Just an update...HELP WITH QUESTIONS PLEASE!!!

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Taben
Regular Member


Date Joined Jan 2006
Total Posts : 147
   Posted 3/24/2008 10:25 AM (GMT -6)   
Took off Friday and so I had three days in the bathroom and in bed. This is my first flare up since I was diagnosed in 2005. This sucks!!! I am going almost every hour and the "red" is not there much at all like last week and most mvmts. are light. I do have boughts where there's gas and boy that's can be a painful mvmt. (kinda feels like a hot dagger going through your tubes!) and then there's not much or the kind of mvmt. where you tense up your back is sore the rest of the day. JOY!



Well, I am eating basically a very, very bland diet of instant mashed potatoes, single serve mac and cheese w/o cheese, brown rice, Live active piece of cheese daily, jello, crackers, and that's pretty much it. I am not lactose intolerant but think I had a mvmt. after eating some cottage cheese. So, there goes that easy to digest food. Is there anything else I can include? I am calling the doctor today to see if he wants to call out the dreaded, evil, I HATE THE DRUG...PREDNISONE! Maybe, since there's not much if any "red" in the stool, this flare up isn't as bad as the last one and he won't put me on the same dosage. I think I was on 25 Mg. before and talk about the side effects!!! THAT WAS HELL!



So, do you get the side effects no matter what dosage of Prednisone you are on?

**Please limit signature to 10 lines or less.**

What helps with the gas? Maybe it is the IBS which he said I have a little of. HELP!!!



Thanks. TAMMY

Post Edited By Moderator (tjf) : 3/24/2008 2:35:34 PM (GMT-6)


hekela
Veteran Member


Date Joined Nov 2006
Total Posts : 731
   Posted 3/24/2008 11:45 AM (GMT -6)   
ugh, sorry you're in so much pain.

to go on prednisone or not is ultimately your decision. if you feel like you need it at the moment then just do it and get it over with. but if you want to try something else or wait it out (if you feel like you're getting better at all) then let your doctor know. i don't know one way or another, but i would think you'd get the side effects no matter what the dosage.

you can try toast, maybe peanut butter if you think you can handle it. everyone is so different but i know some people wouldn't be doing well with the potatoes. bananas help some but not everyone. i like cooked apples if you do okay with fructose.

one thing i love to make is homemade ramen noodles. it's the asian noodles that are all curly, just don't use the seasoning packet. i cook them in chicken broth (mine is organic with no msg) and add a splash of soy sauce or bragg's if you can handle that. then it's nice and warm and salty but not too salty like the packet makes it. if you think you could handle it, do a couple drops of sesame oil in there but that is pretty strong tasting stuff. might not sit well.

don't know about the gas. i know there is stuff out there but the only one i've used is immodium that has something in it for gas also. but immodium doesn't touch my UC. it only helps if i'm having food related diarrhea, not UC D.

anyway, hope you're feeling better very soon tho!
29, happily married, stay at home mom to 2 year old son. due to have baby #2 9/17/08
UC (probably pancolitis, but no c-scope yet), diagnosed June 2006, started having major symptoms sometime in January 2006, about 3 months after childbirth. 2nd flare (minor) may 2007 after taking caprylic acid for 2 weeks.

-Prednisone 8/28/06-2/28/07. and again may '07, 8 week course.
-Prayer! asacol, probio, ground psyllium husk, prenatal, folic acid, cal-mag

may you live all the days of your life.


Taben
Regular Member


Date Joined Jan 2006
Total Posts : 147
   Posted 3/24/2008 12:25 PM (GMT -6)   
HEKELA...



Thanks for your reply. Ramen noodles, kinda like what I do with the single serve mac and cheese and just don't use the cheese but some spray butter of course. Good Idea. Just got a call from the doctor and yep, 40mg. of Prednisone, here we come! LOL : (



Got to get it soon! I just hope that it starts to work soon. Just have to say a prayer and wait it out. Love these flares!!!



What the heck is caprylic acid. WOW! That scares me just to hear about it. LOL



Congrats on the soon to be baby!!! Boy or Girl?

