Should I ask for IV Steroids?

[suschex]

I was just diagnosed 2 weeks ago with CD. I left the hospital the day of the colonoscopy. When I woke my husband told me that I had Crohn's and the doc was putting me on steroids but that I wass free to leave the hospital that day if I wanted to. I did...two young kids and husband had to work the next day. Anyway, fast forward two weeks (this this past Monday) when I saw the doc for the first time. He told me he would have prefered me have stayed in the hospital for a course of IV Steroids since the CD was so extensive/severe and had gone untreated for so long but that he had left the decision to me about stating in the hospital or going home and doing oral steroids. i gues there was a mix up with the communications with my husband or something...doesn't matter now. However, I am now 16 days on 40mg Pred. and not any better...plus I have started hurting a lot even with Tramadol and Zofran for nausea. I am so weak and hurt and exhausted. If I had known that the doc wanted me to stay in the hospital I would have in a heartbeat...it just wasn't explained to me that way by my husband and when I came around after the colonoscopy the doc was already gone for the day.

Does there ever come a time that you ask to be put back in the hospital for the IV Steroids you should have had in the first place? Do I just wait it out until my next appointment in two weeks and see how it is then? I feel so helpless and hurt so much.

 

[Ian]

If that's the course of treatment he'd have followed then I don't see any reason why you shouldn't ask for it - sometimes when a flare is too far gone, oral Pred can't touch it because our ability to absorb it through the gut is too compramised. IV steroids obviosuly bypass that issue (plus I believe the doses are higher) so it can/should work much more effectively. Don't suffer for 2 more weeks if it's that bad, get some help .

 

[MADiMarc]

I 100% agree with Ian. Please get the help you need ASAP.

 

[suschex]

I spoke with the doctor and found out that after all the testing results were in it showed that the CD was too severe to work with just oral or IV steroids so that is why he went forward with the lab work to start me on Humira or 6-MP and he will as soon as the labs are back and all is clear. I think I am just not getting my mind around the whole "I have sever CD" thing. I guess that because it went untreated for 20+ years and that this current flare has been going on undiagnosed for almost 12 months it is too extensive. I'm just grasping at trying to understand what CD is, how to know how bad one's CD is, how to decide what meds to go with, etc. I mean the meds he is talking about scare me to death! Not much time to let all this sink in......

 

[DustyKat]

Oh okay, I can't say I've ever heard that someone's CD is too severe for IV Hydrocortisone...I would have thought that is the very reason you go that way, hit it hard and fast and then allow the other meds to take over. If you go to 6mp it is not going to work in a hurry, Humira may well be a different story though.

I still think a hit of IV Hydrocortisone, 5 days is pretty standard, while you are still on the Pred is worth a go and some IV Flagyl then oral while they are at it as well.

Dusty. xxx

 

[suschex]

I feel so very confused at this point. I know that I must not be taking in all the info the doctor is giving me because it is just so overwhelming. Now, as I think back I am not sure if he was telling me to look into 6-MP and Humira so I could decide which I wanted or if he was just letting me know that my course of treatment is to go onto both. I feel so very, very lost, alone and confused and have no idea how to go about any of this. When the doctor is talking to me (he spent almost an hour with me at the first post-diagnosis appointment) I feel like I am taking it all in and grasping all that he is telling me but then later I feel confused and when my husband or family ask me questions I just don't know the answers.

Sorry to just vent but I feel so lost...

 

[DustyKat]

Oh hun it's okay to feel that way, there's no need to apologise for it...:hug:

I think the best thing to do is in future when you go and see the doctor take someone with you if that is at all possible. It is confusing and it is too much to take in on your own, it is for most people so you aren't alone there.

Ring the surgery and explain to them that it was a tad overwhelming when you saw the doctor and could they please email you a copy of the doctors suggestions and instructions.

:hang: hun, you are doing just fine.

Dusty. xxx

 

[suschex]

DustyKat - Thank you so much for the kindness. Your children are so lucky to have you!!! That is a great idea about getting a copy of the doctors suggestions and instructions. I will do that as soon as they open!

 

[Gwen pippy]

I'm hearing ya honey,
There can be a lot to take in and when you're not at your best it can be even harder. I agree with everyone here, contact your doc, see if there is an IBD nurse who can explain things. I agree that it is unusual for them to bypass IV steroids if its severe and yes 5 days is a standard. If he is reluctant to go the IV steroids route and oral pred is not helping, ask for some steroid enema's, I know it can be a little daunting to give yourself a enema but believe me, you will get the hang of it in no time and it will help to reduce some of that inflammation and in turn give the other meds a chance to work.
As dusty said if there is someone you can bring along as an extra pair of ears then it will be a big help, till you understand all the terms these guys use.
I suggest writing a list of questions also and bring that along, then you won't leave and say I should have asked this or I forgot to mention that. I still bring my list of questions even after 25 years.
Good luck honey, thinking of you.
Gwen xxx