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Posted 4/3/2008 8:28 AM (GMT -7)
Day 7 on 40mg of pred and not much relief is coming my way.  I am scheduled to taper to 30mg tomorrow; however, I have a call into the doc since things are not improving.

I'm having problems retaining even a 1/2 bottle of Rowasa.  Could my body just be rejecting the Rowasa?

The cortifoam and I don't understand each other either!  I read and re-read the instructions and it says to dispense for 1-2 seconds.  That doesn't even come close to filling the tip of the applicator.  So I keep pumping it...  Thoughts???

Sleep last night was in broken bits of about an hour or so.  So today has been rough.  Yesterday I thought things were looking up - I was actually able to eat - which was probably the problem last night.  All of that bland chicken and rice going through the colon.  I will admit to a slice of cheese pizza for supper last night - I needed some FLAVOR!  Bland food and I don't get along well.

So, I'm playing the second guessing game.  I know that it's not specific foods that "hurt" me, but that any food "hurts".  So, do I eat what I crave?  Or go for the "good" food??

Sigh...

Pan-colitis and GERD diagnosed May 2003

Osteopenia diagnosed Feb 2006

Status:  Flaring :(

40mg pred, 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

Posted 4/3/2008 9:11 AM (GMT -7)
go for what you crave....I know what you mean- for me, it doesn't matter what I eat- the end result is generally pretty much the same! If it'll give you some short-term pleasure, hey why not? As long as you know what to expect. Also- is 40mgs the highest pred dose you've ever been on? I usually start at 60mgs- the one time I started at 40mgs it did nothing, & I wound up having to increase to 60mgs. yuk.


diagnosed with UC '02

meds-

Asacol- 8 tabs/day

Remicade infusions

Imuran- 100mgs/day

Culturelle

 

 

Post Edited (Eva Lou) : 4/3/2008 10:14:36 AM (GMT-6)

Posted 4/3/2008 9:18 AM (GMT -7)
Now I'm thinking Arbys! (Okay - the pred munchies have me wired for food!)

Yes, 40mg is the highest I've been at. I am concerned that it doesn't seem to be working as quickly as it used to... Still nothing back from the doc...
Pan-colitis and GERD diagnosed May 2003

Osteopenia diagnosed Feb 2006

Status:  Flaring :(

40mg pred, 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

Posted 4/3/2008 9:22 AM (GMT -7)
I hope he calls soon, your doc! Same thing happened with me- first time on pred it was started at 60mgs & it kicked my flare in the butt right away! The next few times I tried to start at 40mgs, & my flares kept going & going & going... Apparently that's fairly normal with pred- it loses effectiveness at a certain dose pretty quickly. I always figured the side effects would be there regardless if what dose I went on, it would just make you stay on pred longer, have a longer taper. Stinks. But I do love Arby's too! I've been able to put on weight lately, which has been SUCH fun! I'm eating a lot.

diagnosed with UC '02

meds-

Asacol- 8 tabs/day

Remicade infusions

Imuran- 100mgs/day

Culturelle

 

 

Posted 4/3/2008 10:05 AM (GMT -7)
Hmmm Arby's:)

This happened to me w/ pred. First time I took it 40 mgs did the trick in 2 days. The next time I took it I had to go to 60mgs. Hang in there!
Tabitha (Tab)

100mg Azathioprine, 2 Fibercon, Colazal-9 a day, Acidopholis Pearls, Nexium

https://www.healingwell.com/donate
Co-Moderator UC Forum

Posted 4/3/2008 10:15 AM (GMT -7)
I say go for what ya feel like eating!! I did last weekend. My kids were over and I ate a bag of peanut M&M's, knowing that the next 2-3 days would not be nice, but, I just had have them. As long as you know what to expect and you can live with what will happen, then why not I say!! Enjoy. Now you just made me hungery for pizza and a sandwich!! lol

<FONT color=#0000ff>Bad flares Guniess & hot wings
Generic Colazal, 2 2xday
Acidophilus Probotic 3 times/day

Posted 4/3/2008 10:39 AM (GMT -7)
Ew!

You guys have me cringing at the thought of those terrible fast-foods you're craving, but you know me I'm all about "you are what you eat" and how that processed stuff really only exacerbates symptoms blah, blah, blah. LOL!

