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Posted 5/5/2012 2:08 PM (GMT 0)
Hi,

I've had left sided moderate UC for 4 years and manged ok on 5-Asa type medication. I have been in a bad flare for a while so I started 40 mg of prednisone. I have been on that for 2 weeks now and am getting worse every day. I'm up to 12-15 urgent movements with lots of bleeding and no formation at all.

What should I do? At what point do you go to the hospital or where do I go from here?

Any help would be appreciated.

Thanks
Posted 5/5/2012 2:19 PM (GMT 0)
I was hospitalized many times for my UC. Basically when I knew I had to go was when I was too weak to get out of bed and function properly. I would be dizzy and terribly weak. I also would be nausiated and couldnt eat. Every time I felt like that I was very anemic and dehydrated. If you have a lot of bloody bowel movements, that's definately a concern. At the very least you need to call your doctor. Best wishes.
Posted 5/5/2012 8:45 PM (GMT 0)
Which exactly 5ASA type medication?

Who put you on the pred?

Since you are getting worse, you would be wise to put in a call to your doctor, and ask if you could have stool samples done to make sure you don't have some sort of invader.

How are you feeling otherwise? As BBUC suggested, if you're feeling very week, dizzy, etc...it would possibly be better to go to the hospital. But, if the hours you need to wait there are extremely long, and you're feeling OK other than the multiple toilet trips, I'd suggest you wait till you get a hold of your GI.

Are you eating? are you taking in enough fluid/sugar/salt?

q
Posted 5/5/2012 9:27 PM (GMT 0)
I was on salofalk, 8 pills a day.

Saw my GI 10 days ago who said to go on 40 mg of Pred and call him in 2 weeks.
I have actually gotten worse since then.

Many many bathroom trips and some decent abdominal pain.
Other than that I'm ok.

Should I just call him on Monday?

Is it possible to not respond to 40 mg at all but get symptom free at a higher dose?

Thanks
Posted 5/5/2012 9:42 PM (GMT 0)
I personally would have to be on deaths door to go to the hospital. I would call the doctor. Some people need a higher dose of pred. Also, are you using any rectal meds. If not I would definetely ask for them.
Posted 5/5/2012 9:49 PM (GMT 0)
Can I take any rectal meds in addition to the Pred?

It's just strange that I'm worse since starting prednisone.
Would I typically go on a steroid enema or a 5-Asa type?

Thanks
Posted 5/5/2012 10:19 PM (GMT 0)
Yes you can take the rectal meds while on pred but probably not the steriod ones. Rowasa is a 5-Asa type rectal med and for me has always worked really well. I use them once or twice a week on a maintenance level and if I even start to see any kind of symptom creeping up I will do them nightly. I'm hoping to avoid taking pred again if I can.
Posted 5/5/2012 10:21 PM (GMT 0)
I guess I'm just curious as to how a 5-Asa rectal type med may work when a high dose of steroids currently isn't.
Posted 5/6/2012 12:17 AM (GMT 0)
Chris_1987,

Welcome to the forum.

Chris, the two are very different, and have different delivery systems.

The rectal meds get right to where the problem is, whereas the prednisone is systemic.


 

Posted 5/6/2012 1:08 AM (GMT 0)
Chris when I was first diagnosed I was in the bathroom probably 30+ times a day and was put on Lialda and Rowasa. Within just a few days I was almost normal. I have had two flares since being diagnosed and both times my doctor put me on pred. The first time it helped within a few days. The second time it helped some but did not bring me into remission. Never did he say to use the rectal meds daily until you get out of this. I was never told to stay on a maintenance dose either. I learned that from this forum. I'm hoping to never have to use pred again. I would give it a go...can't hurt to try and you should know if its helping usually within a few days but defintely within 2 weeks.
Posted 5/6/2012 1:17 AM (GMT 0)
Does your clinic have an after hours nurse line? If so, they can do a quick assessment and put you in touch with the GI on call if need be. Urgent care is also an option.
Posted 5/7/2012 1:42 AM (GMT 0)
I have been hosptilized twice, once in Feb and the end of April.  Both were due to 10-15 Bm daily, blood and mucos.  The oral preds were not getting to the colon fast enough.  So they had to put IV steriods and antibotics.  Each stay was between 3 and 6 days.  Although not pleasant, it did help with my flare.  I had another colonoscopy this last time, (2nd one this year) and the first one showed pancoloits, and the 2nd one showed improvement (just not as fast as my doc or I would like) and only left side.  So the meds have been working, it's just a long process.