****Please limit signature to 10 lines.***

Post Edited By Moderator (tjf) : 3/24/2008 2:35:08 PM (GMT-6)


quincy
Elite Member


Date Joined May 2003
Total Posts : 30373
   Posted 3/24/2008 2:25 PM (GMT -6)   
Hello......tell me why you're not trying rectal meds????

q
*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 !!!


Midnitenz
Regular Member


Date Joined Mar 2008
Total Posts : 31
   Posted 3/24/2008 2:38 PM (GMT -6)   
Heh Taben - I am sorry to hear you having so much pain - it's a nightmare when you get that.
Just reading with what you are eating......thats alot of processed foods there....
But I am a believer in food here - so my experience when I used to get the pain - I backed off anything like that....
Quincy is right also - ask about the rectal meds since you are having so much pain.
But with food - I would stick to plain non acid foods....Toast - crackers - bland as food - not sure if you have it there (wherever here is) but I used to drink ALOE VERA juice also in the morning.
I do hope you get better soon....take care and keep safe.

Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 3/24/2008 2:45 PM (GMT -6)   
I agree w/Quincy on rectal meds, you need to ask your Doc for those, I took hydrocortisone e's and in about 2 weeks I had much improvement, more so than the pred did for me. For the side effects on the pred.

When I first went on it, had hot flashes, moodiness/crying, that I believe is your body reacting to getting this large amount of prednisone. That went away in 2-3 mos. Three months later is when I got the weight gain, moon face and everything else. Watch your salt and refined carbs on pred and you should be ok w/the moon face and weight gain.

The way I look at it, the foods are not going to heal your colon, they may help in not aggravating it further but you need to call your GI. ~ Some may not agree that is just my opinion.
Beth, 32 ~ Major Flare Sept/Oct 07 ~ almost in remission
UC dx'd March 2000 (30 cenitmeters as of 2005-proctosigmoiditis)
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 Sept 2007 - partial remission since 03/08
Prednisone 30mg 1xday (taper 5mg a week from 60 = ), Simvastatin 20mg 1xday, Diovan 160mg 2xday. Tekturna 300mg 1xday, Fursomide 20mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.
Pre-Diabetic from Prednisone use - Low carb/sugar diet & exercise.


Midnitenz
Regular Member


Date Joined Mar 2008
Total Posts : 31
   Posted 3/24/2008 3:01 PM (GMT -6)   
Food will not heal it - but during flareup - I would watch what I eat so I don't aggrevate it anymore - it's working hard enough now dealing with the flareup, heavy glunkie foods sitting in there wont help.

hekela
Veteran Member


Date Joined Nov 2006
Total Posts : 731
   Posted 3/24/2008 3:49 PM (GMT -6)   
hi tammy,
well hopefully the pred will work quickly for you if you decide to go that route.
caprylic acid is found in coconut and is a natural antifungal. works for some but not for me!!

i do agree with the others above as far as food not healing me. but it doesn't sound like that's what you're aiming for. sounds like you're just trying to not make things worse by eating things that seem to bother you. that's all we can really do sometimes.

don't know yet if we're having a boy or girl. my son thinks it's a girl. :)
29, happily married, stay at home mom to 2 year old son. due to have baby #2 9/17/08
UC (probably pancolitis, but no c-scope yet), diagnosed June 2006, started having major symptoms sometime in January 2006, about 3 months after childbirth. 2nd flare (minor) may 2007 after taking caprylic acid for 2 weeks.

-Prednisone 8/28/06-2/28/07. and again may '07, 8 week course.
-Prayer! asacol, probio, ground psyllium husk, prenatal, folic acid, cal-mag

may you live all the days of your life.


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 3/24/2008 4:29 PM (GMT -6)   
You may want to be careful with the ramen noodles. If you check the labels on them, they're extremely high in both salt and fat. If you're having D., eating heavily salted food can contribute to dehydrating you. And the fat level means that they really aren't easily digested.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Colazal,  Remicade, Nature's Way Primadophilus Reuteri.
In remission since April, 2006. Remicade has been my wonder drug.
 
Co-Moderator UC Forum


quincy
Elite Member


Date Joined May 2003
Total Posts : 30373
   Posted 3/25/2008 2:49 AM (GMT -6)   
Eat as well=balaced as you can....definitely eat protein! Small meals, but often..like every 2 - 3 hours of your awake day.

