Honest answers, please?

Hey guys, how's it going? I'm hoping that you all can be honest with me here. I feel so dumb right now....

For those of you who don't know the history of my health, here's the thread where I last posted it. I don't want to bore you all with the details if you already know. :) Basically 2 years with CD, a rectovaginal fistula, c. diff. three times just this year, and acute pancreatitis caused most likely by Imuran, but it keeps flaring up with no known cause. I even had a feeding tube for three weeks last month to try to help it. I've had 14 hospitalizations now just this year since February, and a few more ER visits scattered in between.

History (in order from oldest to most recent):
Health history post on my blog
End of August thread on HW

Since that last thread, I've had to be admitted twice because of dehydration from vomiting and nausea. The second was this last weekend when my pancreas was hurting plus diarrhea that started bleeding. They sent me home yesterday with normal levels and eating solids, although I felt pretty weak and honestly like they were rushing me out a bit. This wasn't my best hospital stay.

So here's I guess where I'm feeling pathetic, or needy, or weak, or something, I don't know. It turned out that my lipase levels weren't too high on Friday/Saturday when I came in. They had me do fluids Sunday, and when that didn't raise them, they had me eat Monday and released me Monday afternoon.

But then Monday night I started having diarrhea - and it was bad. Starting about 9, I was rushing to the bathroom AT LEAST EVER 20-30 minutes until about 5a. And around midnight, there stopped being any stool at all and it was just yellow liquid. It looked like I was at the end of a colonoscopy prep when it's nothing but the yellow gatorade. Or urine. But that's all it was, and the urgency was so fast and so bad, that by the time I made it to the toilet it was going through my fistula and coming out through my vagina as well. Every 20-30 minutes for the rest of the night. Then about 5a I also threw up. I finally got about an hour or two of sleep, and then when I really woke up I was so nauseous. I forced myself to have a bowl of Rice Chex (milk doesn't bother me, thank goodness). I also had a couple of crackers and poptarts scattered throughout the day, along with a couple of glasses of water. I was really, really weak. More so than I've ever been, even with the feeding tube or salmonella or anything. I couldn't walk to the kitchen without collapsing and I stopped urinating.

I didn't call the doctor because I was only having the extreme nausea - the diarrhea had stopped and I wasn't actually throwing up. I took 40 mg of Pred instead of the 30 that they'd put me on at the hospital (I'd started the taper from 30 to 20 earlier in the week, but we weren't sure if that contributed to the diarrhea on Friday or not. I may have actually not taken it that day because I found a pill in the covers Sat morning and I'd taken them in bed that morning with the handful of others and I could have dropped it.) But then this evening (Tuesday evening) the diarrhea started up again, and I threw up three times in an hour.

This is where I just feel so dumb. We came here to the ER, they admitted me and gave me Phenergan for nausea and dilaudid for pain. I feel ok now, but that's with the meds in my system. All of my levels came back completely normal except for my white blood count is slightly elevated at 13, but since it was 22 this last weekend they're ok with it. The x-ray also came back normal.

Due to all of this, they're most likely sending me home since they've given me two liters of fluid. I just feel really so dumb. Should I have not even come in? All levels seem normal, so it's not my pancreas (even though it aches, I think it's always going to) and they say that there's not really anything they can do for me here. But today I just felt scared, for the first time ever since I was diagnosed. For the first time I felt like I couldn't take care of myself at home. Am I turning into this needy hypochondriac person? The admitting doctor here, who knows all my history since I've been here so often, isn't admitting me and wants me to just come to their clinic tomorrow. I don't have a GP/PCP yet because I've been to sick to actually make and keep an appointment with one, and they're clinic seems pretty good and can get me in. He said that it's not that he doesn't believe me, but with all levels normal they don't really see what they can do or anything.

So am I just being a wuss? Have I been sick so long that I just am taking every little change or difference way too far? Before I was always a "mind over matter" person. When I first got Crohn's symptoms, it took me a month over 20 bloody BMs/day before I broke down and went to the doctor, and that was because my mom practically forced me. Same with when I got salmonella, and then all the beginning this year with the c. diff. and abscess pain - that lasted two weeks before I went in to the ER. I've tried to listen to my body better and be more proactive, but have I swung too far the other way? Honest answers, please. I've tried asking the nurses and doctors here and I keep getting the answer to listen to my body, etc., but this weekend and tonight have just worn me down about it. I feel so dumb and pathetic.

