The flares keep me up at night!

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neondream
Regular Member


Date Joined May 2008
Total Posts : 47
   Posted 5/23/2008 11:31 PM (GMT -7)   
Ugh its always the worst at night! 3 bms all day, until about 9pm now its about 11:30. I've had about 6 and anticipating more. I hate being woken from a deep sleep to run to the bathroom! I ate by 7:30 too!

Anyways, I'm new to the forum and have a question.

I have been on pred since january, ranging from 40mg to 5mg daily. I was regularly off and on pred for the latter part of 2007. I know long term use isnt good for you, nor are all the lovely side effects, but how long is considered a long time? My current GI has no plans to stop the prednisone! (Im looking for a new GI in central california right now.)

Also, i bought distilled aloe vera juice today. It tastes like water, I cant imagine that its doing anything. The real unfiltered stuff is pretty hard to choke down though. It called "George's Always Active 100% Aloe Vera Juice". Anyone have luck with something like this or is the slimy, bitter stuff the way to go?
20. Female. California.
Diagnosed left sided Ulcerative Colitis at 15, first symptoms at age 11.
5mg prednisone daily. (now taking 20mg for flare)
Aloe Vera 3x daily
Fish Oil 3x daily.


quincy
Elite Member


Date Joined May 2003
Total Posts : 30067
   Posted 5/23/2008 11:45 PM (GMT -7)   
Hi..I think you should stop the fish oil and the aloe vera for now and see if that improves your symptoms...usually our guts are more quiet during the night and more active during the day. Not all of us can take the fish oils. Aloe vera can cause diarrhea.

You could consider to take a fibre supplement..one that bulks the stool to help slow down some of the bms.

Have you never been on any of the meds such as Asacol or any rectal meds?

Where exactly is your UC...throughout or limited?

You can do some reading on UC meds and discuss with your doctor to have him add them.

Curious how your diet is during the day?

Are you ingesting any artificial sweeteners? If so...stop them since it can increase bowel activity a lot.

You could get your doc to prescribe dicyclomine..it's an antispasmodic. For many it helps to tone down the spasming and ultimately help with some of the bathroom trips so you can get some sleep.

Rectal meds will help with that as well.

Welcome to the forum by the way.
quincy
*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


neondream
Regular Member


Date Joined May 2008
Total Posts : 47
   Posted 5/24/2008 12:02 AM (GMT -7)   
Thanks for the advice, its appreciated!

I had an allergic reaction to Asacol, and 6mp. So as of now, im not on any remission medication. I tried endocort enema before, no luck that i can remember, Its been about a year and a half.

I have had two doctors tell me i have left sided, and one doc said I have pan colitis. As much as I hate to admit it, its really time for another colonoscopy. Its been a few years. I need a new doctor anyways, Im seeing a pediatric GI and I will be 21 soon and then can't be seen anymore. Its for the best anyways, every time i flare he just writes me up for pred and i dont feel like he really listens to me.

As far as my diet goes, I've cut out most wheat (one piece of white bread occasionally) Im mainly eating rice, cooked veggies, chicken, soup, pretty bland I think. I did have a juice made with splenda today, i will lay off that. Everyone's guts are so different!
20. Female. California.
Diagnosed left sided Ulcerative Colitis at 15, first symptoms at age 11.
5mg prednisone daily. (now taking 20mg for flare)
Aloe Vera 3x daily
Fish Oil 3x daily.


quincy
Elite Member


Date Joined May 2003
Total Posts : 30067
   Posted 5/24/2008 11:50 AM (GMT -7)   
Still consider the rectal meds...the predfoam or similar will at least help somewhat with the rectal inflammation.

The fibre supplement will help bulk up the stool.

Do eat more protein, take your vitamins, calcium/mag vitamin D, zinc and whatever else is good for maintaining good health.

Does your doc take blood tests? Get your vitamin D and B12 checked.

Considering you've been on pred so often, maybe a bone scan should be on your list.

Do the homework and write questions to get the answers you need when at your next appointment.

keep us updated about the c-scope...seems you're due for it.
Hope you're able to find a new doctor..that could be a request to this doctor, to refer you to another doc.

quincy
*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 5/27/2008 7:09 AM (GMT -7)   
Hi Neon,

When I was in my horrible flare going 25 times a day the night was the worst for me. What helped me (pancolitis) was the rectal meds - hydrocortisone enemas and also for sleeping a heating pad helped me too, who knew? I took tylenol PM a couple of times but do not recommend doing that much, I had to a couple of nights just to sleep.

Hope you get better quickly!
Beth, 32 ~ small flare - hoping caused by aspirin
Major Flare Sept/Oct 07
UC dx'd 03/00 (Proctosigmoiditis); Pancolitis since 09/07
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Prilosec, Probiotics.
Minimal Change Disease (Kidney Disorder) dx'd 09/07 - partial remission since 03/08
Prednisone 5mg 1xday (tapered from 60 = ), Simvastatin 20mg 1xday, Diovan 160mg 2xday. Enalapril 20mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.  Do you have edema? If so, check your blood protien level!
 


CdnGuy
New Member


Date Joined May 2008
Total Posts : 5
   Posted 5/27/2008 1:21 PM (GMT -7)   
Hi, you might want to stop the Aloe Vera and see how that does.
The best piece of advice I can give is to try carrot and apple juice. Freshly juiced. Buy a juicer It's the best thing I've ever done.
I don't remember the last time I had trouble at night, I'd say easily over 10 years ago, and that was hell.
Try the juice I think it's the best thing, but start very slow, start with a third of a glass to half a glass and see how it does. Then try to work up to 2 glasses a day over several weeks.
Also try and cut out all processed foods and try drinking more water at least 8 glasses a day.
Hope this helps.
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