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Ulcerative Colitis
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Posted 7/29/2017 11:04 AM (GMT -5)
Booo. I called my doc on a thurs bc my symptoms were getting worse. She said not to be a hero and that if I wanted to back out of the study, that's fine. But if I increase my pred, it means I can't do the study/drug trial anymore.

So I'm waiving the white flag. I had an accident this am and am averaging 12x/day. Well that was my count yesterday, and sometimes if it's not D, then I'm just dripping blood into the toilet.

Doc is worried out dehydration, wants to do IV pred bc it works faster and is more effective, do bloodwork and some other tests that can easily be done in the hospital.

And, I'm moving today- yes, the movers are at my apartment as I type this (with my fiancé) and I'm at the new apartment laying down on the couch. I hoping to get through today- told the doc I would go later today. The hospital is also an hour away, sooooooo, not super convenient.

So fingers crossed this works.
Posted 7/29/2017 11:12 AM (GMT -5)
Oh craaap!
Hugs,
q
Posted 7/29/2017 11:39 AM (GMT -5)
Oh man! And moving too!

What study?
Posted 7/29/2017 8:05 PM (GMT -5)
Move went well. I even fell asleep at the new apartment waiting for the movers to arrive.

So here is true plan- 20 mg of pred IV every 8 hours- so 60 mg daily. Blood work came back okay- some slight elevations but nothing to worry about. They even let me have a sandwich for dinner! Score!

Ok actually just waiting to get a room now, but that's going to happen soon.

I kind of feel better now that I'm here. I want to just go to sleep, prob bc my body is fighting. But compared to when I was admitted a few months back- I'm fine. I kinda feel like I don't need to be here. Like I'm not sick enough. Compared to last time I guess I'm not AS sick. But I'm still sick. Does anyone else feel like that?

Is it relief that your finally getting good care and you don't have to worry or is it bc I'm sitting here not going as much bc I'm not moving around as much as I would be if I were home and going about my life. I feel like I'm kind of wimping out and I'm not sick enough to be here.
Posted 7/29/2017 8:07 PM (GMT -5)
And it was the doc on call who suggested I be admitted, not my regular gastro. I wonder if my regular doc would know not admitted me? I wonder if he'll be mad at this other dude when he finds out on Monday. Prob not, since they are all on the same page at the same practice right?
Posted 7/29/2017 8:33 PM (GMT -5)
Bummer that you are back in the hospital, but hopefully you will stabilize soon. Glad the move went well. Don't worry about what your doc will say, you clearly hit a personal limit and did what you felt was best for you. Hang in there.
Posted 7/29/2017 8:56 PM (GMT -5)
I am sorry you're there, but it sounds like you're feeling positive and in good spirits. Get some rest and try to recover. I am sure you will get a good plan in action and be feeling better very soon. I am happy your move went well. Maybe having the stress of moving out of the way will help you to focus on you.
Posted 7/29/2017 10:33 PM (GMT -5)
So sorry! Hope things get under control soon!
Posted 7/30/2017 8:14 AM (GMT -5)
I hope you feel better soon and get on a good treatment plan that works going forward.
Posted 7/30/2017 9:03 AM (GMT -5)
Thanks everyone.

My bloodwork came back better than they expected - just slightly elevated but nothing indiciative of a severe flare. I've only gone twice overnight (bloody mucus) and once this am (and this was semi formed stool). I'm off IV fluids and planning on eating - sandwich for lunch.

Plan is to have a Felex- sigmoid in the am to see if it's a flare, fissure, or IBD. Then take it from there. If I can leave tomorrow he said I can prob leave at a Lowe level of pred (40 or even 20 depending on my scope results), so that's good news! Maybe I won't have to go through the horrible side effects of the high dose for a long period of time.

He did mention surgery- as I know it's kind of my last option at this point. Not sure when tho. I'm getting married In late oct and honeymoon in Dec to Hawaii. Not sure if be able to fit the surgery in before wedding and be able to enjoy it. Barring no complications and stuff. Idk. Just hanging tight for now.
Posted 7/31/2017 10:25 PM (GMT -5)
Glad your doing better. I wouldnt stress about surgery at this point as you have to just focus on feeling better for now.
Posted 8/1/2017 6:57 AM (GMT -5)
Well, I'm still here. CHecking in on Sat but hoping to go home today (tues). Imthe flex showed moderate to severe inflammation at the end of the colon, but the upper level looked okay. They added hydro enemas which i started last night. They were hoping to send me home today if my trips subsided. I had two bouts of D yesterday since the procedure and have had bouts of blood/mucus 6 times. I'm waiting on the doc this am to see if she will indeed send me home. I just want to feel better. Getting bored here too :/

I also transitioned to oral pred yesterday - down to 40mg. They want to see how I do with oral rather than IV, before they send me home.
Posted 8/1/2017 8:05 AM (GMT -5)
Woot woot- going home today- just got the go ahead! I am a little surprised though bc I've gone theee times since waking up (and it's only 9am). I just hope I'm not back in here in a few days. They said to follow up with my doc but he's on vaca for the week. So another week without a solid plan. Hoping he 40 mg works. Doc said it was just proctitis. I hate when they say that. "Just" - it's just almost crapping your pants (or actually doing it), blood, mucus, D, and the tenemus is the worst. But no big deal.

Post Edited (Doggiedo) : 8/1/2017 7:15:07 AM (GMT-6)

Posted 8/1/2017 9:45 AM (GMT -5)
Good news, I hope it works out well.

I'd like to give these doctors Ulcerative Proctitis for a day, just so they can see what a "no big deal" it is, jeesh. Any amount of moderate/severe and active inflammation is hell, especially within the rectum which is responsible for controlling urgency, frequency, tenemus, and causing accidents! To speak to how bad it can be, we've had members post that they got surgery due to a quarter-sized area of severe inflammation that was unresponsive to everything, and making their life absolutely miserable.
Posted 8/1/2017 9:53 AM (GMT -5)
Wow, I hate to say it, but I remember having a flex sig toward the end of my medical options and things were severe - even with everything I was on... Wedding in Oct makes things tough for sure. In retrospect, i'd much prefer to have a wedding post surgery vs having it on pred. I am tiny now, I was so big and awful on pred. Not to say looking a certain way at your wedding should be a priority... I felt so bad about myself on pred, covered in acne, hair, fat face, and I looked big boned. It's good that your bloodwork was good. I guess there's no reason to be stay in the hospital if you're not in any danger. I turned down the pred even though things were severe because I couldn't handle looking the way I did. Maybe you will get out of there and things will turn around with the pred. I hope so!
Posted 8/1/2017 10:07 AM (GMT -5)
I'd agree with NSSG regarding getting surgery out of the way before the wedding could be a good idea, if you know that is what will ultimately happen (why delay the inevitable?). Months of prednisone at high doses is enough to drive anyone insane, and with an approaching wedding and all of the stress that entails... you've been on two biologics, remicade and entryvo, so the odds of success on a third do drop considerably.

It really depends where you are at, and what the next plan is (e.g., stelera or xeljanz). There might be other biologics to try, and more fight in you, which is great! Just make sure you've got a plan once you're home, have spoken to your doctor and know the plan ahead. And have a timetable for how long you can afford to be wait for results.
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