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09-16-2006, 06:05 PM   #1
xrayzerase
 
vent: a little nervous.. (long..)

i am glad to have found the "vent" area..(i think..)
i have been reading many stories here today..
i am trying to learn about crohn's as much as i can..(was just diagnosed like 3 weeks ago--even though i am 43)--(did have troubles along the way..but-like with everyone-got the "ibs" thing-or it isw in your head-or similar. ...not that the dr's didnt care at all..i don't know..but-diarrhea and cramps and heartburn-i guess until i had my gi go into my terminal ileum (via colonoscopy)-no one knew what was up. i am still in a bit of shock-but-it helps to not put my head in the sand..
my vent..
just-reading stories and all helps -knowing what symptoms to watch out for..but..
still-it is scary--and hard to read symptoms sometimes--and i don't like to call my dr unless i have to (like when i had a fever when i frist started the pentasa) (went away though)
thing is-lastnight-i woke up with some nausea--but-nothing too bad-so-i let it go.
i have been drinking only ensure and water today. all foods just seem to make me feel not great ..so-wanted to try this..(had 3 bottles today since 7 am)
but..the past 2 or so hours--feel like a tension in abdonmen and stomach (maybe just stress -tight muscles--or-empty stomach--i'm not sure) (i think less eating hasn't been great--but again--eating is not fun right now--and i do take in the ensure at least-and supplements)
but-i also have some "pain" (well..not "pain"--but-not cramps--not sure what to call it--in my stomach-as well as the tightness. but-otherwise i feel ok--altho heartburn has been acting up over past hour again.
i have had quite a bit of gas today..but..i have always had that--or--so it seems.
the pain/tightness is new though..so..not sure..
i hate over-reacting --so..i don't know..i guess play it out til tomorrow
i will take an ambien soon-just because it seems to help-and i get some sleep...(usually take a few hours to hit though..)
i feel some nausea--and it wasn't as easy to drink the 3/4 bottle of ensure to take the pentasa about an hour ago.
maybe i do need to eat..but..it is so hard to know what to do..
i see my dr thursday..
this in no way seems like some emergency--so-thursday seems fine..but--any new stuff..it is scary. is it just me-or -ever since i got diagnosed and put on meds (pentasa and entocort-mild crohns) i have noticed a few new symptoms.
good thing is i have only had diarrhea like 3x--including today...
just--this stomach thing-i don't know what it is..
ithe "pain" (or..gas? or--whatever it is-is in my chest area-center-..at least i think it is my stomach thats causing some trouble this evening...
i am going to ask my dr about getting a ct scan--just to be sure..but..he is very thorough-so whatever he thinks-if i need that-or some other test-or no test--i will know more thursday..but-need to check a few other things..
sorry..this is just scary...
2-3 days ago i felt a bit better-and it was great to just get back to some other stuff and not think about all this...but-it just seems to keep reminding me-i need to know more-and need to get it in control (if possible)-or-at least-be sure nothing else is going on..and be sure ..i dont know--this "pain" thing..just--scary..
ok--i am saying things over and over--guess i am in "worry-mode"
ps-i am glad yesterday i finally got a petsitter (one who works at hospital for my cat--she has hcm--she has been on meds a year--she is only 7 though) but-i feel better knowing that if i ever did have an emergency and had to leave her for more than a day--she'd get her pill and food-and good care. it puts my mind at rest a bit..as it was stressing me--worrying about that.. and my dad has an operation (rotator cuff surgery) in 1 1/2 weeks..so--yucky time. (he just had hip replacement)-and-i am also going crazy with not getting intol work (i am an artist) and..cumputer-work-it is good-but no way is it enough...this is just a true mess to get used to.
ok-vent over..sorry
andrea
09-16-2006, 06:43 PM   #2
steph
Member
 
