I've landed myself a spot at my local hospital - so know what ?

[Zeppy321]

I've landed myself a spot at my local hospital - so now what ?

I tried to tough it out most of the day Tuesday , I had severe pain , heartburn , vomiting and a high fever which the pucking and fever are not normal for me when I'm flaring so my hubby made me go. I've had xrays , CT scans and lots of blood test but no ones is telling me what is going on . The er doc said she thought I had a stricture. My Gi will not be here till tomorrow afternoon. So one GI that I saw today said it was a partial obstruction and another said it was just inflammation. They have me on IV fluids , IV cipro and Falgayl and 80 mg ? IV steroids. I feel confused and don't know what kinds of ?'s I should be asking. I was taking aza 150mgs daily .5x 3 xanax daily and 10 mg Ambein at night. I had just finished a taper of pred. on March 28th and started a 9mg entocort the next day I can't sleep I'm rambling scared and confused . I would love some advice Please ! Soon they'll pack me up and sending on my way with no plans in place to get this under control . I feel helpless. What results should i ask for ? Should I demained something other than aza ? I've been taking it for about 8 months and have ended up with3 hospital stays in those 8 months. I know I'm ranting and repeating and i am sorry . I am very fusturated and can't sleep ! Please help if you can ? Sorry I don't know anything anymore.:ymad:

 

[theOcean]

Oh no, Zeppy! I was wondering where you were.

I hope you manage to get a proper answer for what you have, soon. It sounds like either the doctors aren't communicating or that they still haven't figured out what's wrong. I think the most important questions to ask are if you have a stricture or obstruction, and what needs to be done about it.

It feels like you're having a lot thrown at you at once, and like it's getting pretty overwhelming. Is your husband at least with you to help you keep track of things?

Entocort usually has less side-effects than prednisone does, though it's possible it may have caused your sleep issue that you complained about. Some people get that with prednisone, instead.

I think it's probably a good idea to ask to be on a medication other than Aza. If you've been in the hospital three times in the last eight months, it's definitely a sign you need a stronger medication to help you. Chances are you might be told to go on a biologic, and if that's the case, I have experience with those, too!

I hope you feel better soon! :hug:

 

[Zeppy321]

Thanks for the support theOcean . Maybe I'll be thinking clearer tomorrow - I hope so . I'll let you know what they say . Thanks again . Zeppy aka Cheri

 

[theOcean]

Yes please! Hope to hear more from you soon, and that you'll be feeling a little less muddled then, too.

 

[Ihurt]

Is it possible you could have got that nasty stomach virus that is going around? I mean since you say these symptoms are not normal for you? I can see why you are aggravated, you have all these different doctors telling you different things. That is Not reassuring. I think once you talk to your own GI maybe you can find out what is going on. I hope they can figure this all out and get you feeling better....

I tried to tough it out most of the day Tuesday , I had severe pain , heartburn , vomiting and a high fever which the pucking and fever are not normal for me when I'm flaring so my hubby made me go. I've had xrays , CT scans and lots of blood test but no ones is telling me what is going on . The er doc said she thought I had a stricture. My Gi will not be here till tomorrow afternoon. So one GI that I saw today said it was a partial obstruction and another said it was just inflammation. They have me on IV fluids , IV cipro and Falgayl and 80 mg ? IV steroids. I feel confused and don't know what kinds of ?'s I should be asking. I was taking aza 150mgs daily .5x 3 xanax daily and 10 mg Ambein at night. I had just finished a taper of pred. on March 28th and started a 9mg entocort the next day I can't sleep I'm rambling scared and confused . I would love some advice Please ! Soon they'll pack me up and sending on my way with no plans in place to get this under control . I feel helpless. What results should i ask for ? Should I demained something other than aza ? I've been taking it for about 8 months and have ended up with3 hospital stays in those 8 months. I know I'm ranting and repeating and i am sorry . I am very fusturated and can't sleep ! Please help if you can ? Sorry I don't know anything anymore.:ymad:

 

[Zeppy321]

It seems that my GI will not see me till Monday. So I guess IV meds and rest until I speak with him and get a plan in place. I did not want to be in the hospital on Mothers Day . I will keep you guys posted when I know something . Thanks for being here for me .

 

[Ihurt]

I am so sorry. So all they are doing is giving you IV meds then? Couldn't they give you a script for some oral pain meds to take home and maybe you could just have them make arrangements to see your GI is his office Monday so you don't have to e stuck in the hospital for nothing. It does not seem like they are doing much for you anyhow..

