Very tired/ back on entocort/ :( :(

[xrayzerase]

very tired/ back on entocort/

hi--i know i'm not here as much
been trying so so hard to pretend--or not think about being "sick"
i don't know.
but now..it just--i mean-i know it doesn't go away---but--
going to gi on a last minute thing
he wants me in
VERY tired--worry i may be anemic (sp?) or need b12 or something--but i dont know what it is. it mostly started when tapering of steroids--i went from 3 to 2--went "fair"-but once i got to 1--the tiredness hit. so-not sure if that is related. also this med besides the ativan--um for spasms (have ibs too) called:chlordiazepoxide/clidinium (librax)-3 pills a day. ativan was 3 -sometimes 5-a day-usually 3--of .5 mg) and ambien at night. but did this for a couple months-no weird tiredness like this. this is sort of almost sudden. also -no appetite again. not totally nauseaus-but-no hunger. drinking ensure and had a few crackers w creamy peanut butter for protien.
i dont know.
i called him tuesday-and i had another dr appt yest--so-he asked about friday. so i go in for bloodwork-and he told me to start on entocort again=3 pills-so i am on 3 again-since yesterday. no diarrhea-but more bm's than usual-like 7 or so-and they sting more. and some lower ab cramps and also bladder area cramping.
he mentioned do the entocort now--but we will discuss other meds now. i asked which. he mentioned 6mp--guess that may be first-not sure. or maybe the entocort for another 8-12 weeks and taper-and try again..i dont know. will know more tomorrow...
also feel i get colder more easily-and hard to focus on stuff. really wonder if it's anemia. i know-cant guess--he's doing bloodwork tomorrow. my gyn is doing a full hormone bloodwork thing the day just before i start taking the pill after my period. so-checking that too.
but this tiredness-extreme tiredness--has anyone had that?
i am worried
feel like i'm getting sicker.
yeah-the diarrhea is gone. and the ativan totally gets rid of the heartburn. so..thats good--but--now : new stuff.
i HATE this
just like everyone here--i want to just not think about this and live and --this keeps messing everything up
sorry so blah
but feel awful and a little nervous..

andrea

 

[Nancy Lee]

So sorry....

Ahh Andrea, I'm so sorry to hear you're not doing well.
Let us know how you make out with the bloodwork,
keep us posted and we'll be thinking about you...

In the meantime....

I'll say a prayer for you.

Nancy

 

[Cara Fusinato]

Hang in there . . .

 

[andilynn09]

I, too, am very tired all the time. Part of it is that when your body is costantly fighting a chronic disease, it wears itself out a whole lot more. I also got even more tired after going off prednisone...part of that is because the steroids give you more energy while you're taking them. I also take pentasa and azathioprine, and that aza also can cause fatigue. I can sleep for 8hrs , and can still barely keep my eyes open at work. I too am anemic, and have to take iron pills and a multi vitamin plus iron. It is very common for crohnies to be anemic...I would be surprised if you aren't.

Good luck at doctor....I"m sure all will go well.

 

[xrayzerase]

just saying thanks for replies.
dr: not great.
frist: prob not anemic--but possibly need B12--not sure tho.
he took blood and told me i am back in flare--and to stay on the entocort (3 pills again) for now--we may taper again and see--but he is more on the road of wanting to start me on 6mp. then he said we can either up the dose of 6mp (if i tolerate it) or add remicade to the 6mp. or we can talk about just remicade.
he told me my last bloodwork showed my c reactive protein(?) was high--i read a tiny bit-and i guess it means inflammation--but-hope it doesn't mean it's more--like the inflam. is really agggressive? i don't know anymore.
he did say that due to the bloodtests/ other stuff-and now going back into flare-that my crohn's is not mild. it actually is more moderate-severe.
i started back on 3 entocort (today is my 4th day) (was down to one entocort a day before that) but still feel very tired and nauseaus and have more bm's (bet 7-9) (was down to like 3. and they sting when coming out again. no D tho. and ativan keeps the heartburn away--altho today i feel it a bit--and just feel off in general.
had low grade fever lastnight.
yeah--i know-flare up.
i was just so hopeful i was in remission and would be ok on just pentasa. and that i had mild c. nope. oh well.
i just hope there are no other problems
does anyone know much about c restrictive protein?
i worry cause it mentioned more likely to raise chances for cancer-and since my dad had colon cancer..i guess-that is another worry. i also worry i wont take to these other meds. then what?
i know--jumping too soon.
just---this flare seems worse than before i started the meds.
is that common?
he did give me a site to order crohn's-speific multi-vitamin in case anyone is interested:
www.forvia.com.
i am also having a hormonal test done the day just before i take my first pill after my period.
so--cover all bases.
anyone have any takes on what seems "better"?
6mp or remicade or both?
it seems he is saying it is up to me--though-he is also waiting for the blood results-so-i guess til then-anything can cahnge.
just -feel really sick-
this SUCKS
btw--been keeping up on the mangosteen juice--i am glad to have started that and the fish oil.
i scheduled a bone density w my gyn for next year--that is unless i need it sooner.
anyway--that's the update so far
thanks for replies..
my dad is pushing me hard to eat. he is right --it is so hard though. even foods i LOVE-i can't touch. i ordered pizza-(i know)--but at least i may eat it--asl rice pudding-seems to agree with me--that and cracker/smooth pb--and tons of ensure.
...andrea