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Just an update- Still in the hospital

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Ulcerative Colitis
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Posted 3/3/2010 5:33 AM (GMT 0)
So i've been in the hospital for 10 days now but I'm doing soooo much better! I'm eating real food and it stays in there like it's supposed to and I don't walk all hunched over in pain anymore and I don't look like walking death anymore either! =]

Basically here's what's happened. They started me on Dilaudin for the pain my first day here. They slowly tried to switch me over to Narco, i think i spelled that right. It's like a kind of vicodin or something. It really wasn't working too good though so today they started me on Percocet and it works great. They also started me on Bentyl for cramping. At first the 10mg felt pretty good but I'm noticing that throughout the day I could use a little more. I'll probably ask tomorrow if they can up the dose. But it still feels so nice to not have excruciating cramping all day long. =D Also my H. Pylori infection is basically gone. I finished a round of antibiotics for it. They also had me on TPN which made a big difference. I had so much more energy and color after just getting it for one day. Some blood work I had done after being admitted showed that my hemoglobin was low or something and that there was some inbalance in my pancreas. They told me I have pancreatitis and started me on iron pills 2x a day for the hemoglobin. I don't really think there's anything they could do about the pancreatitis though other than pain medication. I think they said that the TPN could cause me to have problems with that so they changed around the "recipe" a little so now my levels are improving. They also upped my level of prednisone to 60mg a day through the IV which has worked out well. When I took it orally I got horrible headaches and could only stand to take 20mg a day but I feel fine when I get it through the IV. They're gonna try to give me the Prednisone orally tomorrow though so hopefully it goes well. They also started me back on the rowasa enemas 2x a day. And started me on Nexium for my difficulty swallowing and keeping foods down if I burp or eat too fast. They've also given me zofran most days that I've been here but I'm not sure if I'll need to be on that when I leave. Hmm... well I know that I'm on some other stuff too but I can't but sure. My normal body weight is around 125 and at one point I was down to 110. I'm back up to about 114 right now. I'm still pretty weak and I get pretty tired walking around or getting up to use the bathroom but I've been taking walks up and down the hall everyday and I can see improvement. So basically I'm super happy. I only wish that I would have known more about what's normal and what's not because I should have been in the hospital a long time ago. But now I know what to look for and hopefully I never get this sick again. So anyway they're saying that if taking the prednisone orally tomorrow goes well and if I can eat just a little more every day then I can go home on thursday! Ohh I forgot. They decided to put off doing another colonoscopy until I'm not on so much pain medication so that what they're going to give me during the procedure actually works unlike last time. They also decided to just completely knock me out too instead of just heavily sedating me. Sooo anyway, that's all. Sorry this was so long but remember what everything is called, I just know that I take a whole lot of pills everyday lol. But anyway I'm putting on weight slow I thought I'd keep you guys in the loop. Everyone has been so helpful and understanding. =] Thanks everyone.

Posted 3/3/2010 5:43 AM (GMT 0)
Great to hear from you and that you are feeling a little stronger!
It will take time to heal now so dont rush getting out of hospital - take things steady and concentrate on rest.
Posted 3/3/2010 6:27 AM (GMT 0)
Holy crap, you've been through hell and back for sure!

Makes sense they put off the c-scope. Did they do stool samples to make sure you don't have anything else going on in there?

I see you're back on the Rowasa, hope that's a big help.

Interesting about the pancreatitis and the TPN causing it....you should ask what exactly that was in the mix that they suspect as the cause.

It's great your pain has subsided and that the h.pylori is finished. The nexium (if I remember correctly) will also help against the h.pylori.

When do the docs say you'll be able to go home?

Thanks for the update.....you're one tough cookie!

I agree with suenews....rest!
quincy
Posted 3/3/2010 1:08 PM (GMT 0)
Best wishes for a healthy recovery. This disease sucks but you can survive it. You're strong.

Denise
Posted 3/3/2010 1:15 PM (GMT 0)
Wow, it's stories like yours that makes us all realize how serious this disease can be! But you are a fighter but I agree, rest rest rest! I am happy you are improving and hopefully pretty soon you will be able to sleep in your own bed :)
Posted 3/3/2010 3:39 PM (GMT 0)
Thanks for the update. Glad to hear you are doing better. I hope we will soon hear you are out of the hospital and back home.
Posted 3/3/2010 4:19 PM (GMT 0)
Glad you're feeling better! Rest as much as you can!
Posted 3/3/2010 7:08 PM (GMT 0)
Thanks for all the support everyone! =D
All of your input really is very helpful to me.
I'm writing to answer a couple of questions you guys asked in your replies.
Quincy asked if they had done any stool samples to check if anything else was wrong. I don't think they did unless they got one while they tried to do the colonscopy. You also asked what exactly in the TPN was affecting my pancreas. I think they said it's the dextrose and liapose or lipase or I can't remember how it's spelled. It was like the lipids or something. But yeah if really threw things off. My blood sugars were running around 230 and since they took me off they're down to about 130.
A few people mentioned when I can go home. The doctor told me this morning that I'll be getting discharged tomorrow afternoon right after my second remicade treatment. They scheduled it so that I can get it before they unhook my picc line so they don't have to poke me again. :-)
And I so agree with Red_34's comment about realizing how serious this disease can be. I didn't realize how close to dying I was until I'd been in here for about a week and started feeling better. I just got so used to feeling like crap I didn't realize how bad it was. Even the doctors said that I was really close to needing my colon removed. And I know that I probably could have only gone another few days just because of my diet. I just was not eating anymore. And even when I got here I didn't eat for about 3 days. I would start to black out all the time and was really shaky. And I had lost so much weight I was just literally wasting away. And the pain. Good lord lol. My parents thought I was going into shock. Like if they said something to me I would look at them but they said I was looking at them like I didn't know who they were. So yeah it was pretty bad but I feel sooo much better now and I'm so excited to get back to school. I know I need to take a while off and rest still. I don't know what i'd do if I sent things backwards just because I tried to do too much too fast. But anyway. Things are looking up!! :-D
Posted 3/3/2010 7:16 PM (GMT 0)
Oh wow-I have been so out of the loop here-I am sorry you are going through so much. I am glad you are doing better, and I hope things keep getting better and better. DEFINITELY rest and don't try to do too much-I just got sprung from the hospital last night and I am really trying to guard against doing too much and ending up right back there. But it is hard!

Prayers are coming your way-keep up the resting and focus only on getting better.
Posted 3/3/2010 10:23 PM (GMT 0)
Hugs and best wishes to you, MeowMix!
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