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02-10-2010, 09:59 AM   #1
Guestly
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Scary Pred Munchies!!!

Dear oh dear!!!

I have barely eaten in about 4 months, existing on a diet of ensure and grilled fish...

Been on the pred about five weeks, start the taper next week, and aside from manic cleaning and insomnia no other side effects...

Until yesterday!

I went to a church coffee morning with my sister, so I bought 12 rice crispie cakes for the kids, they'll love em I thought to myself. But I got home and inhaled the lot!!! Then I ate 5 of my sons gluten free chocolate wafer bars, 4 slices of gluten free toast with jam, some left over chilli, and a left over sweet and sour chicken dinner.... And four ensures....

Today I have had 3 ensure, a jacket potatoe with left over chicken curry on it, 4 more of my sons bars, a huge slice of fritata, and now I'm eyeing up the toast again...

My poor stomach is screaming - the shock of nothing for months and now this.... Not only that but all ludicrous foods for a crohnie to be stuffing down their neck...

Oh I forgot to mention I also finished off my husband's jar of jelly beans, and three bags of chocolate buttons...

I'm parked outside the school to collect the kids and frankensteining as I type this on the iPhone, coz my bum absolutely HATES me now... No way I am going to the gate to collect them, the kids are just gonna have to follow their noses to the stinky car because it's just not safe to move....

Any recommendations? I'm killing myself here - it's like a madness has taken over me. I woke up in agony this morning and swore I wouldn't be so stupid again... Next thing I knew I was at the fridge...

I'm not overly concerned about weight gain, it's not a vanity thing. It's just that it hurts!!!! Why can't I stop????

Do you think it would be worth starting the taper now? Afterall my flat couldn't be any cleaner than it already is!!!!

This is the strangest thing I have ever experienced. My belly is stetched and sore, my butt is twitching non stop and yet all I can think of is what can I cram I to my mouth??? I feel soooo sick!!!!

Any tips gratefully received!

Lishyloo x
02-10-2010, 10:49 AM   #2
farm
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I almost ate the door off the refridgerator to get inside!
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02-10-2010, 10:56 AM   #3
imisspopcorn
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Oh Lishy....I hate Prednisone. I'd find myself thinking about what was in the refrigerator while I was still chewing the last thing.....I would usually try to drink something warm like tea....it had to be sweat. It would somewhat satisfy the intense cravings....I still have about 15lbs of Pred. weight to lose. So be careful.
02-10-2010, 11:00 AM   #4
nogutsnoglory
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I was waking up at 4am to raid the fridge when I was on pred. How long have you been on it, PLEASE do not go past 2 weeks the side effects are devastating short term and long term.
02-10-2010, 11:04 AM   #5
farm
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2 weeks? I'm always on a 9 week stint when I have to go on Pred.
02-10-2010, 11:07 AM   #6
imisspopcorn
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I was on it for about 5 months post-op.......Fat city
02-10-2010, 11:11 AM   #7
farm
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Same here, after surgery I was on it for about 6 months; then switched to Entocort.
02-10-2010, 11:21 AM   #8
Sue-2009
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Prednisone is something we have a love/hate relationship with. Its just a bad relationship..going no where. I don't have much info to help, but I feel for you...Sue
02-10-2010, 11:56 AM   #9
Guestly
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I've been on it 5 weeks now, so far apart from being a loony I was fine, I actually list weight - I think it was all the dusting and manic cleaning of windows at 3am!!!

I just looked in the mirror and realise that I have also turned into a hamster literally overnight! HUGE FURRY cheeks!

So I have one more week on the full dose and six weeks tapering.... God I hope the appetite fades with the taper! I'm like a woman possessed!

If I lived on my own I would just empty the fridge to save me from myself, unfortunately I have to keep stuff in for the kids.... Although at the rate I'm going there isn't much left for them....

Gotta go, I've just remembered there are Frosties in the bottom of the larder!!!

I hope I regain control before Easter or the kids are going to have a battle on their hands to keep their eggs!!!
02-10-2010, 12:05 PM   #10
fenway1971
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I was on pred for 9 months and singlehandedly kept 4 nearby restaurants and the local deli in business. 5 meals a day was the norm...with snacks in between.

