In hospital 2 days, no treatment! At my limit!!

Marathon 5: Toronto. I'm calling the patient advocate

Hi rbartolo,

I'm not that far from you as well.

Good for you for calling patient advocate. At the very least they may get you some answers to questions you have. At times I think we're lost in the shuffle in these busy hospitals. From my experiences sometimes a visit is worthwhile, others is horrible. Luck of the draw type thing again.

I think you have a better chance of ivig at the hospital if you can make your case to them and the GI go's for it.

It sounds to me like its actually more of a case where they're trying to rule out a few things first really seeing as you're in isolation - hence the delay in treatment plan. Did you get you C-diff test etc? It can take 48 hours + for some of the stool culture tests to come back and they won't want you taking anything until then.

I know nothing about Toronto or Canadian healthcare, but I have to ask... are you at the best hospital for IBD in Toronto? Could you sign yourself out AMA and go there, or request a transfer?

I was denied pain meds when I was hospitalized because of the risk of toxic megacolon, but denying you Tylenol is... beyond the pale to me.

Some of the other cultures take time though. Just really sounds like they are still approaching it as an infectious disease thing not IBD, specially with the nausea... rather than just bad/poor treatment. Seems very strange for it to be so long as I think you;re approaching day 3. Such a frustrating position to be in regardless.

Have you asked the nurse if they are still waiting on tests results or if they are simply waiting for doctor to get a chance to review? - Like asked very clearly.

Hang in there and keep us posted... so sorry you're still feeling so rough but on the bright side if you hang in there tomorrow you'll get some answers.

Same here... Do let us know. Hope you managed to get some answers.

you should mention your concerns re. side effects before the infusion, definitely. Do you know of anything planned for after that, if you're still so sick? I was never much of a vomiter, it doesn't sound like your "classic" UC flare. Is there blood, mucous, etc? Any actual stool? No mention of cyclosporine? I truly feel for you, rbartolo- what an awful thing to deal with! What did the GI say, in terms of longer term remedies? And any idea when you can go home???? It seems amazing that they can't stop the vomiting & diarrhea...

Eva- hard for me to believe that 1 ivig infusion is all it will take. I still have not seen my own GI!! Only the resident who said my case is complex. No long term plan...not really a short term plan either given that I was already scheduled for my monthly ivig tomorrow!! I'm still not on any Meds except for gravol. Troubles with my veins /ivs & I'm shivering because they have the AC on! Every time I go to the bathroom I cry. I want to give up.

Marathon- sig said deep ulcerations but with all the vomiting it doesn't seem like it's solely UC. If I transfer to another hospital I loose my ivig. But I agree no communication, I'm alone, no answers or possible solutions. Ivig is the only thing I have, for now. But again I don't think 1 infusion is enough. I used to be on 3.

Thank you Chant. I really appreciate the support. I really have lost hope. I don't care to fight anymore.
I'm so worried because I can't stop vomiting. My garbage is literally filled. I poop & vomit at the same time. I believe too sick to handle ivig. No food for 8 days & little sleep. I'm so done.

rbartolo, i'm so sorry you are so miserable. vomitting has been a major problem with my UC, too. throwing up and pooping at the same time while yelling/crying from the toilet seat for more zofran. just sucks. i have gastritis from the UC and even smelling something bad causes me to barf.

i haven't read this whole thread but have you been on biologics or just IVIG? obviously the IVIG isn't working and you need another med. what do you want to try?

I'm sorry, I have no advice to offer. I just wanted to post a quick note to let you know I've been checking in on this thread and am thinking of you. I'm hoping that you get some relief soon.

I was like that too. I'm sorry you're flaring so badly. The best you can do is, try to research your simples online and give advice to the doctors. Because sometimes they suck. I had to do that with one of the hospitals. You need some relief. Ask them to at least give you something to stop the vomiting because you'll be on fluids for a while otherwise.

What about family? Since you can post on here can't you text or call them and ask if they can get you some answers/speak to the doctor?

Praying for you lady, may you have relief very soon!