

[Silvermoon]

Oh awesome news! One more step in the right direction.

...My insurance doesn't cover Endocort and my understanding is that it's really expensive, so my GI's office is making some calls to see if they can get me free or discounted Endocort....

Usually what happens with insurance coverage is the only cover no-name or "least expensive" brands... of course which there is neither for Endocort. However (and it sounds like it might be what your GI doc is trying to do), some insurance companies will accept a "letter of exception", where the physician writes a letter explaining why you must be on THIS particular medication, and then the company will cover it.

Hopefully it all works out for you, and good luck with the pill cam!!

 

[DustyKat]

Oh Cat this is so good to hear, YAY for you!

I hope things get arranged real soon so the waiting isn't too long. Sending tons of luck your way...................................


:goodluck::goodluck::goodluck::goodluck:


Fingers and toes crossed,
Dusty

 

[Cat-a-Tonic]

Thanks everyone, you guys are the best. I'm really hoping the pill cam finally gets me a diagnosis. I'll post updates when I get it scheduled.

 

[Dexky]

Sorry, I missed this thread Cat!! Hopefully, we will finally have a solid answer!! Good luck!!

 

[Cat-a-Tonic]

Thanks Mark! I'm hoping they call me today to schedule the pill cam. Hopefully they don't make me wait all weekend to get it scheduled. I'd call them myself but they can't do anything until they get the order from the doctor, and sometimes that takes a few days because for some reason not every area of the hospital is set up on the same computer system. So anyway, fingers crossed that they call soon!

 

[jamilea]

I hope you aren't feeling off today. I know you posted this a few days ago. When I am feeling off, I usually just attribute it to the fatigue I constantly feel or my hormones. lol

I hope they call you soon and I hope you find some answers.

Thank you for posting in my thread. Your words were helpful and gave me hope!

 

[Cat-a-Tonic]

Thanks Jami. I am unfortunately still feeling pretty off - I'm definitely in a flare, although it's not too bad as far as flares go. I got the call yesterday to schedule my pill cam - sounds like it'll be on Sept 16th, although I asked about the possibility of doing either the small bowel follow-through or the dummy capsule, and she said she'd have to ask and have someone get back to me next week. If I do the SBFT or the dummy capsule then it might push back the date of the pill cam.

I'm a bit nervous about it because the lady on the phone said that I have to do 1/2 of a colonoscopy prep prior to the pill cam - yuck! I got so sick when I had to do a full prep prior to my colonoscopy - even though I thought I drank plenty of liquids, I still got really dehydrated and was vomiting too. I got so dehydrated that I had to go to the hospital a few hours before my scope so that I could get IV rehydration. I literally was so dizzy I could barely walk and I couldn't see straight, it was kind of scary. So I'm really nervous about doing the 1/2 prep, I hope it isn't nearly as bad as the full prep was.

 

[Mayflower537]

I'm sorry you have to drink more prep. I feel for you - I had to down a bottle of mag citrate (just an over the counter laxative) and that was bad enough. I've still never had the experience of drinking nasty c-scope prep, but maybe you can beg for an alternative? The mag citrate was like salty sprite if I remember correctly and it definitely cleaned me out. Maybe someone who's had both can chime in as to which one is worse. I don't know how it compares to GoLytely or any of that kind of stuff. But yeah, I'm sorry you have to do any prep at all. Hey, that's not too far off though. Maybe you'll have some answers in about a month!!

 

[Cat-a-Tonic]

Hi May, I've actually never done the GoLytely type of prep either - the colonoscopy prep that made me so sick was the gatorade & miralax prep. It was easy to get down and didn't taste bad, but I got so ill from getting so dehydrated. So I think I am going to do the gatorade & miralax thing again as it is easy to get down, but I will drink TONS of other liquid along with it to try to avoid dehydration, and I'm going to try to drink it much more slowly this time - last time, I just wanted to get it over with so I could go to bed all cleaned out, so I drank it as fast as I could. That was probably a mistake. And last time, I was determined to be really clean inside so I drank all my prep and wasn't really paying attention to when my poo started to become clear. This time, I will stop drinking the prep when my d starts to be clear.

I am still nervous about all of this, mostly because of the prep. But you're right, I should be excited and not nervous - maybe I will actually have some answers soon! I can only hope. It's hard to be optimistic when everything else has come back normal, but I have read a lot of stories on this forum of people getting diagnosed via pill cam - and my GI did say that any small amount of redness or inflammation would be good enough for him at this point, so I've got my fingers crossed that this will yield a diagnosis finally. My goal all along was to get diagnosed before one year's time - early October 2009 was when I first got sick, so I may actually end up with a diagnosis just before it's been a year! That would be awesome.

 

[Mayflower537]

Oh, okay, I thought you had to down something gross like GoLytely. Maybe you're right, then, if you drink it slowly, it'll be better. Yeah, it's nice to get all these tips from professional c-scope preppers. Who else would know once your output is clear not to drink anymore?

 

[Cat-a-Tonic]

To be honest, I wasn't even sure if my output was clear the first time I did prep - it was like yellow/orange liquid but it had no chunks after awhile. But I kept drinking the prep because I thought it was supposed to turn absolutely clear, not orange. Then when I asked the nurses at the hospital about it, they said yellow or orange colored output is fine, that's considered clear enough for the scope. It was weird to me because I hadn't eaten anything that was yellow or orange - the gatorade I used for the prep was clear, and I had been drinking water, broth, and tea. Well, now I know! If it's yellow or orange, stop drinking the prep!