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Order of symptoms. Am I getting better?

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Ulcerative Colitis
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Posted 11/16/2017 3:37 AM (GMT 0)
I have been on uceris since Nov. 4 for a flare that had me bleeding, having urgency, pain, and going 4 to 6 times. I have a less bleeding now, a lot less urgency, but when I go it is much more d. If I am getting better like it seems like I am, why the increase in d?
Posted 11/16/2017 4:20 AM (GMT 0)
Sorry to answer a,question with a question but are you on any other meds besides uceris? Uceris is a steroid and while it will help with symptoms its only temporary. Steroids are usually used as a rescue med while a maintenance uc drug helps heal your colon. Or that's my understanding, anyway.
Posted 11/16/2017 8:09 AM (GMT 0)
Sorry. Not sure why my signature didn't pop up. I am Balsalaside Disodium 750mg. I am on Uceris for 1 month. If this doesn't work, it is on to bigger meds.
Posted 11/16/2017 1:44 PM (GMT 0)
"I have a less bleeding now, a lot less urgency" Well that does sound like an improvement. Just not enough of one if you are still having diarrhea.

You only flared November 4th, so it's been only a couple weeks. You are going to have to be patient as healing never is as quick as you or I want it to be. Also, healing is never a linear process from flare to healed with a daily improvement until you're better. It is more like a rollercoaster ride, full of dramatic ups, downs, and twists. UC likes to keep us guessing and questioning our own progress as it is so darn erratic when healing. Best you can do is stop looking at bm-to-bm or day-to-day. Rather look at week-to-week, and say is this week better than last? As that is a whole lot more accurate.
Posted 11/16/2017 2:25 PM (GMT 0)
You know, I always felt a little crazy because every time I thought I was getting better I would get worse, so I appreciate the rollercoaster analogy. I have been in the flare since Oct. 20. I had one over the summer that responded to natural stuff so I didn't add more meds. This time I realized it was worse and am back on Uceris. I suppose since it had time to get established that it will take even longer.
Posted 11/16/2017 2:41 PM (GMT 0)
I'd wager you're going to need stronger meds after hearing your history and reading your signature. Less than a year into UC, you are very unstable. You have pancolitis that required a hospitalization, and have had two flares all since the start of this year. I'd prepare yourself for either imuran/6mp or biologics humira/remicade in the near future. Nobody is excited about the prospect of stronger classes of medications, but if you cannot maintain on lesser meds then it is just reality. I've done very well on remicade and 6mp, no side effects, and multi-year remission.
Posted 11/16/2017 2:49 PM (GMT 0)
what kind of rectal med fun are you using ?
Posted 11/16/2017 5:48 PM (GMT 0)
What daily dosage of balsalazide?

Is there a reason you arent on any rectal meds?

Have you had stool sampling done?

Improving bleeding-wise, yes. How many times a day are yiu going?

q
Posted 11/18/2017 8:38 PM (GMT 0)
I have been out of town because of extended family drama my husband wanted to shield me from. I suspect after researching that my GI hasn't mentioned rectal meds because my insurance does not appear to cover them. I was so exhausted last night I went to bed with my 6 year old. As a result, I forgot to take the Uceris and the third dose of my Balsalaside. I have been miserable today. I recognize symptoms I had later in my initial flare that tell me I need to call the GI on Monday and go to stronger meds. I appreciate the encouragement you veterans give when we meet people are scared to try the bigger meds. It does make me nervous to start so close to the end of the year. My insurance will not be available to me next year so I will be switching. On the one hand, if they put me on one that required infusions, it could mean I could switch to a closer doctor. I currently drive a hour and 15 minutes one way, which is harder when not feeling well.

I am on 750 mg of Balsalazide. Three pills three times a day. When I felt better i was doing vsl #3 enemas and would experience some improvement. I feel like I have turned a corner where that isn't really making a difference. Best days this last week I was going only 3 times. Worst day I had some food that wasn't great for me and had bleeding again and 5 times. This morning I could not get off the toilet for 45 minutes and was right back in just half an hour. In January before being hospitalized I would throw up at the same time, and I was feeling like that. That is a big part of what tipped me off that I am still getting worse overall despite the Uceris.

Rectal med fun. Made me lol TroubledTurds.
Posted 11/18/2017 9:26 PM (GMT 0)
Oh, no cultures. Have not actually seen my doctot
Posted 11/20/2017 10:22 PM (GMT 0)
I spoke with my GI's nurse today, now I am waiting to hear back from them. I told them I could tell the Balsalzide is not really working and that despite the Uceris I can tell I am getting worse. I have tried to keep in mind that a lot of you have said it can take a while for the meds to start working. I don't have a lot of reserve, so I am cautious of letting things go to far. I am almost 5'4, and I lost 20 lbs in the time leading up to my hospitalization. (Down from 115) I had managed to gain about 9 lbs back, but I know I have lost some again. I have a hard time not questioning myself, though, when I do something like this. I feel like I am exaggerating. I question myself if I did enough for myself (such as natural things), and the whole thing just makes me feel depressed.
Posted 11/21/2017 10:29 PM (GMT 0)
My GI finally called me back this afternoon. He is putting in an insurance request for Delzacol because I was on it in the hospital and it worked for me. I was surprised after what he had said about there being no point to trying other meds in the lower class, but I am good with trying it again. The question is, how much was Delzacol vs Apriso, and how much was solumedrol vs oral pred. How long should it take to hear from the insurance and know if they will approve my doc's request? Will my pharmacy call and let me know, or do I have to keep calling them?
Posted 11/22/2017 12:16 AM (GMT 0)
not to pee on your poodle, but maybe it was the Solumedrol that did the deed in the hospital ? or the pred ? or both ? or i'm full of poop ?

hmmm, anyway, delzicol i think is 2.4G/day -

oh, and just do what you have to get the pharmadingdongs to get you what you need ! bug the hell out of them at the very least -
Posted 11/22/2017 1:53 AM (GMT 0)
TrounledTurds, you are not peeing on my noodle. That is a big concern of mine too. I feel like if the Delzacol doesn't work, it will be very clear I need biologics or something along those lines. I have had a better day today, but now have one of those horribly painful hemmies. That and it feels like I have a painful bubble just under my ribcage that has been there since yesterday.

Post Edited (Spring) : 11/24/2017 8:32:44 AM (GMT-7)

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