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in the darn hospital on mothers day :-(

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Ulcerative Colitis
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Posted 5/8/2011 9:09 PM (GMT 0)
hey all,

Was feeling extremely weak and heart rate was up about 100 beats per minute at normal rest. I became concerned and dragged myself to the emergency (i hate coming to hospitals). Long story short, the news was not good and i needed to be admitted into the hospital. My blood count is extremely low about a 7.8 when they measured last night and a 7.2 this morning (could be from all the IV fluids that it dropped). The GI here is thinking about doing a transfusion if it drops any lower but since i am so young at 22, hes going to wait and see if it drops lower than 6.9, so im hoping it doesnt! As of right now, i am on antibiotics (flagyl), and hydrocortisone sod succinate 100ml, with some sodium chloride(Iron) all being fed through IV. My bowel movements are still loose and my white blood cell count was high, which is the reason why they got me on these antibiotics. They are still unsure whether or not i have an infection or C-diff, but the bleeding has subsided, so im hoping i can get out of here soon. If another nurse walks through that door, i am going to put a chair up against it LOL!. I have a sigmoidoscopy tommorow morning as well, but i wanted to ask you all, what do i do now? Once i taper off these steroids, what can i take to stay in remission? ill do anything at this point, stick it wherever.

Posted 5/8/2011 10:04 PM (GMT 0)
rama: I am sorry you're stuck in the hospital. If you're alreayd on Lialda and it's not keeping you in remission, they may opt for something like 6mp or imuran. The problem with both of those medications is that they can take a long time to work - up to 4 months... They may also offer Remicade. Remicade could get you out of the flare quickly but it is expensive and requires infusions at an infusion center. I opted for 6mp because I didn't want to deal with going for infusions but I've had a lot of trouble with 6mp and ended up having blood tests almost every other week which is probably more inconvenient than getting infusions.

When did you start prednisone and how long are you planning to taper for? Some people taper off without problems and are able to maintain remission with 5ASAs, oral and rectal.

I hope you're feeling better soon.
Posted 5/8/2011 10:30 PM (GMT 0)
Just started the steroid today through the IV and gave the doctor a hard time about it. I really didn't want to do it, but unfortunately I really had no other choice. After the IV, he said I can taper off with oral pills. I've lost a Ton of blood and need to get this under control. I think I'm going to try a new 5asa along with a rowasa enema after I get out of this crap hole that I'm in and try to change my diet habits around. Although I was taking lialda, I was eating whatever I wanted and wish I took some charge when I started to flare again instead of waiting till I needed hospitalization. (not a smart move on my part).
Posted 5/9/2011 3:17 AM (GMT 0)
You'll have to wait and see what they find on the scope. If the inflammation is low enough it might be as simple as adding a rectal med to your arsenal. They might also have you try a course of oral prednisone. Keep us posted! ;o(
Posted 5/9/2011 10:51 AM (GMT 0)
So sorry you ended up in hospital. I hope you feel better soon.
Take care
Posted 5/9/2011 11:05 AM (GMT 0)
Mmm, ok. Doing the scope this afternoon, so well see how that goes. Didn't need a transfusion, blood count went from a 7.2 back up to a 7.8 and I'm hoping higher today!
Posted 5/9/2011 12:46 PM (GMT 0)
hope u feel better...hang in there..:)
Posted 5/9/2011 12:53 PM (GMT 0)
Well scratch that off, doctor payed me a visit in the morning. Said my blood count went down to about a 6.7. He recommnened two pints, said he strongly suggest I consider. I don't think I should hold off, although I do feel stronger and the BM have subsided tremendously. Geez I'm in a tough spot right now.
Posted 5/10/2011 4:27 AM (GMT 0)
ramaNYC, I'm so sorry you're stuck in the darn hospital...feel better...i hope you can get out of there soon!!!
Posted 5/11/2011 7:38 AM (GMT 0)
well my fellow UC sufferers, i am back after 3 miserable nights in the hospital. I feel great on the other hand. My BM's are starting to form and subside with very little blood.(only going 4-5 times daily now) My discharge instructions scare me a little and are as follows. Prednisone -___- 60 mg a week. Followed by Balsalazie Disodium, 2250mg by mouth 3 times daily and a mesalamine enema at night. Now, This is alot of DRUGS! I wanted to ask you all if this seems a little too much?? I have read up alot on prednisone and would like to taper off it quickly, dont like the side affects at all but it seems to be doing its job along with the others. I have an incredible amount of energy, haven't felt this good in a long time. Also was told to take a calcium supplement that includes vitamin D. Can anyone recommend anything else while taking this steroid? I am hoping i receive little side affects as possible, for me personally weight gain would be a pleasure! Will take any input, and thank you all for the support!
Posted 5/11/2011 7:41 AM (GMT 0)
forgot to mention, also taking VSL 3 DS at night, to help put some good flora back in the old colon.
Posted 5/11/2011 11:31 AM (GMT 0)
Hi rama -
Glad you are back home and feeling better!
It sounds as if you are on a pretty standard amount of meds, to me.
The pred to taper off of, the calcium and D because pred depletes that......
Balsalazide for the 5-ASA, and the mesalamine enemas at night because the oral 5-ASA's don't reach the bottom that well....... and good old VSL to help restore good bacteria.

Of course you want to get off the pred quickly, but.....follow the taper schedule your doc has outlined - and what is that schedule?
Pred can sure increase appetite, but if you eat nutritious foods and try to stay away from salty snacks, you might be more likely to gain "good" weight.

Keep us posted!
Posted 5/11/2011 1:20 PM (GMT 0)
i got a moon face shape while on it...and mood swings...so let ur family know the side effect so they understand the potency of the drug...but it will bring down the inflamation...and yes taper off slowly. good luck and glad ur home. :)
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