I Freaking Hurt!!!!

[lizzablizza]

I hurt so, so bad right now. I'm not trying to whine, but no one around me understands what hell I'm experiencing. I called my mother up sobbing today begging for any pain medicine she might have because I was curled up in a ball and unable to move. I was crying so bad she couldn't understand me. If I thought this was just for one day, or even a week, month or year, I could handle it. But for life?

 

[MINI Cooper]

I know. It sucks. But hopefully you will be able to get into remission
and stay there for a long time. People can be in remission for years. My doctor
even had patients with Crohn's who have been in the Olympics. Although
I'm still in a flare myself, I'm not giving up hope that I will still be able to do
the things I want to do in my life. Of course what we all really want is a
bloody cure! :voodoo: Hang in there!

 

[lizzablizza]

Thanks for the encouragement. I'm trying to be proactive right now and typing up an insanely detailed list of questions for my doctor's appointment tomorrow.

 

[Guest]

aw so sorry to read how bad you're suffering just now Lizza welcome to our forum anyway, i hope things turn around for you soon - and feel free to moan here whenever you need, now that you've found us. hopefully you can tell us some hopeful news too, once you've seen the doctor.

 

[My Butt Hurts]

Don't try not to whine. If it helps - do it. And that is what we are here for! Whine away, we can take it.
Let us know how you make out at your appointment today! Good luck!!

 

[dollamasgetcrohns?]

Ask your Dr. to do a complete blood test incuding your Liver Enzymes, Pancrease ) Lipase and Amalyse) and for Celiac Sprue. That is what the nurse whispered tome when i was in so much pain she said that he shouldhave tested me for all that, and some. I was positive for several things . Retest again and insist on a genetic test for Celiac if the ttg test is negative. Sometimes it is even though you may have it. Many Drs do not know how to read these tests ( if you have HLADQ2 or DQ8 ) then you might have Celiac , other seriose pain can be Pancreatitis. And so much more. Hang in there and keep the list , I think that they do not like lists but when you are in so much pain you might forget things. All the best.

 

[Sparky]

Poor you, it's awful when you're in that much pain, it sort of takes over and you can't think about anything else If you can manage it, try not to focus on the 'it's for life' thing too much - look at today, don't look any further ahead (easier said than done I know!).
I can remember doing exactly what you described, curling up (as much as I could curl at that time ) crying my heart out. I felt like I was drowning in pain.
That was 5 years ago - I still have bad pain days, but they're not all the time, and I get enough good days in between to make them bearable, iyswim.
There are lots of pain management techniques around - some work for me, some don't. None of them take it away completely, but they make it easier to cope with.

Good luck at the doctors today, let us know how you get on!

 

[lizzablizza]

Update

Well, I went to the doctor, and he wasn't pleased with my list as expected. When I started crying (because I'm so good at being a grown up), he said I could read my list, but by then I was too flustered. Anyway, he says my Crohn's isn't "actively attacking" my colon at the moment, per CT scan results. He says my colon is just spasming. My response - whatever. Fix it!!! I had planned to ask for tests for celiac disease, but got emotional to be direct. First, he said that I was told incorrectly how to take my medicine. I've been waiting 'til the pain starts and then trying to get the meds to fix it, which he said won't work (but it was his office that told me to do it that way). Now, I'm taking my meds 'round the clock as a preventative. I'm also not allowed to have caffeine anymore. I check in with him by phone on Monday, and then as needed depending on what works. The tummy is at a quiet rumble for the last two days, so maybe it's helping. I go back in three weeks, and he says he's confident I'll be fine by then. I'll also be asking for a celiac test this time!

Thanks to all of you guys for your support and being funny!

Liz

 

[MINI Cooper]

It's hard not to get emotional- don't feel bad. I often find myself tearing up
and getting flustered when no one is listening to me. Just stick to your guns
and get those tests done. I hope they figure out what is going on for you!
Keep us posted! ::hugs::

 

[drew_wymore]

Definitely don't worry about getting emotional. I dropped a few F bombs on my doctor a few months ago I was so frustrated. It's been said before here but doesn't hurt to repeat. Doctors are our employees and if they aren't doing what you want them to do then you need to fire them.

 

[kello82]

aw lizza i really feel for you right now

im going through similar stuff. the pain is just so bad sometimes and you really cant do anything but cry. thats an automatic sign for me, as i rarely cry becasue of my pain level. im more of a frusteration induced cryer lol.
and yes it is so hard to assert yourself when youre feeling so broken down. i have had my parents do most of the corresponding to my doctors lately becasue i just cant get my thoughts out and speak directly. i have cried in many a doctors office as well. lol today was one actually, everyone in the waiting room was staring bah! looking back on it i just chuckle though.

i hope that your new medication schedule helps you. you deserve some relief. keep us updated!