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Ulcerative Colitis
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Posted 11/4/2012 5:33 AM (GMT 0)
I'm on day 5 of my first round of prednisone and yes, things have improved a lot! The bathroom trips are down from 25+ to 5 or so. I've been sleeping through the night.

Today I was able to watch my grandbaby for my son and DIL while they moved into a new house. Earlier in the week, I felt like I could just sleep myself away.

So, my expectation isn't that I should be 100% already, but how much better do you want to be before you start to wean off the prednisone?

I had a difficult and painful BM after I ate some pineapple, twice today (so I'm pretty sure it wouldn't have happened if I hadn't eaten the pineapple). When I do go to the bathroom, I get tingles all over, right before and I feel nauseous during the BM and so exhausted afterwards I could just fall asleep on the toilet pot.

Also, I am feeling pain all along the outside of my abdomen, nauseated but feeling hungry. Feeling worse in the evening.
Posted 11/4/2012 5:37 AM (GMT 0)
No, it wasn't the pineapple....you're flaring, as I would compare my own experiences.

Why aren't you on any rectal meds? call the doctor and ask for mesalamine retention enemas to deal with this flare. You're making it about food...and it isn't. You're flaring.

q
Posted 11/4/2012 5:53 AM (GMT 0)
Thanks quincy,

I know I'm flaring and it's not because of the food. The pineapple just triggered a bout of diarrhea. I have Salofalk on hand to use but what is stopping me is that sick feeling I get while using them. I'm freezing when I go to bed and I it's so hard to inflict discomfort on oneself when I feel yuccky.

Usually I can put my big girl panties on and deal with it but I'm just not there yet.

I keep telling myself that I'll get on them once I feel better. I did try one earlier in the week, by the way and it came out before I could get to the toilet. I'm feeling pretty scared I'm understanding I'm in a boatload of crap this time. I also can't access my GI right now.

Did you have any advice on the prednisone by the way?
Posted 11/4/2012 6:25 AM (GMT 0)
I've never been on prednisone...nor do I want to be. But, I think it's an oportunity for you to start using the enemas once you're tapering the prednisone and continue when you're off. That will set you up for future treatments and maintenance.


It's good you're having relief to finally sleep.

You mention sick feeling when using them...you mean once inserted or always?

q
Posted 11/4/2012 1:29 PM (GMT 0)
For the best results from prednisone you have to keep on taking it at a high enough dose until your colon is actually totally healed and then taper back. If your colon isn't totally healed and you taper back too soon you will immediately get worse all over again. You just have to remember that prednisone only weakens your immune system, giving your colon time to heal. It does no effect the underlying reason why you have UC. Once you taper back and off your immune system is no longer weakened and your body will resume attacking your colon all over again unless you have some kind of other method in place to help maintain remission. If you don't have a successful remission maintainance therapy in place already it is only a matter of time before you are back to square one all over again. Sometimes diet alone can be this remission strategy but in most cases it will not be enough and I'm afraid that you don't fall into that category.
Posted 11/4/2012 1:36 PM (GMT 0)
as I'm squeezing in the medication, I get that tingling feeling in my body(I thought this was typical as I'm pretty sure I've heard others describe a feeling like this) and a nauseous feeling in my throat. I have to breath myself through it. It's fairly transient, but I just don't know if I can put it on myself while I feel this yuccky.

Thanks again, you're practical suggestions are really great. AND you're generous to stick around and help folks like me when you don't really need to yeah

Gary, that is a really good explanation even I can understand!
Posted 11/4/2012 3:29 PM (GMT 0)
Lodi describe your nauesous feeling. Sounds confusing. Maybe youre feeling the acid reflux from the prednisone? Only other type of nauesous i felt during BM was because of pain of trying to push out solids with and inflammed colon/rectum.
Posted 11/4/2012 8:02 PM (GMT 0)
I have experienced acid reflux and I don't think it's that. I just get this wave of nausea that goes through my body. It must have something to do with the ulcers on the colon. Like it sounds like you experience a similar thing, I get the same wave of nausea most of the time when I'm having a bowel movement. Just a feeling you need to hurl, so maybe the feeling originates more in the tummy as opposed to the throat. I'm just busy trying to get through it, hard to analyze.
Posted 11/4/2012 8:09 PM (GMT 0)
Lodi....thank you for the kind words.