Eat a bowl of blueberries, tons of antioxidants that your body really needs over the you guys mentioned above.

:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)

Posted 4/3/2008 10:41 AM (GMT -7)
LOL! I went for lunch with hubby to a local place we like. French dip and fries. Yum! I figured my plan of action today would be a larger lunch and a LIGHT supper - maybe that will help decrease the night time movements. But eating the tasty food was definitely a comfort - and I'll take any mental comforts I can right now. This afternoon may be rough - but at least I enjoyed lunch :)

I love those peanut M&Ms too. Strangely, I haven't been craving them this flare... Knock on wood.
Pan-colitis and GERD diagnosed May 2003

Osteopenia diagnosed Feb 2006

Status:  Flaring :(

40mg pred, 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

Posted 4/3/2008 10:47 AM (GMT -7)
Yeah the 60 mg before imuran was what he needed to try to bring things under control.....the 40 mg when he went on the imuran with a really slowwwwwwwwwwwwwwwwww taper ended up doing the trick. Before imuran though as soon as the tapering began and got to 30 or 20 things would flare up again.

The instructions for the cortifoam are wacky.....I need to pump that 5 or 6 times most times to fill the applicator....of course wait a few seconds too for the density of the foam to expand a bit too. If you pump too much then with the expansion it gets a little messy.

61 yr old male~Colitis 1st diagnosed Jan '05-cleared up within a few wks. Flared again in May '06 (now UC) & hospitalized 5/07-currently heading towards a remission. Osteopena of spine from prednisone DX 8/07  Oct 07 feeling quite normal most days.  150mg Imuran  Zero mg prednisone   12 Asacol, Lidocaine Hydrochloride Jelly 2%,multi vitamin, iron 1X day, DanActive, chewable calcium, fiber capsule 1x day, Prilosec 20mg, enalapril 10mg, glipizide 5 mg, zocor 40 mg, baby aspirin, (Fentanyl pain patch 50mg 72 hrs  Morphine Sulf 15 mg twice daily)Cortifoam enema every other PM, Canasa suppositiry AM, folic acid 1mg, Fosamax 1x month

Posted 4/3/2008 11:26 AM (GMT -7)
Blueberry muffins - maybe! The last time I ate straight blueberries (as tasty as they are) it was not a pleasant experience :( That gets me to thinking - CHOCOLATE covered blueberries!

I have been craving pineapple though. But thought that type of fiber might hurt too - but as long as I'm eating whatever I want (w/in reason and moderation), maybe I'll pick some up!

Glad to know I'm not the only one with cortifoam issues! It seems to be one thing that can get me through the painful hurdles in the AM.
Pan-colitis and GERD diagnosed May 2003

Osteopenia diagnosed Feb 2006

Status:  Flaring :(

40mg pred, 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

Posted 4/3/2008 11:39 AM (GMT -7)
Are there really chocolate covered blueberries?! I wish I could eat pineapple. So yummy but the ole tummy can't tolerate it.
Tabitha (Tab)

100mg Azathioprine, 2 Fibercon, Colazal-9 a day, Acidopholis Pearls, Nexium

https://www.healingwell.com/donate
Co-Moderator UC Forum

Posted 4/3/2008 12:03 PM (GMT -7)
eyes  YOU guys are relentless!!!!! LOL!

As far as the cortifoam goes, it's a little tricky at first but you'll get the hang of it.

:)

My bum is broken....there's a big crack down the middle of it!  LOL  :)

Posted 4/3/2008 12:52 PM (GMT -7)
I have always had foods that I could not tolerate and would make me flair,
but I have also read posts here where some folks think that specific foods do
not start their flares, I think that everyone is different, but for me ice cream
and salads were always a killer. I guess moderation is a good rule of thumb.
It is nice that I can tolerate them now.