 

[theOcean]

I'm sorry Weekends are always so unproductive at the hospitals, sadly.

Maybe some family could come visit you in the meantime?

 

[Daisy123]

Sorry you are having a rough time, but hospital is the right place for you at the moment. At least on Monday you will see your GI. Have they done a CT or MRI? I have strictures which only showed up on the CT. I know that you want to be at home but you need this sorted out.

 

[Zeppy321]

I am so sorry. So all they are doing is giving you IV meds then? Couldn't they give you a script for some oral pain meds to take home and maybe you could just have them make arrangements to see your GI is his office Monday so you don't have to e stuck in the hospital for nothing. It does not seem like they are doing much for you anyhow..

It's not the pain meds that they care about me getting through the IV - They are giving me 2mg dilaudid every 3 hrs IV and I have my regular script for percocets at home. I think they want me to stay here to get the cipro and Flagyl but mostly the steroids through the IV. I know they work faster when taken this way but I have taken all these meds in pill form before at home. I guess I just feel at this point I could be doing the same they are doing to myself from the comfort of my own home . I don't know if its just me but everytime I'm in the hospital I feel like they stick me in a far away room and forget about me after the first couple days. :tongue:

 

[Zeppy321]

I'm sorry Weekends are always so unproductive at the hospitals, sadly.

Maybe some family could come visit you in the meantime?

It is lonely and boring here. I know I should use this time to rest but now I'm restless. I think I may watch a movie and try and just relax. Thanks. :smile:

 

[Zeppy321]

Sorry you are having a rough time, but hospital is the right place for you at the moment. At least on Monday you will see your GI. Have they done a CT or MRI? I have strictures which only showed up on the CT. I know that you want to be at home but you need this sorted out.

They did an xray and ct scan when I was addmitted on Tuesday but I don't think anyone has officially read them.

 

[theOcean]

When I was on IV steroids, I felt that they actually helped me get out of my flare. I was already on prednisone at home, but I think they're also able to give a higher dose through IV as well. So maybe it'll help you out, too!

And yes, watching a movie sounds like a good idea. When I was in hospital last, my SO brought me a bunch of TV shows to watch and it was a really good way to spend the time.

 

[Daisy123]

You can have an obstruction if you have a stricture, so it may be that the Drs mean the same thing. I have 3 at the moment, very painful when food starts backing up. I know hospital sucks, but at least you are safe and your symptoms can be controlled much more effectively in hospital.

 

[theOcean]

Hope you had a good Mother's Day despite everything. :hug:

 

[Zeppy321]

Hope you had a good Mother's Day despite everything. :hug:

Aww Thank You theOcean . It wasn't to bad - although it was first year I wasn't able to be with all my kids on mothers day they still called and sent flowers. And I am starting to feel a lot better. :hug:

 

[theOcean]

Aw! I'm glad your kids got in contact with you and sent you things. And it makes me even happier to hear you're feeling a bit better. Now that the weekend is over you can hopefully see the doctors again, too.

 

[Zeppy321]

Hi all , I'm home now Still feeling kinda crappy though. I never even saw my own GI while I was in the hospital but at least I got an appointment with him on June 9th. So my meds for now are pretty much the same with the addition to 40mg of prednisone. My next step is Humira I guess but my bloodwork has been sent out for futher testing. Apparently I carry hep c antibodies but don't actually have hep c. Anyone else have this ? And does anyone know what problems having hep c antibodies and using Humira could cause ?

 

[theOcean]

Yayyy! :hug:

And I'm on Humira. The problem with starting an immunosuppressant or biologic and having hep c. is that I believe dormant illnesses may become active again and you have to be careful about that. They also check for having the TPMT gene, as well, which would make you prone to some really unpleasant things, so they try to make sure you don't have that and that you'll be safe if you're immunosuppressed.

 

[Zeppy321]

Thank you theOcean ! I will keep you posted on the Humira when I find out more from my GI. Thanks for your support.

 

[theOcean]

It's no problem! I'm so thrilled to hear you're home, and hope you're enjoying being back too.

If you have any questions about Humira I'll be happy to answer them, as well!

 

[Zeppy321]

It's no problem! I'm so thrilled to hear you're home, and hope you're enjoying being back too.

If you have any questions about Humira I'll be happy to answer them, as well!

Thanks so much . I probably will have lots of questions . I'm glad I'll have someone to ask. :hug: