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Ulcerative Colitis
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Posted 12/22/2011 4:35 PM (GMT 0)
First off I want to say this site has helped me so much, I don't post too often, but lurk all the time. I was diagnosed with moderate left side colitis in the spring, had been doing okay with it until about 2 weeks ago. It first started with "normal" diarrhea and vomiting. A few days later the blood came. I went to my GI last week and was started on oral steroids. They didn't work and on Monday my doctor admitted me to the hospital for IV steroids, fluids, and pain control.

There was a mix up and I didn't get the steroids until Tuesday and yesterday I started feeling better, down to about 5 bms a day with a little blood and flesh. Then last night it all came back, went about 12 times in the span of 6 hours, the pain increased, and vomiting. The GIs just came in and said that if it doesn't improve I will have to be scoped tomorrow. I haven't been able to eat solids since Sunday and I thought today I was going to be able to eat solids and try the oral steroids but with this backstep I can't :(. I just feel so sad being here around the holidays... and I'm about 90 minutes from where I live so not many people have come to visit.

Sorry, guess I'm just having a pity party :(
Posted 12/22/2011 4:45 PM (GMT 0)
And you are certainly entitled to your pity party! No one wants to be in the hospital let alone around the holidays. I'm sorry you are doing so poorly. Please let us know if you have the scope and what the results are okay?
Posted 12/22/2011 5:11 PM (GMT 0)
yes, pitty party is a-OK.....It's unfortunate you're in such a state, but good you're in the hospital and having a scope done asap..which should be done anyway even if you do improve.

As strange as this sounds, I hope there's something that is obvious so that it can be dealt with.

Please let us know what's going on. I know it's difficult to not have support close to you, but it's certainly a huge plus to have e-friends available.

Hang tough..
q
Posted 12/22/2011 5:25 PM (GMT 0)
hi pity party is fine
this happened to me many years ago lying in Hospital with bad bad UC for the 1st time asi laid there istared to read a Readers Digest and there was a quote saying Your own worst fears are the biggest liars you will ever meet that was 25years ago so i am sure you will be ok
Posted 12/22/2011 5:28 PM (GMT 0)
I am sorry you're feeling down. I hope things turn around so you can get out of there ASAP!
Posted 12/22/2011 5:54 PM (GMT 0)
Thanks everyone, I am always happy to make more e-friends :) My name is Liz btw :)

I am hoping it is something obvious too, just the other day I looked at my boyfriend and went "wouldn't it be nice to go to the er just because I broke my arm and it required a cast and pain meds?" lol.

I'm very lucky to be in an excellent hospital and they provide great care. I even got to wash my hair today using this cool space age type shower cap that had shampoo in it and you rubbed it in and washed it completely.

I have to say I feel a lot more human than I have for the past few days thanks to just being able to wash my hair!

thanks for the support :)
Posted 12/22/2011 7:41 PM (GMT 0)
Hey Liz,

It sounds like you're starting to feel a bit better. Try to take it easy and focus on getting better. You will be out of there very soon. Are you having a scope?
Posted 12/22/2011 7:47 PM (GMT 0)
notsosicklygirl: they said that if the symptoms don't improve by tomorrow I will have a scope. At this time I'm honestly not seeing anything wrong with having one, as my symptoms keep going back and forth. I really just want them to figure out what is wrong and if it is something other than the UC flare to treat it accordingly as I have been on IV steroids since Tuesday and while I didn't expect it to be fully gone, would have at least thought I would get somewhat better. As it stands now I am on IV fluids and clear liquids. I was supposed to graduate to solids today but last night kind of 86'd that idea.

The biggest problem of all, though, is that I REALLY want a pizza... and I have celiac disease and I'm craving a "real" pizza and not gluten free lol
Posted 12/23/2011 1:32 AM (GMT 0)
Well the nurse just came in and said that they are gonna do the colonoscopy tomorrow... I am really not looking forward to the prep, although I'd be shocked if I had much left in me anyways... I'm more afraid that I'm going to throw it up, the most I've had has been 3 cups of beef broth a day since Sunday so I can only imagine how much I'm gonna have to drink of the prep :(

I'm also going to have to go under general because when they did the colonoscopy in the spring it took them a huge amount of versed and demeral to knock me out.