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 !!!


Taben
Regular Member


Date Joined Jan 2006
Total Posts : 147
   Posted 3/26/2008 12:18 PM (GMT -6)   

Hey guys...Well, the Prednisone is helping quite a bit and I haven't had the BAD mvmts. from hell like I did before.  Granted, they two larger ones are not a bed of roses but don't compare.  As far as what I have been eating, mashed potatoes w/some salt for flavor and light butter (not much at all, bananas, pasta w/some butter for taste, jello, crackers, brown rice, toast, popsicle maybe.  That's really about it.  I think it is a plain diet while on a flare.  Can we eat strawberries and pineapple or even applesauce?  I have all three of those items.

Quincy:

I don't want rectal meds!!!  LOL  Tushy sore enough and just don't want to deal with the mess.  Thanks for mentioning it though.  Will be calling the doctor today to let him know that the pred. has lessened the frequency and of course am still going but no where near as much.  Was on the same meds. as last time in 2005.  I appreciate you writing and all your tips and advice.  Unfortunately, we are all in this for the long haul forever!  : (

 

 


[~Tammy~
 
Diagnosed with UC/Pancolitis Dec. 05
 
MEDS:
Imuran: 1 daily 50 mg.
Zoloft:1 daily 50mg.
Lomotil: 3 per day
Colozal: 9 per day
Ferrous Sulfate (Iron): 325mg-4 per day (Iron a little low and trying to build back up)
Prednisone: 5 mg-Tapering-every other day
Librax-3 per day before you eat for cramping
 
Try to keep positive and have faith!


quincy
Elite Member


Date Joined May 2003
Total Posts : 30373
   Posted 3/26/2008 12:39 PM (GMT -6)   
Interesting what we'll risk. Pred has a high risk of permanent side effects compared to the rectal meds.....

REmember you'll have UC for the rest of your life. maybe worth a try?
Even suppositories are better than nothin...will help your sore tushie!

hope you feel better soon.
*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 !!!


Taben
Regular Member


Date Joined Jan 2006
Total Posts : 147
   Posted 3/26/2008 1:42 PM (GMT -6)   

QUINCY...

Hmm? Will take your adivce and think about that.  I am still new to this and the rectal meds I have heard are very hard to deal with, messy and can make you have a mvmt. once again applying.  Don't know if that is really true but the thought of putting something where it shouldn't be especially when sore just isn't the best choice of action at the moment right now.  LOL

Yeah, I know, for life...TOTALLY SUCKS!

 

 


[~Tammy~
 
Diagnosed with UC/Pancolitis Dec. 05-Flaring again Presently!
 
MEDS:
Imuran: 1 daily 50 mg.
Colozal: 9 per day
Prednisone: 20 mg 2x a day
 
Try to keep positive and have faith!


quincy
Elite Member


Date Joined May 2003
Total Posts : 30373
   Posted 3/26/2008 5:14 PM (GMT -6)   
But, you're still posting you're needing help ....you're on the start of big-gun meds...why not try the little guys?

I'd rather a sore butt for half a second while putting something up there that can help rather than a sore butt continually....let alone trying to taper off pred...what then ?

I'm positive you need to have a little faith in something you should be trying.

Big question...
what do you have to lose?

q
*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 !!!


Midnitenz
Regular Member


Date Joined Mar 2008
Total Posts : 31
   Posted 3/26/2008 5:21 PM (GMT -6)   
Hi Taben.
I do hope you are feeling a little better - we all know what you are going through.
I know people are going to jump on me with saying this - but I am concerned about what you are eating will you are going through this
.