-------------------------------------------------

yuckygut
diagnosed 1998
now off prednisone and colozal
drink 1 Haldi daily
Posted 4/3/2008 4:31 PM (GMT -7)
Shake the Cortifoam canister well before squirting into the applicator. It should then expand quickly. RE milkshakes-- why not make yourself a healthy shake at home using the blender? Fast food is such crap! I disagree strongly with the notion that what a UCer eats doesn't matter to his/her well-being. After a person has UC for a while it thins the mucosa-- so even if you crave something greasy, spicy, or loaded with sugar you should avoid it & pursue reasonable alternatives, to spare your colon the needless irritation. It's very American to think that fries, shakes, burgers, Cokes or Pepsi, pepperoni pizza, etc. at a chain make life worth living-- a kind of obsession with junk. Not that I didn't eat this stuff myself in the past, but I got over it & no longer miss it-- and my guts do much better w/o it!!!!!! Princesa makes this point many times in her posts: people do not NEED this stuff to enjoy a good time. They just resist changing. / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])
Posted 4/3/2008 4:44 PM (GMT -7)
Let's all remember we are here to be supportive & not to place judgement on what someone choses to or not to eat!
Tabitha (Tab)

100mg Azathioprine, 2 Fibercon, Colazal-9 a day, Acidopholis Pearls, Nexium

https://www.healingwell.com/donate
Co-Moderator UC Forum

Posted 4/3/2008 5:24 PM (GMT -7)
There are chocolate covered blueberries and strawberries! Target carries a very tasty line - in dark chocolate too! Maybe cherries as well...

I did make a milk shake at home for supper - and it tasted supurb :) I don't much care for the fast food shakes as they are made with soft serve and not actual ice cream. If I'm going to have one, I want the tastiest one out there - no less than actual ice cream made with real ingredients.

Feeling well so far. I'm hoping the small amount of food for supper will keep the night "happy". This lack of sleep - along with the pred issues - is making life tough.

The nurse called back and I see a nurse practitioner on Monday. Sticking with the 40mg until then. If I'm not improving, a new plan should take form.

I'm trying to keep the spirits up despite it all.
Pan-colitis and GERD diagnosed May 2003

Osteopenia diagnosed Feb 2006

Status:  Flaring :(

40mg pred, 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

Posted 4/3/2008 7:29 PM (GMT -7)

Oh wow -- chocolate-covered strawberries are the best! Strawberries are my favorite fruit. Chocolate-covered blueberries sound great...will have to check those out.

Hope your night is better tonight, dakotagirl, and that you can get some rest.

24 years old
Diagnosed with UC March 2007; yet to go into complete remission
Asacol 4 tablets 3x/day

Rowasa (generic) - nightly; Canasa (1,000 mg) in the morning

Nature's Way Primadophilus Reuteri 2/day; Chewable multivitamin; Metamucil; Viactiv

Posted 4/3/2008 8:17 PM (GMT -7)
I very reliable doctor once told me that all the research he's ever seen on "fat-free, no sugar, etc." dieting/lifestyle shows a very minimal effect of life expectancy. Now he wasn't talking about moderate "diets" like you eat healthy most of the time but will have that cheesecake on occation, he's talking healthy eating for the rest of your life. Anyway, research shows that it only adds an average of an extra three years to your life--so if your 90 and want to live to 93 go for it, but, know cheesecake is not in your life plan. Personally, I don't want to think about living the rest of my life without the possibility of another slice of cheesecake.

Please feel free to substitute cheesecake for your favorite unhealthy "food"
Dx Ulcerative Colitis 1999; IBS; GERD; CP: Asacol x3 x3/day, Rowasa, Proctofoam, Prilosec, Prozac, Endocet (as needed), multi vit, probiotic, fish oil, calcium 1200 mg./day, Prednisone (off/on, unfortunately).

Posted 4/3/2008 8:50 PM (GMT -7)
When my flare was really bad, it made no difference what I ate. Whether I ate nothing or fetuccini alfredo, I was sick as a dog. So I ate whatever I wanted. When the flare began to moderate a bit, I was able to identify certain foods that hurt. Now I eat everything I ate before. I think I have a touch of IBS also, as I've always had to pay a price for too many legumes or too much fatty food.

I wouldn't do the fries, but I'm in line for the milk shake!
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


Posted 4/3/2008 9:45 PM (GMT -7)

BigLucy said...
I very reliable doctor once told me that all the research he's ever seen on "fat-free, no sugar, etc." dieting/lifestyle shows a very minimal effect of life expectancy. Now he wasn't talking about moderate "diets" like you eat healthy most of the time but will have that cheesecake on occation, he's talking healthy eating for the rest of your life. Anyway, research shows that it only adds an average of an extra three years to your life--so if your 90 and want to live to 93 go for it, but, know cheesecake is not in your life plan. Personally, I don't want to think about living the rest of my life without the possibility of another slice of cheesecake.