Bummed, as when I was admitted on Monday they were all so certain that I'd be released by today.
Posted 12/23/2011 2:27 AM (GMT 0)
sorry to hear this liz! best of luck on the colonoscopy tomorrow and definitely update us. crossing my fingers you'll be back home soon.
Posted 12/23/2011 2:42 AM (GMT 0)
Hang in there Liz, at least you know more soon and they can get you feeling better
Posted 12/23/2011 3:01 AM (GMT 0)
Nurse just came in and have to drink the whole jug and they don't have any flavoring to put in it :( I seriously feel like crying. I am thankful for the IV phenergan, but also so worried about puking this stuff right back up and can't tolerate zofran or compasine :( :( :(
Posted 12/23/2011 3:17 AM (GMT 0)
Hang in there. Try not to worry about what you can and can't do. My best friend was in the hospital last year and kept throwing up the prep. They ended up having her to the Miralax/Dulcolax prep. She was finally able to get that down. Hopefully this prep will clear you out quickly and you won't have to do the whole thing.
Posted 12/23/2011 4:54 AM (GMT 0)
I am about 40% done with the prep and it seems to be "clearing" up some. I just asked to see if they can give me Ativan as sometimes that helps with the pukey feeling Plus would help my nerves at the moment
Posted 12/23/2011 8:14 AM (GMT 0)
well, you'll be finished the prep by this time. Sounds as though it went fine.

Looking forward to hearing about the scope...maybe you can watch the monitor while in a nice stoned state..lol...at least you'll KNOW what's going on in there visually. SO worth the prep.

Keep us posted Liz,
q
Posted 12/23/2011 2:43 PM (GMT 0)
I will certainly keep you all posted, I'm scheduled for 11 AM as long as I'm clear. No fun sleepy state for me, I have to be given general because I have a high tolerance to things that make me sleepy, so after my last scope the doctor said that I had to be knocked out from here on out (which isn't all that bad, I guess).

I know it's stupid, but I'm worried they won't find anything. I really want them to find something so that we can get on an action plan so that this doesn't happen to this degree again. As it is, I am going to be in here for the holidays.

Will update when I'm done with the scope.

Thanks for all the well wishes!
Posted 12/23/2011 3:05 PM (GMT 0)
Hey Liz, good luck this morning. I am sure they will find something and be able to treat it. Hopefully you can get out of there soon. I feel so bad that you're stuck there for the holidays.
Posted 12/23/2011 7:15 PM (GMT 0)
Well I just got out of the colonoscopy.. didn't really show too much, minor pan-colitis and they took biopsies for infection. The whole thing was horrible, my regular GI had told me that whenever I have to get scoped that I need to be knocked out with general, but they weren't able to do that today because they didn't have an anesthesiologist available. I read the doctor's notes and it just said to continue on with current treatment.

But oh my God the pain was horrible during the scope. I was crying most of the time and when I finally got out I was a 10/10 on pain, and that was after passing most of the air. Luckily my floor nurse gave me both my pain meds when I got back on the floor right away.

They said it was normal, but still frustrating that I am passing a lot of blood due to the colonoscopy. I am still in a lot of pain, but wanted to post an update.

Thanks everyone <3
Posted 12/23/2011 8:01 PM (GMT 0)
The doc would have taken lots of biopsies, hence the bleeding. I can last a few days.

Are you on only systemic steroid meds at this point?

q
Posted 12/23/2011 8:05 PM (GMT 0)
I also have some weird type of blister thing on my elbow along with one on my thumb. No idea where they came from. They aren't bed sores, but puss filled...the nurse said it looks like a spider bite, but doesn't itch
Posted 12/23/2011 8:06 PM (GMT 0)
Poor thing. That sounds terrible. I hope you're able to rest and heal so you can get out of there soon. Mild pancolitis flare can make you miserable with symptoms. My scopes always show mild but I experience awful symptoms.
Posted 12/23/2011 9:55 PM (GMT 0)
The only steroids I'm on at this point are the IV ones and the Lialda. I have never had bleeding post colonoscpy before, so I'm relieved to find that it is to be expected.

It's amazing how something "mild" can make one feel so sick.

My doctor is amazing, after I told him this morning about them not having any Crystal Light to mix with the prep he told me he made a few calls around and was now looking into requiring the pharmacy to include drink mixes with each prep that is sent to a floor. He also said he contacted the dietary department and made sure that they had plenty stocked and alerted the floor nurses to that as well. I really appreciated how much he went above and beyond.
Posted 12/24/2011 2:50 AM (GMT 0)
Hey twizliz - hope you're feeling better. I'm very new to the UC world, but if it's any comfort I had lots of bleeding post colonoscopy. GI said it was totally expected b/c of # of biopsies. Hang in there....
Posted 12/24/2011 3:42 AM (GMT 0)
gosh, i'm so sorry to hear all of this you are going through. i sure hope your symptoms improve and you feel better soon. hang in there - at least the scope is over with. maybe it's just taking the pred longer to kick in - that has been known to happen with some people. i'll keep you in my thoughts and hope that you can go home soon!
Posted 12/24/2011 2:46 PM (GMT 0)
So the GI doctors just came in and said that I can try to eat and take oral steroids today and if they are okay I can go home tomorrow. I know I should be happy about this, as it is Christmas, but I'm actually really worried. I feel like here I am being taken care of and if anything were to happen a nurse or a doctor is just outside my door. I worry about going home and then being back in the horrible pain and diarrhea.
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