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Is my flare subsiding?

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Ulcerative Colitis
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Posted 7/21/2015 4:23 AM (GMT 0)
I was diagnosed with ulcerative pancolitis about a year ago and started taking Apriso and Rowasa daily. During my initial flare I had no pain associated with my BMs and the medicine started working. In January I had another pretty bad flare having about 10 bloody BMs a day with mild stomach discomfort. I went to see my doctor and he prescribed me prednisone and we also changed my prescription from Apriso to Colazal because my insurance stopped covering Apriso for some reason. Luckily, my flare subsided without the prednisone and things were normal until a week and a half ago.

Things were going great, I was eating better, working out, and finally gained a little bit of weight (I'm a skinny 26 year old that has always struggled to gain weight). I started having stomach discomfort and had more frequent BMs. For the past week the discomfort has turned into intense cramps (much worse than my last flare) and I have been having about 20 BMs a day. The cramping stops immediately after I have a BM, sometimes I just pass gas and the cramping stops but most of the BMs are pretty large and it kind of sucks because I've lost most of the weight I worked really hard to gain in just a week.

I'm back to nightly Rowasa's, am taking 12 colazal a day, and am taking a probiotic. Just started Metamucil yesterday and today my BMs have been more formed (still frequent, and I don't understand how so much keeps coming out because I'm not eating as much as I usually do). There's also much less bleeding and mucus and the cramping pain has lessened. I still have the prednisone and am not sure if I should take that. I'd like to avoid a trip to my doctor because the visits are so expensive. My last check-up cost me the same as my visit for the January flare ($240 a level V office visit) because I was instructed to switch from nightly Rowasa to every other night.

It seems like I'm getting better because my stools are more formed (might be the Metamucil?) and the blood and mucus has lessened, but I'm still getting a lot of cramping and had about 15 BMs today. What do you guys think?

Edit: just looked up my chart and it says I had circumferential disease in the rectum and sigmoid and patches of inflammation in the cecum, ascending and transverse

Post Edited (godwarrior) : 7/20/2015 10:41:48 PM (GMT-6)

Posted 7/21/2015 5:10 AM (GMT 0)
call your doctor and see if they can advise you over the phone
it sounds like you need more aggressive treatment
have you ever tried steroid enemas? they work well for some people but its probably not a good idea yet as you are having too many BMs a day that the meds would just get lost
imuran/6mp might be the next step
although you may need some oral steroids until those kick in
but you most definitely need to contact your GI
(if price is an issue you can talk to the billing department and they may be able to help you out)
Posted 7/21/2015 3:05 PM (GMT 0)
How many Colazal were you taking before this flare up started?

I would continue with what you are doing as you are seeing improvement. Things don't always turn around as fast as we would like. I myself try to avoid oral steriods as much as possible but if the max of Colazal and the enemas aren't keeping your symptoms at bay you may need to take them and/or get on the next step in the med ladder.
Posted 7/21/2015 7:34 PM (GMT 0)
I was taking 9 Colazal before the flare up started. Last night I took 40mg of prednisone and I almost immediately felt better, I was able to sleep through the night and retained the enema for about 7 hours. When I woke up I had some pretty intense cramping and had 3 BMs. I ate some cereal and had another 20mg of prednisone and have felt fine ever since.
Posted 7/21/2015 11:04 PM (GMT 0)
You really should call your doctor and confirm that what you are doing is ok. I think the maximum recommended dose of colazal is 9 pills/day and prednisone is a very serious drug where proper dosage and a taper schedule should be followed. Pred is a rescue drug to get you out of a flare and then you slowly taper and let your maintenance medication take over They should be able to tell you over the phone. If they insist you need to come in, you should tell them your insurance issues and hopefully they can work with you on cost.

Calazal didn't work well for me. I had problems with Apriso too. Asacol HD works pretty well for me (along with homemade nopal water). There are also other mesalamines. Take a look at the Resources post that is pinned at the top pf this forum
Posted 7/23/2015 12:04 AM (GMT 0)
I talked to my GI and he said to start off on 60mg of prednisone and I have a visit planned for Monday. So far, the prednisone seems to be helping the cramping and I've had less BMs today than the past few days. I haven't had any bad side effects at all (yet) and it has actually been helping me sleep by calming the cramps down. I wonder if taking so much prednisone in my youth for my asthma has built up some sort of tolerance. Hopefully I can get off it ASAP though, I am not looking forward to the side effects.

Thanks so much for your help everyone.
Posted 7/23/2015 1:41 PM (GMT 0)
Okay, I spoke too soon. The prednisone was working, but now it only seems to be working for about 4 hours or so, and then the cramping pain comes back worse than ever. A few days ago the pain would go away after a BM but now it still lingers after the prednisone wears off. Do you guys think I should be taking a larger dose all at once or be splitting up my dose even further? I'm currently taking 20mg 3 times a day. I'm still waiting for a response from my GI. Since I'm not going to see him until Monday, should I request a prescription for the steroid enemas or anything else in the meantime?