I've had that feeling with every enema throughout the first year and into the second. I'd feel OK and then it would hit shortly afterward. My only way to get through it was to grunt and moan and breathe through it. Eventually...anywhere from a minute to 3 minutes it would start to subside.
It hit again sometimes about a half hour later.....same process.

I think if you request to use an antispasmodic about a half hour before bedtime, it will help.
As well...as you heal, the feeling will lessen.

Curious how many times have you used the enemas in the past?

Maybe use a half enema at a time....be careful to not move the nozzle around too much, and make sure you're laying on your left side. Don't move for a half hour at the very least...so keep a garbage bag near you so that you're not having to move.

q

Posted 11/4/2012 8:34 PM (GMT 0)
Thanks quincy, wouldn't it be something if my GI would take half the time with me that you are!

I used the enemas for 6 weeks and bled/flared in amongst that six week time slot during my period, then I started using them every other night for a couple of weeks, then I got my period, didn't do them because I felt so sick, then I missed four in a row because of a trip and the thought was that maybe I was sensitive to them.

I know about laying on the left but it's a good reminder.

I'll give the half a try tonight.

I also will start a more detailed diary which I've been avoiding because I already spend so much of my time focusing is on this disease but maybe I'll figure out a trend or something.
Posted 11/4/2012 10:44 PM (GMT 0)
LOL..

Periods will definitely screw you up...it did me for sure. I did, however, have endo and fibroids, but periods were hell from day one anyway. When I got something it always seemed to be during/before a period and in bunches...(cold, vertigo, flare, PERIOD)..add the enemas, meds, etc...it was nice to have the period gone via hysterectomy.

Yes, I remember now your situation with the enemas...hope that the half will work.

Keep me posted.
q
Posted 11/4/2012 11:16 PM (GMT 0)
I started tapering prednisone if the urgency stopped and I was under 6 or so times per day. It usually took a month or so at 30 or 40 mg, then I could taper. It was unreasonable to expect to be 100% healed, that just never happened. Until Remicade.
Posted 11/5/2012 4:10 PM (GMT 0)
I agree with what Gary said but I also feel that just because you've healed 100% using prednisone, you may still wind up having trouble with flaring while tapering off. I think I am sort of reiterating what he said but, yes, if you taper too soon, things are much more difficult to keep controlled. I think you should just keep steady at your dose and you will continue to improve. When you feel like you're 100%, you can begin to taper. 25 to 5 in a few days is a huge improvement - I am happy you're able to watch the grandbaby.

Did your GI mention the plan for meds while tapering?
Posted 11/5/2012 6:12 PM (GMT 0)
I remember dealing with some nausea and even cramping after inserting an enema ... I sent straight to lay down with a heating pad over my abdominal area. I also practiced deep breathing exercises, particularly before insertion and after. It seemed to help. Eventually the nausea disappeared. I like Quincy's idea of using an anti-spasmodic as well as trying to use just half the enema until you feel better.
Posted 11/5/2012 6:18 PM (GMT 0)
My doctor says that once the inflammation is down that it usually takes about 6 weeks to go into remission. You're on the right track.
Posted 11/5/2012 9:21 PM (GMT 0)
This has been really helpful everyone. Thanks.

I barely managed almost half an enema last night. Breathe Breathe breathe! At four minutes, I thought no way, but I just breathed some more and it passed. Another bad wave at 10 minutes, Breathe, breathe, breathe. (Childbirth classes paid off now!) Whew, that was tough. You know, amazingly, I held it till early morning. I'll try again tonight. The anti spasmodic is on my GI question list.

I did see my GP today and he didn't have a lot to say, referring that he'd like the GI to take care of this but did agree to a prednisone taper. I will do my full 40mg dose tomorrow, then cut down 5mg every three days. He told me that if my symptoms flare up again, to hold the dose.

I had energy getting to my muscles today, would have been nice to have a nap, but got by without one. The dominant feature of the 5 BMs this morning was mucous. Urgency was there but I never lost bowel control. I am relieved beyond imagination. One thing at a time.

I'm offering a toast to you all with my bottled water, and to a long problem free remission for us all yeah

If anyone has more advice/suggestions, I welcome those too.
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