No, you're not being stupid. You've been through a lot, it would be stupid to risk your health anymore, I would have defnitely went in if I were you. Can the ER send you home with pain meds and an antinausea? At least then you can try those at home first and see if it helps before going to the ER.

I feel that way too when I'm feeling well...like maybe I'm making a bigger deal out of it then it seems.  But don't!  It's your body and the one feeling like crap.  Three years ago I had the worse flare ever.  I was like you...couldn't keep water down, throwing up, lost 50lbs in 6 weeks.  I'd go to the ER and did all the testing and my levels and CT were "normal".  After two hospital stays in 1 month, my GI (This was the first meeting him since I had to stop seeing my other GI due to insurance changes) ordered a pysch consult telling me I was making myself sick.  Well gues what, still felt awful.  So back to the ER I went.  They admitted me again and my GI told me they were going to figure out if this was all in my head and ordered a colonoscopy.  After all was said and done he told my mom my colon was a mess and then ordered Remicade for me (which I was asking from the beginning since I wasn't on any maintenence drugs since the start of my flare.)  After a few weeks I was well enough to go back to work. 

What I'm getting too...tests don't always show what's really going on inside our intentines.  My inflammation levels were ok yet I was so inflamed that I now have lots of scar tissue.  Continue to be your own advocate and hope you feel better soon.

Sci,
You are so not a wuss. Seriously, just because an x-ray is negative doesn't mean you automatically do NOT have a partial obstruction causing all the nausea/vomiting. I went a year sitting on the toilet and vomiting into a bowl at the same time with negative x-rays. If things do not get better do not hesitate to take yourself back to the ER or at least into your GI.
I sincerely hope you turn the corner soon and start making progress.
lynn

Thanks everyone! I've really appreciated the support from this. I felt so dumb Tuesday night being there, but yesterday and today I've felt much stronger. It reaffirmed that I did the right thing in going in, even if all I needed was the fluids from being dehydrated.

They've sent me home with liquid Phenegran and under-the-tongue Zofran for nausea, and none of that helps. I've been struggling with nausea for a month now, since shortly after the feeding tube. We thought I was pregnant for a bit (boy, was that a stress!) but the pregnancy tests have been negative. I think it might be from the c. diff. combined with the dehydration - the ER doctor said that it's a cycle of vomiting and D can lead to dehydration, which makes you more nauseated and vomit more.

They had me follow up at their clinic on Wed since I didn't have a PCP/GP yet....I thought maybe since they're the docs at the hospital it would be good to have them, but it was the biggest waste of time. I haven't ever felt so frustrated with a doctor before. Basically they said that Crohn's is hard and bloody D is normal, and I just don't know how to deal with it yet. I went the entire year of 2011 with only one hospital visit, and that's because I got salmonella. Thank you very much.

Anyway, I have an appointment tomorrow with my GI, and then next week one with the PCP/GP that he really recommends (and is also his personal one as well, so you know he's got to be decent!). I'm thinking that maybe I should be doing Remicade every 6 weeks instead of every 8. I'm up for an 8 week dose next Thursday. I also put myself on 40 mg of prednisone this week after Tuesday night (I had tapered from 30 to 20 Tues morning), and that's slowed the frequency (down to 3-4 times/day) but it's still D.

As for pain meds at home, I think my body doesn't process them very well. Do any of you experience that? I've tried Dilaudid, Percocet, and several others but they don't even phase me. Oral Dilaudid does absolutely nothing - doesn't touch pain, doesn't even make me woozy or sleepy. I'm like that with all oral meds though. 20 mg of Ambien will barely make me drowsy. Nyquil makes me hyper, believe it or not.

Anyway, hoping the next week or so of appointments yields positive results! :) Thanks again everyone for being so supportive. I appreciated it a lot.