Join Date: Apr 2006
Hi andrea, hang in there. in mid december it will be a year since my diagnosis. i am not going to lie. it was sort of a year of hell. i think you experience the whole range of emotions to the extreme. i think i have accepted the pain for the most part - of course you can bet that when i don't feel a damn thing - i soak it up for all it is worth and rub it in to whoever i run into.
i'm still not sure how to get a handle on it. trying to get off pred. - my body is dependent on it (i wish someone told be about that). i started 6-mp 3 wks ago, seems to be a miracle for the most part - after 4 months of daily pain.
one thing i have learned it to stay positive. it is much harder when everything hurts, esp over a length of time.
hang in there you will be fine.
take care, steph
__________________
Steph
09-16-2006, 07:01 PM   #3
xrayzerase
 
steph
thanks
as always..the ambien isn't making me tired yet--but it is taking the edge off the "pain" and "discomfort/s"..which i will certainly welcome!
wow-so-you are pretty new to this too...
i hope you can get off the pred asap.
glad the 6mp is helping. i have a funny feeling (well..not "funny'!) but..a feeling that the meds i am on may not be enough. i have learned here-however-that if i need something else-i would rather go for the 6mp than the pred. (if i amallowed/qualified to make that cjoice that is)
anyway-thanks for replying..ii hate hate hate being in worry-mode.
honestly-i just want to run outside and climb a small mountain or go into my studio and get nutty and back to work....--it is amazing how even going out to get coffee is so terribly missed as if the coffee were like finding a really cool gem on the sidewalk outside the coffee place...
ok..sorry-perhaps i shifted into "silly" mode ...
just-really-thatnks
andrea
09-16-2006, 08:19 PM   #4
steph
Member
 
Join Date: Apr 2006
tell me about it, it does make you silly. you really do end up appreciating the smallest things - it is crazy.
i have been drinking coffee (guilty of course) - but every sip is such a pleasure. man, if they want to make food commercials good - they should get ppl w/ IBD to do them. cuz we would make the food look orgasmic. LOL
09-16-2006, 09:08 PM   #5
Jeff D.
Senior Member
 
Join Date: Apr 2006
Hey Andrea, I understand completely where you are coming from. The first month for me was when I seemed to get so many new symptoms. At first After two years or so of constipation of differing severities. Then after I was diagnosed I started dealing with D. Then I would get horrible random stomach cramps. I got dizzy and could barely walk. I started to get anxiety and depression. All of this within the first week of being diagnosed. My GI said that it is most likely to be my body reacting too much to the stresses that had been paining me for so long have caused a reverse reaction. At least thats what I think he said.

I wish you the best of luck, prayers to you on Thursday.
09-17-2006, 08:31 AM   #6
mikeyarmo
Co-Founder
 
mikeyarmo's Avatar
 
Join Date: Feb 2006
Location: Toronto, Ontario
Andrea,

A bad day (or few days) is not really something to worry about. Of course this is all new to you, but in time you will see that day to day can be rather different. One day you are eating everything and the next you are only drinking water. The day after that you have mostly liquids and a light dinner, but after that you may feel fine again.

Is it scary to get new or worstened symptoms? Of course. But you need to become aware that some things are normal progressions of the disease. That is not to say that they should be ignored, but rather they should not be stressed over too much. If you are feeling bloated and are getting cramps, do not eat heavy foods. If things are quite bad then maybe do not put anything in your mouth for a few hours, and then try to slowly introduce water, or soup or juice and see how you tolerate it. If things are good you may want to go up to soft food or stick with the liquids for a while. But the important thing is that you always are getting enough calories and nutrition. If you feel fine on liquids try to have things besides water (like soups, juices, gatorade, jello, etc.) that has at least some other nutrional benefits (even if it is only sugar). Liquid drink like ensure, boost and resource can put a lot of calories into you, so keep going with those if you can. If you are finding the ensure boring, try different flavours, or different products. Switch them up during the day or whatever makes them the best for you to tolerate. They are usually better to take cold, so make sure you refrigerate a large enough supply to last you (which may only mean 2-3 in the fridge at all times).

Try and record the length, variety and severity of symptoms so that you can monitor how things progress and so that it will be easier to describe what you are going through with your doctor. It is not enough to say "I think my meds are not working" if not backed up with a lot of proof.

Good luck, stay tough and don't stress about anything. Going a day or two on liquids is not the end of the world, but the longer you stay on liquids only and avoid food, the more monitoring you need to do to ensure you are maintaining weight and getting all the nutrition you need.
09-17-2006, 11:14 AM   #7
xrayzerase
 
thank you to everyone for the replies..
i am now re-writing some of the important stuff from my journal to show my dr (don't want to bother him with too much).
i am sort of learning-bit by bit-what to expect-what to look for-and all -i guess that is why it is so great to learn all i can about cd.
i have lots of ensure in the fridge but..need to get more tomorrow (lost a little weight--but nothing to worry about yet..) i will try other flavors/brands ..and am gettin some healthy bland food at the health store tomorrow.
today is better..and i am finally able to focus on my work-and tomorrow want to get to my studio
this thing is a drag-especailly when in flare..but..i still am hopeful re the meds i am on and know i need to give it time--just have to keep reading up on it...but also--get back to normal life as much as possible--and fight this-but also try to get my mind off it a bit too..(which i am..some days are harder than others i guess.) but--it is always good to be/remain a fighter
thanks
andrea
09-21-2006, 10:20 AM   #8
Valentina
 
xrayzerase said:
still-it is scary--and hard to read symptoms sometimes...
is it just me-or -ever since i got diagnosed and put on meds i have noticed a few new symptoms.
I went through the same, the first time I started to read about what other people went/go through daily really upset me.. scared me to be honest. I found it extremely emotional to read it all, but didnt/couldnt stop, and I think in the end helped a lot, made me understand more and I feel more prepaired now when things pop up.

I also noticed that once I actually started to try to treat my crohns (had it for aound 11 years before) it just got worse and worse. my symptoms went from just unbearable to unlivable in a few short months. to the point of almost taking out my large bowel. they did eventually kick in though.. just took me almost 2 years to find the mix of meds that would work for me.

so long story short.. hang in there! it seems like an overload of info right now, but soon it will all just sort of "fit" and not seem so scary to read, and hopefully you wont have to wait too long for your meds to give you some relief.
09-21-2006, 07:25 PM   #9
Cara Fusinato
Sarcastic Forum Comedian
 
Join Date: Sep 2006
I felt the same way during my first flare-up. I had good days and bad days. Today, I am just on the edge of a bad day. Not quite there. I didn't chew carefully or something. No pain, no anything, but you just feel like it could almost be the beginning of something and it freaks you out. Calm, patience, watching the diet and working through it, tomorrow will be a better day. Hang in there. You'll get the hang of this illness soon. It's a learning process.
09-22-2006, 10:41 AM   #10
xrayzerase
 
thanks for replies
i am starting to adapt to the whole fact that i have crohn's..and..so..now-just have to make it part of my life and..yeah..just adapt...(which i am..)
i am still a bit confused about the med thing (now i will probably be starting remicaid or-he mentioned 6 mp or aza--and..who knows..(?) probably the remicade is likely. i need to learn what med does what..i kind of was hoping i wouldn't need "next step" meds..but..oh well. in a way..i welcome them if they help make life a bit more ..(noraml?) (or..where i can get back to work full time w/o feeling bad by noon..)
i admit-the 6 mp and aza scare me a bit (the side effects)..it seems remicade may not be so bad?..but i guess they work differently--and..i hope i dont need both (as well as stay on the pentasa)
i am on entocort another 6 weeks (8 total)-so -i guess maybe til that is over i wont start the new stuff -or maybe-see what the ctscan and other tests show
this whole thing is endless stuff to learn though..
i know-really-it is my dr who makes the decisions--but-i need to know what is going on as much as i can...and-want to avoid pred if i can...
ok..sorry...i am not depressed -or even nervous..just-frazzled with being a bit confused about all this new stuff that has/and may happen...
anyway--thanks..
better stop writing here..i can see i am too hyper and anxious right now -and am rambling ...
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