Waking up during sleep to use bathroom

     Personally, I do not get up in the middle of the night, but I have been flaring quite a bit since May of 08.  When do you take your oral prednisone?  If you take it all in the morning, try dividing  it, 20 mgm with breakfast and 20 mgm with lunch.  Not saying this will do the trick but give it a whirl.  I have terrible insomnia with prednisone.

     What is your diet like?  Maybe try a bit of fiber.  Not all of us can tolerate fiber while flaring but it can add bulk to your stool.

     My doctor wants me on the cort enemas, but they just ooze right on out.  My problem is ulcerative proctitis.  My script for Canasa suppositories was still good, so I am using them every other night.

     I've had this disease for over eleven years and I can sympathize with you.  If Humira fails, I am looking at surgery.

The second sign that I was getting better was sleeping through the night. A huge relief. (First sign was bleeding stopping)
I take (and have for years) an over-the counter sleep aid.

The worse my condition was the harder it was to keep the Rowasa enema in for long. A real Catch 22. But it does help so keep trying.

Please consider eliminating gluten and/or grains from your diet, if only for a short time to see if you have improvement. That made my bleeding stop.
Later, removing dairy got me on the road to less D.

I agree with Christine that fiber can be a problem too. So MANY foods can hurt an already hurt colon. Just common sense.

Best wishes.

Hello mrrogeye, 

 I agree with the other post on cutting out the grains and gluten for a bit to see if there is any improvement.  Lettuce, was also something that I found to be harsh on the colon during a flare.  I always bleed more the next day if I had a salad the night before.   

I'm just coming out of a short flare myself and I find that putting vit e oil from the capsules into your enema bottle help to speed the healing and stop the bleeding.  I also took a couple capsules by mouth, not sure if it helped but it's suppose to be a powerful antioxidant with healing benefits so I'm sure it didn't hurt.   With this flare I also had cramping and spasms in the rectum it was the worst but I tried to sit in a hot bath to relax the rectum and take vit e and apply it inside the rectum with a q-tip or your finger  The rectum is usually the hardest and last part to heal.  I some times took buscupan to relax the intestines if the cramping was bad.  If your having troubles keeping the enema in maybe cortifoam or a suppository would be better, it's easier to keep in.

 Do you take a good probiotic?  If you don't you should be taking one a least a couple times a day on an emptly stomach.  There was a thread recently on what probiotic we all take and what we found works.  Once things calm down it is beneficial to add metamucil daily, I take it regardless of whether I'm flaring or not.  I just take a little less.

One last thing is to try to get enough rest.  The body seems to need this rest when we are flaring.

Thanks for the comments everyone

MyUC - I have been taking the pred at 40mg since last saturday so 7 days now, the week before last I was in a milder flare which I took pred at 40mg for 5 days then lowered by 5mg each day until I was down to 1 pill and then I stopped it was at this point that my mild flare that was improving suddenly exploded into a much more serious flare :-( I am supposed to start tapering at a much slower pace tomorrow by going down to 35mg for a few days and so on, just waiting for my GI to get in touch for an urgent appointment so that I can get properly checked out. as for diet I am trying to eat little and often to keep my weight off because in the first few days of this flare I just began eating less and with all the D I lost a bit of weight which probably doesn't help things.

Puffed Rice - I do take a probiotic i take Udu's choice super 8 with 30 billion viable cells. I usually only take this once per day as advised on the bottle and that is usually straight after my evening meal. is there a certain time of day that is best to take a probiotic for maximum effect?

Thanks,

mrrogeye:

Your welcome for the input.  That's the beauty of this forum.  I don't mean to sound stupid but are you always taking some prednisone?  I am slightly confused.  It sounds as if you have multiple tapered regimens.  The reason I am asking is that is sounds as if you might need to take a daily maintainence dose, often it can 10 mg or 5 mg daily to keep the flares from returning.  Please understand I am not encouraging that by any means because we all know that pred can cause a lot of harmful long term side effects.  It sounds as if you and GI need to have a serious talk about re-evaluating the severity of your UC.  My story is a typical one.  I was on Asacol and occasionally pred for a decade.  It didn't do much for me and my colitis got worse and it spread to involve the entire colon.  I was flaring on and off for 12 years.  The GI doc I was seeing didn't feel the need to change my rx and I never felt I got a grip on my UC.  I eventually switched to another GI doc at a major teaching hospital who put me on Imuran and I finally feel like I got a grip on my colits. 

How is your blood work by the way?  Meaning your wbc, hg hct?  It's very telling about your UC.

Food for thought,

MyUC

MyUC

I am not always taking pred, this is only the second time I have taken it since I was original diagnosed in 2008 only just started flaring at the beginning of this month started on the predfoam enemas which helped a little but not completely so started the oral pred about 2 weeks ago on a short taper which seemed to be working until I completed the course and it all flared up again only worse than before. I am just hoping this slower taper gets to grips with it but at the moment unfortunately I am not to confident that it will :-(

Good luck with the advice mrrogeye.

Interesting thing about the vit E oil in with the enema. puffed rice, how many capsules do you mix in with the hycort, and how do you go about getting the oil out of them?

You say you also take a couple of caps orally, is it possible to have too much vit E?

I think I'm going to try this because the hycort by itself is not doing the business for me anyways.

mrrogeye,  Probiotics are best when taken on an empty stomach, and on the bottle it suggests one capsule but that is usually the dose for healthy people.  I usually take morning and evening but when things get really bad I will take the probiotics up to 4x a day.  They can't do any harm.

Mackster- I bite a small hole in the softgel capsules and squeeze at least 8 of them into the hycort bottle, then I take one more to lubricate the tip so it covers the area when inserted.  I read in a medical book that vit e is non-toxic except at extremely high levels.  It really helps to stop the bleeding quick.

I've bumped this thread to add another question to my last post.

Are the vit. E capsules at 400iu or higher?

Bump

Any success with cortifoam for reducing the nighttime urgency?

mine was always the worst at night...sometime 6-8 times per night... really wears on you.  Seems much better since on entyvio. I always said it was because I eat more at night to function through the day.