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Day 6 hospital update

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Ulcerative Colitis
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Posted 4/14/2014 5:06 PM (GMT 0)
Thanks for asking. OMG. I have the PICC line but apparently ivig not approved, neither is another kind of maintenance drug. Can u believe this???

Morphine. Can eat solids but I don't want too. Rectum hurts too much. Going about 17-20 times a day. Sleeping on & off.
Posted 4/14/2014 6:40 PM (GMT 0)
What maintenance drug are you approved for? And sorry if you posted this already, but have you been diagnosed with Ulerative coltis, pancolitis, proctitis or some something else?
Posted 4/14/2014 6:46 PM (GMT 0)
No, I cannot believe any of what you have been through!

I had morphine after my hyster and absolutely loved it! I hate pain meds, my husband said I was quite happy with my morphine button I pushed myself!
Posted 4/14/2014 8:33 PM (GMT 0)
Update: still here, still poopin'! Although nothing much coming out. Feels more like I need to go but then nothinguch happened.

Just saw MY GI! Only took a week. Grrr. Plan is ivig today & wed. Any other maintenance drug won't work for this severity. Entocort is for right sided colitis & my inflammation on the left.

As far as long term, since Remicade caused my PG it is likely that other tnf's will. I asked about the new "V" drug ....won't be approved in Canada until next year. BUT he's going to apply for it now so I may get it under special circumstances if needed.

I'm relieved. I'm hoping the 3 infusions are enough to get me stable to get outta here & begin living again.

Very tired & weak. Think I've lost over 10lbs.

Thanks everyone for being there for me, especially last Thurs when I thought I was going to die of this disease.
Posted 4/15/2014 1:17 AM (GMT 0)
Have you considered surgery? I'm only asking because the severity of your UC is remaniscent of mine. (I was your age when I had my j pouch surgery)

Sounds like you are doing much better....hoping it continues and you feel well again soon.
Posted 4/15/2014 2:14 AM (GMT 0)
Hang in there, better days ahead :-)
Posted 4/17/2014 2:43 AM (GMT 0)
Hope you had your IVIG today and that you are getting better.
Posted 4/17/2014 10:36 AM (GMT 0)
Thanks for thinking of meCT:

Update: still here. I've had 2 ivig gone from 40 poops to 8! Yesterday even had 2 solid poops!!!! The rest is mush. However I was supposed to have my 3rd dose yesterday then discharge today. That didn't happen. Hematology & blood bank have stopped it. So I wait to see what will happen today:(
Posted 4/17/2014 3:16 PM (GMT 0)
Oh wow, what a change. I hope it continues.

What do you mean that the Hematology and blood bank stopped it...you mean the 3rd dose of IVIg?

q
Posted 4/17/2014 3:48 PM (GMT 0)
Yes Quincy. They've stopped the 3rd dose of ivig. I'm in limbo.
Started a bit of Vsl last night. Lots of bowel sounds & gas. Afraid to move/eat.

Anyone know when urecis(sp) available in Canada?
Posted 4/20/2014 3:56 AM (GMT 0)
Just wanted to see how you're making out. Are you still in the hospital? Are you eating properly yet?

Hope you're feeling a bit better.
Posted 4/20/2014 4:46 PM (GMT 0)
Yes I was wondering how you are doing too!
Posted 4/21/2014 1:31 AM (GMT 0)
Hope things have kept on improving.
Posted 4/21/2014 4:07 AM (GMT 0)
Checking in on you too. Sounds like you're improving a bit. I hope you got your 3rd IVIG and you're going home soon.
Posted 4/21/2014 6:01 PM (GMT 0)

Canada mark can I ask where/brand you get non sweetened protein powder??? thnxs

 

Canada Mark said...
It's really not that big of a deal. I do probably make the same/similar drive for work on occasion during the week. So if you change your mind or cave in due to the hospital broth let jut let me know and we'll figure something out.

I did have a thought - this never took away the pain, but sort of kept me alive and functioning during the most intense of times. The liquid diet can give your system or intestines a bit of a rest, so I used to have chicken broth, or even just chicken and carrot soup, but I would also have either orange juice or grape juice with a scoop of unflavoured non-sweetened protein powder. The combo of these took away that ummm stomach pain or hunger pain you might have and built some strength.

Anyway - as mentioned just let me know if you change your mind.

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