C Diff. In severe pain in hospital. Not getting relief.

i'm so sorry to hear it, in this disease there are always ups and downs so i hope everything will be ok soon. I've read that there are new antibiotics which have been recently introduced for cdiff to replace the old vanco. i see you are vegan so maybe i shouldn't say it (as an animal rights activist, i strongly support vegetarianism and veganism), but with uc, i personally wouldn't survive on such a diet. I think it's possible that the things you eat might cause additional irritation to your colon resulting in pain

Sara14 said...
I am in so much pain. The hospital is only giving me dilaudid IV pain med every 4 hours. It only works for about 1 hour right now. They are acting like Im a druggie. This is the worst pain i have ever been in. :(

Yikes, sorry to hear things haven't improved yet. I'd keep after them as pain should be something a hospital is equipped to handle while you wait for your antibiotics to kill back the c diff.

what mg of dilaudid are they giving you? They usually either give you 1 or 2mg. I've had dilaudid and oral percocet at the same time which worked well.

omg Sara...I am so sorry to hear this. I hope that they are aggressively treating the C-diff----there is no excuse for them to not be managing your pain. Is there a hospital advocate that you can speak with? Not acceptable at all!
B

Thanks guys. They also just took an xray of my abdomen but i dont know why. Good to know on the timetable Keith. Now they are giving me pain pills AND dilaudid so that is better..i still have pain though.

They dont work for me. He has given me bentyl in the hospital though and I have hyosyamine and donnatel at home.

Maybe I should have taken the pred since I feel so much worse today. Thoughts? OH, and I found out it's a low dose of dilaudid...1 mg.

How did you find out it hemmorrhaged? Did you need surgery? Thank you!

I told them my pain was a 9 on a scale of 1 to 10. I barely get to talk to actual doctors...it is mostly nurses. I feel like they are treating me like a drug seeker and that is the furthest thing from the truth. So should I be in some pain or not? I dont know what is normal. A nurse manager lady came in yesterday and asked me what my "pain goal" was...?! I was like well obviously I want to be pain-free.....

That is correct. One nurse told me she would bring me in a warm blanket to help with the pain!!!! And she says she has Crohn's! They all keep trying to push bentyl on me too which does nothing for me.

I'm so sorry you are suffering. I've been in your shoes with cdiff and inadequate pain control. I was at a level 1 trauma center but being managed by hospitalists/residents who initially told me I could have tylenol. I had to text my GI doc and get him involved. After that, the team was good about asking how my pain control was. Another post mentioned a patient liason from the hospital. There may be a "condition help" or something equivalent when the patient feels their care isn't appropriate. I had to be very descriptive to get my point across. They kept trying to offer me butt cream so I finally told them my rectum was on fire and it felt like someone's fist was in my rectum. They didn't seem to understand the pain was inside. I know you probably feel like poo but keep advocating for yourself and firmly request that you see the physicians that are writing your orders. They work for you. You are the client/customer.

I was released from the hospital on Sunday evening. My diarrhea had stopped and my cramping had also mostly subsided. I was still dealing with severe abdominal pain but they sent me home with some pain meds. I improved over the next two days and even had a super normal, formed stool that looked better than anything I have seen since pre-UC days. My pain had subsided to the point I was off pain pills for a day. And then my symptoms came back! I'm having diarrhea and crampy feeling like I have to go to the bathroom every 30 minutes or so. I called the gastroenterologist on call at the hospital because my doctors office is closed today and they want to try me on another antibiotic (dificid), but my pharmacy said it will cost $1,000 AFTER insurance! I can't afford that. I'm kind of freaking out at the moment. There really aren't a lot of other options for me. The doctor is checking to see if they have any samples of dificid, but he didn't think they did.

Any advice on how to not lose anymore weight? I was down to 107 pounds in the hospital. My normal is 112 pounds and I'm normally on the thin side. I've lost all the muscle I once had.

Don't ever be on antibiotics for weeks! C diff is a nightmare far worse than UC even!