Either talk to your doc, or take a trip to the ER. 

Posted 5/7/2012 2:06 AM (GMT 0)
Why was the hospital stay not pleasant?
What would they do if I did end up going?

Are CAT scans or ultrasounds ever done for UC?
I'm going to call my GI first thing tomorrow morning. Could he ever recommend a visit to the hospital? I'm just worried if I let it linger, my UC could get worse. I had 30 bathroom visits yesterday.

Thanks
Posted 5/7/2012 3:22 AM (GMT 0)
chris, i had an abdominal ultrasound and also had to drink this weird barium drink to make my insides glow.

maybe you need to go on something stronger like remicade or 6mp? prednisone never relieved my symptoms (IV or Oral). flagyl did help a little bit though. it lessened my cramps and gas a lot.
Posted 5/7/2012 3:53 AM (GMT 0)
I have been hospitalised three times with this cursed disease. The first was in 2001 when I was diagnosed (finally). I had severe pancolitis and only just avoided surgery. I was there for 12 days but recovery into remission took many many months.

The second time was in 2007 when i flared after being in remission from the first attack . I panicked because I didn't want to get so sick again so I was happy to go to hospital. I was there for 5 days.

The third time was in 2010. We went to Europe on vacation and I forgot my meds. Remission had made me lazy and forgetful. Needless to say, I flared on a cruise ship in the middle of the Med and was very, very ill by the time we docked in London 8 days later. Caught a flight home (half dead) and was admitted straight to hospital for 14 days.

Now I'm flaring again, but mildly. I had a choice to go to hospital or stay home. I have chosen to stay home because I'm nowhere near as bad as I was the first and third times - I'm about on a par with the second flare. I'm currently on oral Pred and Imuran. I have my bloods taken every week and see my GI weekly too. His nurse calls me (or i call her) every day to check in.

I loathe hospital. I will only go if I feel as dreadful as i did the first two times and I know that there is no other alternative for me than IV Pred and IV fluids because i'm so dehydrated and exhausted that i can't keep anything down or in. I get anxious that I might have to share a bathroom (despite being assigned my own room on each previous occasion) when i need to go 24 times a day. I hate the lack of sleep, being away from home and the depression that sets in even though I try to moderate it. I hate being away from my family (husband + dog), even though the nurses and doctors have always been very kind to me.

Only you will know what your limits are. I'm only going about 15 times per day (mostly at night) and i am retaining fluids and some low residue solids. BUT if i were going 30 times per day, I'd probably be packing a bag because going by my previous history, I couldn't come back from that without being admitted.

Best of luck.

Post Edited (foxy) : 5/6/2012 9:56:07 PM (GMT-6)

Posted 5/7/2012 12:35 PM (GMT 0)
It could be a really bad flare, but it also sounds like it could be C-diff. I would contact your doctor or the doctor that is on call. If you are feeling that terrible, go to the ER. They will check you and treat you right then and there.

Honestly, I go to the ER if I cannot take it anymore. If I cannot even flex my butt muscles to go to the bathroom one more time, I am done. I guess I base mine on my pain tolerance.
Posted 5/7/2012 12:38 PM (GMT 0)
Would it be a good thing if it was C Diff as that is fairly treatable.

I just don't know how I would have contacted that as I haven't travelled or been in a hospital lately. I am now going to the bathroom every 20 minutes or so. It looks like a small clump of dirt with blood each time.

Also severe pain middle left side of my stomach.

Thanks
Posted 5/7/2012 12:48 PM (GMT 0)
I have gotten is several times from not going anywhere.  I am not say that is what it is, but it is a possibility.  They will treat it with flagyl. 

Have you gotten a hold of your doc?

Posted 5/7/2012 3:54 PM (GMT 0)

Chris_1987 said...
Hi,

I've had left sided moderate UC for 4 years and manged ok on 5-Asa type medication. I have been in a bad flare for a while so I started 40 mg of prednisone. I have been on that for 2 weeks now and am getting worse every day. I'm up to 12-15 urgent movements with lots of bleeding and no formation at all.

What should I do? At what point do you go to the hospital or where do I go from here?

Any help would be appreciated.

Thanks

When prednisone does not work I go to hospital. Last time it was 100mg and not working but I switched to Librax and Sulfasalazine as the doc agreed I was headed to hospital so nothing to lose. Bleeding stopped that night, took months to get off prednisone. I ended up in the hospital later for something else.

Librax is terrific.
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