The last few days suck

[furiousrose]

the last few days suck

almost immediately after taking the pentasa i started to feel pretty great, and then 2 days ago everything went to hell.
i just had 15 viles of blood taken this morning, and spent 2.5 hrs at a hospital that is so big and set up so silly that i get anxiety the minute i get into it.
I had to stop on my way home to use the bathroom at my work(where i work when i am not off on sick leave) and started bleeding pretty heavily... and I dont drive, i had to get off the bus to do this.
i got home and fell asleep for about an hour, i feel like i could sleep for a week, but i have the big unveiling of my business on sunday, and am not ready for it... so much work to do. plus all my volunteer cancer society work is building up and staring at me.
I didnt even want to do the stupid blood tests, they always say everything is PERFECT... one day my leg was so swollen, and the tests showed no inflammation in my body, when me and the doc are right there looking at the swelling. My iron levels change weekly... so sometimes they are worried, and sometimes they say.. i just feel like you should be more anemic
sorry.. i should probably put this in rants.. cause thats what its become
I am done now, i need to get out of bed, and get work done.. i just really dont want to

 

[Guest]

aw Rose, so sorry to read this

are you prone to bleeding? i mean, was this a symptom you ever had before you started on Pentasa? it's just that i can't use Pentasa or Asacol for that reason.. it makes me bleed quite alarmingly, and after looking into rare side effects, it is documented that in some patients it can have this effect.

 

[furiousrose]

it is one of my main symptoms.. the reason i started to actually go to the doctor about not feeling well. I have always held a strong belief that going to the doctors gets you no where... i can tell myself that i dont know whats going on.
my mom gets called in on a regular basis to sit her down and tell her that theres a chance she might have TB... she has TB, has had it for years, its unresponsive to treatment.. if someone would just flip back in her chart they could save her and the fam a lot of worry and stress when they call home and say theres an emergency, she has to come in right away... everytime we think the TB has gone active, and everytime its to tell her she may have come into contact with it.
With me I dont blame the doctors to much... i dont know what to think either, and I have been passed from so many hands, and have had them admit twice now that my tests were done incorrectly, I almost admire that they fess up to it, instead of hiding behind their self appointed superiority.
i am just getting stressed that i have no symptom relief, and no answers, and no idea what to do or who to turn to when i cant get out of bed.
I did make it to the shower, and made some business related calls while i was still in bed... but now i am beat again. I would go back to sleep, but my business partner is pissed at me, and has zero understanding.. when it does come out that i just really dont feel well today, it becomes poor her for going into business with me. I believe in the business so much, i believe its my chance to better my life... but a huge part of me just wants to pack up and go home to mom, where i can stay in bed when i need to, and have real support behind me. and I dont feel like I am taking others down with me.
man... so not about the pity party!

 

[Guest]

i hear you - and it's not pity, it is frustration that we have these obvious symptoms yet help doesn't seem to be out there, no matter which way we turn to find it, nor how loudly we shout for it. i know exactly how you feel!

i guess you've done the changing doctor thing.. maybe completely changing to a different hospital might be something to consider, even if it means travelling further.

your business partner is probably having difficulty taking on board exactly how bad Crohns can make you feel, and unfortunately that's a normal reaction in some people who've been blessed with good health. you'll find many people on here who've gradually had to put up a shield against this kind of non-understanding. maybe just sit her down one evening over a coffee, and calmly explain as best you can exactly how you feel physically, and emotionally. if she's a good friend, hopefully she'll begin to see why you can't function how you'd like to on a daily basis.

 

[furiousrose]

man, i am in love with this place... i talked to mom today, and she said it sounds like your period... it feels nothing like a period, and i am not due for one for awhile now...
I have finally been passed onto the specialist for van island... as of right now I am in love with him.. and i have only heard great things about him. apparently his colleges hate him, and all his patients love him, cause he puts us first
but until i get some test results i have nothing... and i am not suppose to see him again till the 26th.
I am use to feeling this way, this is not anything new, and i dont feel like i am in an emergency situation, I just dont understand the point of taking 8 pills a day to feel exactly the same. I had all this belief that these pills would be like magic or something, and my life would change, and I could be a normal person too... hmph
I just want to go to sleep without feeling like i am neglecting my work, or that i am being lazy.
Sometimes I wish they would just hospitalize me for a week, so I could get some guilt free rest, i would welcome it.

 

[BWS1982]

if you had what seemed like great results from the Pentasa, and then a few bad days, don't detract from the notion that the Pentasa can help you again/still. A rough patch doesn't mean you're on a road to hell, it could just be a bad spot in your journey. sounds like it could have been something you ate or some other environmental variable. These pills and infusions can make us stronger, and give us a fighting chance against this demonic inhabitant of a disease, but we are/were never invincible, even before we got the disease, as we all can attest to, obviously.

 

[furiousrose]

I like to believe I am invincible.. thats probably why I turn to anger before anything else
I got SO much work done lastnight... I was in a lot of pain but i just got in a comfy position, with a heating pad, and started making miniture chairs, and painting picture frames.. getting the booth ready. I have recruited some friends for first thing this morning, they should be here soon..
and! I woke up pain free this morning... even if it decides to come back and haunt me in a few hours, I am about to take full advantage of feeling good right now
I am going to keep taking the pentasa... I don't want to blame it, but I am a little afraid of it right now.
<3

 

[mommy1st]

I'm glad you're feeling better right now, my crohns always acts up when I'm stressed out and it sounds like you have alot going on right now. Maybe because you got so much done last night some of your stress is gone. Good luck with your business and with the Pentasa.

 

[daisy_dueller]

Hey!! Which specialist are you going to?? I'm on Van Island as well!! Island buddies! lol.

 

[furiousrose]

yay island buddie!
I am seeing Dr.Winkler out of Nanaimo.. apparantly he is an awesome man to have on your side.
I think if I keep believing he is the one for me, then he will end up being that
thank you everyone for being great.
I got my letter today for my Nuclear Medicine white blood cell count.. has anyone had this done before?
Winkler said its easy.. besides being there a 1/2hour early, and staying for 7hrs.. there is no prep involved