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Posted 10/25/2010 12:53 PM (GMT 0)
Anyone else suffering from this? I literally went to the bathroom about 8 times last night.
Quick rundown:
Started Prednisone after a very bad flare back in July. First did a one month taper (20mgx1week, 15mg, 10mg, 5mg). Had a falling out with my GI so saw my family Dr. and he told me to go ahead and do a 2 week taper on the Prednisone again starting with 20mg and taper down to 5mg. (20mgsx2weeks and so on) I have been trying to get in to see Dr.'s at UVA for about 2 months now so he said to do that lower dosage of pred. until I got in there and could talk with Dr.'s.
So I had a wonderful surprise when I hit my 10mg this last time...I had a formed stool! I continued to have formed stools and absolutely NO symptoms. Got back to my life, was riding and showing horses and then BAM got down to the 5mg and started bloody stools and diarrhea again. Not to mention the frequency. I believe my problem here is that when feeling better on the pred. I stopped all of my other meds because I felt I didn't need. Was that my big mistake?
Now I am miserable again....but absolutely miserable. On top of the symptoms from this dreaded disease I am also suffering withdraw symptoms from the pred. any idea how long that usually lasts??
Posted 10/25/2010 1:29 PM (GMT 0)
Hi - Gosh, sorry for your trouble!
Since you asked... yes, I would think it was probably a mistake to stop all your other meds. What are/were they?
The 5-ASAs - Asacol, Lialda, etc are "maintenance meds" and are supposed to help to keep us in remission longer if we take them continuously.
Have you been on any of the rectal meds?

That said, tapering off pred can be difficult, especially around that 10 - to - 5 mg area. I'm by no means a doctor, but I think somewhere in between that is what our bodies naturally produce, and when we're on pred awhile our bodies stop producing it and let the pills take over... so when we get below the normal amount, we often have rebound symptoms. (Someone who is smarter than I, is that the gist?)
The way I got off pred eventually, without symptoms, was to start breaking the 5 mg pills in half and alternating days - 10/ 7.5 every other day for 10 days, then 7.5 every day for 10 days, then 7.5/5 every other day for ten days.........and so on.

Night poops such a you've described mean there's still flaring going on. Last spring my son had a mini-flare - the only symptoms was 3 -4 poops at night.
So... I know for some people they don't seem to work, or folks poke themselves with the applicators and tear fragile tissue, but - have you tried rectal meds?

My son went on a 2 week course of Flagyl (fairly nasty) started Metamucil and probiotics to get out of his flare.... and added one extra Asacol pill to his daily regimen.
Keep us posted! (heh, no horsey pun meant.....)
Posted 10/25/2010 1:53 PM (GMT 0)
I hate night urgencies. Both times it was a sever flare that resulted in hospitalization, the last time because all the inflammation and prednisone caused my platelet count to skyrocket and I had a clot.

All other flares did not have night urgencies. This flare began when I was doing fantastic and took a trip without any meds along and ate everything and flared hard. I wont do that ever again.
Posted 10/25/2010 2:05 PM (GMT 0)
i have at least 3 trips, often more.
Posted 10/25/2010 2:39 PM (GMT 0)

songlady said...
Hi - Gosh, sorry for your trouble!
Since you asked... yes, I would think it was probably a mistake to stop all your other meds. What are/were they?
The 5-ASAs - Asacol, Lialda, etc are "maintenance meds" and are supposed to help to keep us in remission longer if we take them continuously.
Have you been on any of the rectal meds?

That said, tapering off pred can be difficult, especially around that 10 - to - 5 mg area. I'm by no means a doctor, but I think somewhere in between that is what our bodies naturally produce, and when we're on pred awhile our bodies stop producing it and let the pills take over... so when we get below the normal amount, we often have rebound symptoms. (Someone who is smarter than I, is that the gist?)
The way I got off pred eventually, without symptoms, was to start breaking the 5 mg pills in half and alternating days - 10/ 7.5 every other day for 10 days, then 7.5 every day for 10 days, then 7.5/5 every other day for ten days.........and so on.

Night poops such a you've described mean there's still flaring going on. Last spring my son had a mini-flare - the only symptoms was 3 -4 poops at night.
So... I know for some people they don't seem to work, or folks poke themselves with the applicators and tear fragile tissue, but - have you tried rectal meds?

My son went on a 2 week course of Flagyl (fairly nasty) started Metamucil and probiotics to get out of his flare.... and added one extra Asacol pill to his daily regimen.
Keep us posted! (heh, no horsey pun meant.....)