Also, should I be eating less? I've been trying to eat as much as I can tolerate because I don't want to lose any more weight but I am having very frequent large BMs and don't think it's helping.

Thanks

Post Edited (godwarrior) : 7/23/2015 7:46:10 AM (GMT-6)

Posted 7/23/2015 4:44 PM (GMT 0)
Something just seems all wrong with this whole thing but I'm not exactly sure what it is. I hesitate giving advice due to your circumferential disease. Could you elaborate more on that? Do you actually know much about it? Have the doctors talked to you about it? I tried looking it up but I couldn't make much heads or tails out of it in relation to your overall condition.

What probiotic are you taking? How is your Asthma now? You mentioned being on Prednisone for it in your younger years but apparently don't take it now for the Asthma. Prednisone stays in your system for days so theoretically it can't wear off in four hours time. Most of the experts suggest taking the entire daily dose of Prednisone all at once in the morning, with food. That is really the best way to take it unless some find it works better splitting the doses up. Have you tried any dietary changes? Your diet could be partly responsible for your symptoms.
Posted 7/23/2015 5:19 PM (GMT 0)
If 60mgs a day of oral prednisone isn't enough, you might need IV steroids. I'd give it more time, but keep in touch with your gastroenterologist about your progress...
Posted 7/23/2015 5:37 PM (GMT 0)
I really don't know that much about the disease other than what I copied from my chart. I'm currently taking Culturelle. My Asthma is fine now, I only have to take my medication once a year during Winter and only use my Advair inhaler a few times a week. I never took prednisone pills when I was younger but I called my dad and he said they had me on large doses of inhaled (nebulizer) steroids when I had attacks.

I haven't tried taking the full 60mg in one dose because for the past few nights taking 20mg before bed has helped me sleep through most of the night. I woke up at about 6am today in pain again, took 10 mg and went back to sleep for a few hours. The pain just started to come back a little (1030am) and after taking another 10mg I feel fine. I have an exam at 2pm-4pm and will probably take another 10mg right before then. I'm still waiting for my GI to get back to me with his advice.

My diet has been pretty bland for the past week, mainly just white rice and chicken, almond milk and cereal, and toast with peanut butter. In the past (I've only had 2 bad flares) making these changes and sticking to the Rowasa had been enough to get me out of the flare, but I didn't have pain like this before.

Post Edited (godwarrior) : 7/23/2015 11:41:44 AM (GMT-6)

Posted 7/23/2015 6:58 PM (GMT 0)
I just don't know what to say about your UC condition but I would really grill the doctor about the other. It may be a major component to your problems and it may actually be more worrisome than your UC. I wouldn't let them get away with some kind of half ass explanation that leaves you dumbfounded after leaving the office. Something is just very wrong with how you are taking prednisone as that is just not right but I don't doubt that in taking it this way you feel better, although I have no clue as to why because Prednisone usually just doesn't work in that fashion. Even if Prednisone were to put your UC in complete remission I personally think you would still be having problems with the other. In any event, you can't use prednisone as a long term treatment. You need to get to the bottom of this other disease. Once you do that, then your UC might be easier to treat.
Posted 7/23/2015 7:29 PM (GMT 0)
Oh, by circumferential disease he just means that I have ulcerative pancolitis because there were patches of inflammation farther up in my colon. For the most part it is just the regular UC and I think most of the inflammation is in my descending and sigmoid. Sorry about the confusion.
Posted 7/23/2015 8:05 PM (GMT 0)
Every time I ever took pred I was instructed to take it all at once in the morning. If your dr told you to split the dose then definitely follow his instructions. If you are just doing that on your own, you might want to ask him if it's ok. I don't think you are getting the full jolt of pred you need by splitting it up, but I really don't know that for sure.
Posted 7/24/2015 12:13 AM (GMT 0)
My GI said it doesn't matter as long as I get the dose throughout the day. I'm going to continue splitting up the doses because it has been helping me get through the night. Splitting the dose seems to have worked for some, I came across this post from fruitgirl:

My GI had me split my dose into 4 when I was on 40 mg (10 mg each at breakfast, lunch, dinner, bedtime). When I dropped to 30, I dropped the bedtime dose, etc, etc, etc. A lot of people on here thought my GI was nuts, but I gained remission quickly, had very little problem with side effects, and had no problems with my taper. Of course, that might just be because I tolerate pred very well. said...

On a different note, my family doesn't agree with a lot of what my GI has told me, I trust him, I mean there aren't that many options out there, right? I'm going to go see another GI for a second opinion once I get some free time to make my family happy though.
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