mashed potatoes w/some salt for flavor and light butter
Although soft and easy to prepare - it's full of preservatives and what ever else they put in instant mashed potatoes (dont think we have them here yet)  I wouldn't do it.
not much at all, bananas, pasta w/some butter for taste
A banana is good - as have potassium which u will be losing ( not sure if u have them there - the "little finger" ones are the best for it.....pasta again would stray from (more carbs) leave out the butter completely - I know for taste - but main thing is to make u feel better first.
jello - I assume this is "jelly" yes/no - if so - then fine - breaks down easily in the body.
crackers - plain as crackers with no topping - so no seasame seed ones - nothing.
brown rice - I wouldn't do the rice in big amounts - another carb - actually I just woudnt do it.
toast - if anything, if the only choice you have is between toast/pasta/crackers/rice - GO WITH THE TOAST - plain toast - put the banana ontop (crush it) add a little bit of sugar or cinamon ontop if you really have to have something with taste.
popsicle- Sorry (different countries throw me out) that would be like a ice-block?  Frozen liquid on a stick??? If so - yes - eat those - but only lemonade ones - nothing with colour.....this will keep fluids up to a point.
I fully understand how painful this all is - and like "quincy" said - small amounts every couple of hours.
When my stomach is like that - I pull back to the very basics - to allow it to settle - I remind myself (while all this is happening) my insides are raw and struggling - why would I want to add to the problem with putting certain foods in there, it's already working over time now.
I am not telling you off or anything like that Taben - and yes - everyone is different - but this is what I would do....So once again as you know - completely your choice.
FRUIT as in orange - apple (unless its cooked), strawberries - dont do - acid acid acid....
Banana's are fine but not like 5 per day.
Scrambled eggs - just think "light and fluffy" just for a couple of days...until it settles...
Ok I will stop waffling now...just worried that's all.
 

dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 3/26/2008 5:26 PM (GMT -6)   
Yes, using the rectal meds is a tough emotional decision. It took me a couple of days of looking at the Rowasa to even consider it. The Canasa was much easier - you don't really have to worry about the suppository. But I'm glad I used the Rowasa (It took a virtual kick in the butt by Quincy though). When this flare started, I turned to the Rowasa. No big improvement, yet. But my choice is no pred - ever again. It's severely damaged my body and I won't put family and friends through the emotional rollercoaster again.

It's all up to you, but definitely THINK about it.
Pan-colitis and GERD diagnosed May 2003
Osteopenia diagnosed Feb 2006
Status:  Flaring :(
 
Asacol 12 per day,  Azathioprine 75mg, Rowasa, Canasa, Aciphex, Forvia, and Pro-Bio
 
Co-Mod for the UC forum:  Keep HealingWell running smoothly:  www.healingwell.com/donate


munchkindd
Regular Member


Date Joined Oct 2007
Total Posts : 348
   Posted 3/26/2008 5:31 PM (GMT -6)   
You would really be surprised how much the rectal meds can help. It may not seem to help much the first few times, and may be hard to retain. But, you will get better at them and see a vast improvement. I was kinda grossed out with them at first, butt...............it sure does help and I don't really give much thought to it now, I just do them. It's your choice, nobody can make it for you. We can all just tell you what has worked for us, and most of us have had UC a long time.............Good Luck!!
*******Donna*******
 
diagnosed with uc 27 years ago.  Enojoyed 10 - 12 year remission (approximately 10 of those years without any meds)
 
currently on Sulfasalazine 2 tabs 3x day. Folic acid, mesalamine enema every 3rd night, will try to spread it out more. Omega 3, Probiotics, multi vitamin, cacium supplement, Biotin....
 
In remission since Jan 2008, can't believe it.............


braillegirl
Regular Member


Date Joined Jan 2008
Total Posts : 66
   Posted 3/27/2008 6:12 AM (GMT -6)   
I would use the rectal meds anytime before pred. I hate pred. but as I was stupid and did nothing when I first had symptoms my UC is severe. The pred is kicking it in the butt right now, and I will NOT wait again when I have symptoms. I am getting a stockpile of rectum meds right now!
Really you get used to the rectal meds and they are nothing. Use a little KY jelly on the tips that will help with the sorness.
jan
 DX: 1993: sulfasalazine; 1998: Pancolitis UC. asacal 2 2X daily, cortifoam,; 2003: Protitis UC severe flare. asaca 2 2X daily, canasa, cortifoam, cortenema
2008: Proctosigmoiditis severe flare. asacal 3 2X daily, canasa/discontinued while on pred, cortifoam/discontinued, Prednisone 40 mg to be tapered each week
Back on Prednisone 30 mg for 2 weeks then taper to 20 mg then we'll see. Back on Canasa at night.

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