today's appointment

I feel like I have that problem with prednisone too. When I used to take it in the afternoon, I think it was a better situation for me. I have been taking it at 7/8am now and I find that the mornings are worse than ever. By the time the evenings come, I am starting to feel bloated and constipated. By the time I wake up in the morning, it has built up. I think I'm going to go back to take it at 3pm.

Oh my gosh, night 2 of 6 hours of sleep before waking! And I could have probably gone at least another hour without having to go, but I needed to pee. This is awesome!

That is incredible! I hope things are slowing down so you can get back to normal! Maybe your body just needs time to adjust.

I am so sorry to hear you're not doing well Pam. I will be thinking about you. I don't understand what is going on. How can you still have this bleeding when you don't have a colon? Could this be from the small intestine or father up? I don't know anything about this but couldn't they do an endoscopy to see where the bleeding is coming from? I saddens me that you've had so many problems. You deserve a healthy future with your family, I hope things turn around quickly.

OMG....this is so scary to hear what you're going through....Your situation is our worst fears.

I do hope that while you're in the hospital they can figure out what the heck is going on....are you one in a million? or is it that there's more going on and they're just assuming it's only from your surgery?

Pam....my heart breaks for you and all this crap....at first I thought the blood pressure stuff might be from the unisom....did you mention this to the docs?

Thank you for keeping us updated...so many of us are truly wanting to know how you're doing.

quincy

Pam, I so feel for you. I too have had/have j-pouch problems. Why are you on IV's TPN and saline? That must be a nightmare.

Susan

and I am so frustrated with these nurses and doctors not knowing what the heck they are talking about. I ask if they know what a j-pouch is and they say yes then they continue to ask me how much of my colon is left and seem to find it unbelievable that it's all gone. Then they ask me how much of my small intestine was taken out and I say "just an inch or so during the connection. i didn't really lose any" and they find that weird, too. Then they ask where my "colostomy" bag is. Then they ask why I don't have normal stool and go frequently. Then one said "so you had a gastric bypass and part of your colon out?" Where do they come up with these things? Are they not educated at all? This is not a new surgery, nor unheard of. I know several people who say "oh yeah, my friend/brother/coworker, etc. had that done"

Then the ER doctor and 2 nurses insisted that I had a small bowel resection on May 24th. Ummm...no. I haven't been in the hospital since the end of April/beginning of May except to have my central line replaced. They insist the records say so and I must be forgetting?! Yeah, I would forget about a surgery that apparently happened 2 weeks ago...right

And they have not given me any Lomotil since being here, even though I take it by prescription every 6 hours at home. I don't know why they didn't or won't order it. I hate when they change my meds and don't tell me. They put me on a high dose of a steroid last night and I asked what the equivalent would be in oral form since I"m only on 5mg of Pred. and they said it would be way higher than that and I would need to taper. Then today they said they are just switching me back to 5mg oral pred...ok
Oh nevermind, they came in and changed that again to 50mg hydrocrtisone. I asked if I would have to taper from that and whether I was supposed to stop the prednisone at home and she said "this has nothing to do with what you take at home and you might need to be on a maintenance dose of this". I don't even know

Oh my gawd... >.<

I would speak with a social worker and see if they can transfer you to either the Cleveland Clinic or a NYC hosptial-Mt Saini or Cornell. I'm sure these big hosptials take your insurance. I had to do that at one point as well.
Susan

Haha, Christine. I do watch that show and sometimes think I should be on it :D

I want to write to Ellen or something. Not really, but she gives single mothers cars and stuff all the time. She can help me, too :D


The GI doctors here do seem to be taking things a little more seriously. One just came in to see me and they are doing a more thorough scope of the small intestine tomorrow. I had an upper scope done before and a lower scope but not more than into the pouch, I think and not higher into the middle of the small intestine. He's concerned about Crohn's. Everything has always pointed to UC more but it's so unreliable and hard to tell. Then he asked if they were considering just an ileostomy and taking out the pouch. I do not want this. I had SO many problems with the ostomy....way too much output, incredible skin troubles, hard to keep bagged, and now that I've lost 80 pounds, my surgeon had said I would likely need plastic surgery in order to get a good bag fit
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Haha, my surgeon just called me. He can't see me at this hospital and when I told him I am getting a scope done tomorrow, he said I must get the nurse to write a note on the front of my chart with his cellphone number and they are not to do any type of lower scope on me without calling him first because he is very concerned with scopes being done correctly with the pouch so they do not damage it in any way or cause any issues with fistulas or anything. he always uses a pediatric flexible scope on me and wants to give them detailed instructions. He really is so caring and concerned so that is nice. He just doesn't know how to treat these other issues

Oh, it's my surgeon that's good. My GI is not so awesome. He's just ok

Well, I will be staying here because these doctors are running more tests than they have in the countless admissions I've had in the other hospital. However, I wouldn't have an issue delaying the scope if my surgeon doesn't feel comfortable with them doing it after he talks to them and just waiting until I get out and then seeing him for it.