I was on 3 Colazal 3xday. And 1 Canasa 1xday. I am very sad that I did this to myself. Like another poster said, I also ate anything under the sun because I was feeling much better...even drank wine for the first time in AGES! That may have assisted in this flare as well.
Without getting too detailed my poops aren't really poops at all, they have no consistency and a ton of blood. I sit and sometimes nothing really comes out at all but the urgency kills me! It burns so bad.
What probiotic does your son take?
Posted 10/25/2010 4:18 PM (GMT 0)
Hi son takes Align. Right now he's doing two a day, and that makes it pricey, but I buy it at BJ's (wholesale club) and use coupons, so that helps.

I think it's better with UC not to say "I did this to myself..." it's the darned disease! How long have you had it? I first had proctitis dxed in 1983..... and it was about a year ago that I figured out how to be proactive in the first first inklings of a flare! So, my advice would be, don't beat yourself up, say 'What did I learn" and go on - keep up with the meds and do better!
I almost always have a few glasses of wine on weekends and eat almost anything; but I continue with the butt meds long after I think it's healed, because I've learned there can be lingering inflammation, ready to spring back into action if I don't!
I hope you can turn this around and start to feel good again soon!!
Posted 10/25/2010 4:56 PM (GMT 0)
sorry about the night trips!!  Sometimes a heating pad would help me w/cramping and I think I would get up a bit less.
Posted 10/25/2010 8:40 PM (GMT 0)
The 5-Asa oral/rectal meds are both treatment and maintenance.

 If you can call your GP and ask to give you a 'script for Rowasa, starting them might help while things get leveled out regarding the pred drop).

q

Posted 10/25/2010 11:11 PM (GMT 0)

quincy said...
The 5-Asa oral/rectal meds are both treatment and maintenance.
If you can call your GP and ask to give you a 'script for Rowasa, starting them might help while things get leveled out regarding the pred drop).

q

I'm actually going to go to the Free Clinic here this coming Thursday to see if they will give me a script for Rowasa. I can't afford it otherwise. They are currently helping me get my other meds as well.
I have gone from TONS of energy to absolutely NONE and that peakid look on my face and cheeks all sunk in again. No fun at all! People ask me if I'm ok....'no I'm not!"
It just sucks because it's Halloween and God forbid I go out Trick-or-Treating with my 2 yr old son. I will have to send my husband out with him and have to miss it. Unless I wear diapers!
Posted 10/25/2010 11:51 PM (GMT 0)
Yeah, night time trips is a key sign I am trying to flare.
Posted 10/26/2010 1:06 AM (GMT 0)

Dr-A said...
Yeah, night time trips is a key sign I am trying to flare.

Oh I'm flaring...that's for sure. I was just in tears while sitting on the toilet...this is so depressing. Not sure what to do. I got all of my meds today and hopefully that will start kicking in (Colazal and Canasa). I am going to take the Canasa tonight when I go to bed because I can't seem to retain them right now during the day.
Posted 10/26/2010 4:00 PM (GMT 0)
Does anyone ever experience this:
At night when you are sleeping, if you change your sleeping positions you are awakened by the urge to go to the bathroom? It seems to me that this is what's happening and I'm just wondering if it's normal.
What about transit times for food? I drank an Ensure yesterday evening and about 3 or 4 hours later my poop was the color of my Ensure (which was Dark Chocolate). That is more a symptom of IBS, no? Is is possible to have UC and IBS at the same time?
Posted 10/26/2010 6:30 PM (GMT 0)
It's normal if you're flaring.

Are you eating more actual food?

The ensure wouldn't  go through you in 3 hours, but if you've not eaten all day and just had ensure, it's possible it might be from one before that or before that even..

What food did you eat during the entire day and the night before?


Yes, you can have IBS and UC flaring at the same time....that's what makes it all so confusing.

You should use the Canasa two or 3 times a day until you get the enemas on Thursday....

As well....fish oil can encourage that symptom. They do encourage people who are constipated to take fish oil because it keeps the stool lubricated. I call it SBS...slippery butt syndrome. I had it even when I wsn't flaring, which isn't a norm for me at all. I don't take it.

quincy

Posted 10/28/2010 4:24 PM (GMT 0)
Night trips suck, and getting off of pred is a real challenge for some (me included). It was very difficult for me to get off it. Ultimately, I ended up going on 6MP and getting on Remicade. I have been on Lialda for a long time.

I am now off 6MP and pred completely, in total remission and debating trying to step away from Remicade and see what happens.

I also think going gluten and sugar free (or mostly, sometimes I cheat) really helped.
Posted 10/28/2010 4:37 PM (GMT 0)
I always have always had increased frequency at night. Generally, I am up every 1-2 hours. It's been like this for over 3 years now and surgery didn't help that
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