Please feel free to substitute cheesecake for your favorite unhealthy "food"

personally for me it quality of life, not quantity and if eating only healthy gives me quality I could honestly care less about quantity...this is just my own personal opinion, possibly because I feel like I became a burden at way too young of an age, I couldn't imagine wanting to live into senior yrs.

:)

My bum is broken....there's a big crack down the middle of it!  LOL  :)

Posted 4/4/2008 6:49 AM (GMT -7)
yeah but we could all get hit by a bus tomorrow...LOL Personally it is whatever floats your boat and makes you feel better. Short term, long term whatever you feel is best for you.
Crohn's Co-moderator

We will find a way, or make one.-Hannibal (crossing the Alps in the 15th Century on war elephants)
Praise in public, chew in private.
Make sure your suffering has meaning....

____________________________________

All suggestions/options/opinions are caveated with please consult with your local health care provider...

Posted 4/4/2008 10:11 AM (GMT -7)
I agree, quality of life! I'm not alover of fast food, per se, like McDonalds, BK, places like that... but settle me down with ice cream, or chocolate, & I'm doing fine! I enjoy food too much to restrict it- good & bad food- if I had to be vigilant about what I ate for the rest of my life, that would compromise my quality of life immensely. Anyway, hope you are doing better, dakotagirl!
diagnosed with UC '02

meds-

Asacol- 8 tabs/day

Remicade infusions

Imuran- 100mgs/day

Culturelle

 

 

Posted 4/4/2008 11:01 AM (GMT -7)

MMMNAVY said...
yeah but we could all get hit by a bus tomorrow...LOL Personally it is whatever floats your boat and makes you feel better. Short term, long term whatever you feel is best for you.

I know, that's why I said personally for me it's quality not quantity...If I got hit by a bus tomorrow (which would almost be impossible cuz where I live there are no busses) then I'm okay with that personally...I veiw life kinda different...everyone's always so freaked out about death and dying, not me, it doesn't freak me out at all but alot of people think I'm weird for feeling that way and I think they're weird for being afraid.

To each there own :)

My bum is broken....there's a big crack down the middle of it!  LOL  :)

Posted 4/4/2008 12:58 PM (GMT -7)
the frosty shake at Wendy's and dip their fries into it, it is really good! sorry for all the difficulties w/pred! are you feeling any better?
Beth, 32 ~ Major Flare Sept/Oct 07 ~ in remission

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 25mg 1xday (taper 5mg a week from 60 = ), Simvastatin 20mg 1xday, Diovan 160mg 2xday. Enalpril 10mg 1xday, Fursomide 20mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.  Do you have edema? If so, check your protiens!

Pre-Diabetic from Prednisone use - Low carb/sugar diet & exercise.

Posted 4/4/2008 2:42 PM (GMT -7)
The frosty and fries from wendy's is a classic! They should sell it in a combo :)

Not feeling much better. That's depressing. It really makes me wonder what the next step is - I'm not living like this for months! It's been two weeks already and I'm tired of answering "you're still not feeling well?" from all of those well meaning (but unknowing) people at work.

I took off early and my boss said something about hopefully having this beat by Monday. I told him I hope so, but I can't guarantee anything. I did tell him I have a chronic condition - no one can miss the pale face and worn look right now - but I haven't given specifics. I'll see how things are on Monday.

I "light" supper idea didn't work. I guess I'm just at that point where the flare is so bad that it really doesn't matter what I eat. I know that things will get better - they do! But my patience is wearing thin...

Oh - another pred side effect HIT me last night. Muscle cramps. My legs were spasming and nothing I could do would get rid of the tightness. I still don't want anyone touching me - so massage is out for now. My left lower back feels like concrete. I guess I'll see what the little massager I have can do - hopefully without vibrating everything out of my guts!

I hope y'all have a good weekend! It's pouring rain here - lovely cold front coming through - which means the weekend should be temperate with little humidity! Thank goodness!
Pan-colitis and GERD diagnosed May 2003

Osteopenia diagnosed Feb 2006

Status:  Flaring :(

40mg pred, 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

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