It does go away over time though.
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02-10-2010, 12:12 PM   #11
imisspopcorn
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One of these days, when my pride is gone I will post my pred. face pics. It hurts too bad to look at them now.....We went camping and I had this huge puffy coat and was wearing a knit ski hat.....I swear I looked just like the Michelin tire guy.
That's me, only he is much cuter...Cheer up Lishy!
02-10-2010, 12:13 PM   #12
farm
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Gotta go, I've just remembered there are Frosties in the bottom of the larder!!!
What? LMAO!!!
02-10-2010, 12:14 PM   #13
fenway1971
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imisspopcorn said:
One of these days, when my pride is gone I will post my pred. face pics. It hurts too bad to look at them now.....We went camping and I had this huge puffy coat and was wearing a knit ski hat.....I swear I looked just like the Michelin tire guy.
That's me, only he is much cuter...Cheer up Lishy!
Hey, Pop. Where'd you get that photo of me?

Damn, I hated pred.
02-10-2010, 12:15 PM   #14
imisspopcorn
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Fen, you and I need to make appointments at the tanning salon.....
02-10-2010, 12:31 PM   #15
ChefShazzy
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I know just what you are going through, lishy, I too am up all hours of the day and night raiding the fridge. I have snacks in my purse no matter where I go, because when I'm out I need to have something in reach or else I will end up going through the drive-through. So many times, I will be full yet hungry... and I get such bad stomach pains, cramps, gas, bloating...

I try to minimize the 'bad' snacking (junk food), and have lots of washed, cut fruit ready at hand... Yogurt instead of ice cream (most times )... Try to make the best you can out of it.
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02-10-2010, 01:49 PM   #16
Rob
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Thank god i thought was jus me bein stupid

I've been on pred since august last year an since about oct all I wanna do is eat...
no matter how much it hurt etc I'd still crave food, then they put me on hydrocortiscone for past week n half an things jus went mentle
back on pred now but still can't get enough
luckily in here I havnt got access too a fridge or pantry or I'd be stuffed I've put on so much weight in past two weeks it's not funny

and now they got me fasting for my flexoidsigmoscopy. Aaaaaaaaggghhh!!!
My pillow us starting too look tasty ATM lol
02-10-2010, 02:27 PM   #17
Mountaingem
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ROTFL Rob! Me, too! I find if I eat proteins rather that sweets/bread that I'm craving it helps. Having said that, I ate a whole box of Hostess Zingers this morning lol. I barely slowed down for the wrappers!
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02-10-2010, 03:01 PM   #18
Astra
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pissing my sides laughing at this! lol
My cheeks are hurting from copious amounts of Fruitella chews and fruit pastilles!
But ya know wot? I DON'T CARE!!!
I haven't eaten this well for years! And keeping it in!
It's the bloody insomnia I can't cope with, I was watching Pulp Fiction (my all time fav fillum) at 3am, then wide awake again at 7am!
Start tapering off next Monday after 28 days on Preds, and I think I'm going bald!
Never mind, I'll just walk on me hands, cos got a nice bushy beard going on!
Lotsa Luv
Just call me Alvin! xx
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02-10-2010, 03:13 PM   #19
Misty-Eyed
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I literally cry when anyone even mentions going on that evil drug. Luckily (well, not that luckily) I still have osteoporosis from the last 7 years from being on it so I just remind them that it probably wouldn't be a wise idea...

As to tips... could you cut down on the ensures? I only really take them these days when I loose my appetite. Other than that.. I'm not sure there is anything to do. Even when I was feeling full to the brim I could still eat a horse.
02-10-2010, 03:36 PM   #20
shazamataz
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if it helps, Lishy, my experience has been that down to about 30 mg I was constantly hungry but after that I lost that appetite. Now I actually struggle to eat at all and have trouble keeping on the 4 kg I managed to put on!

It is amazing how hungry it makes you. I was eating twice as much as I normally would before Crohn's and as soon as i finished a plate of food I was looking for more!

I never got the big cheeks, but definately got the hairy part and hate that as it's still there!
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02-11-2010, 12:05 PM   #21
nogutsnoglory
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Misty brings up a very pertinent point the amount of bone loss that occurs from Pred. I was on it for about 6 months? and now have osteopenia the beginning stages of osteoporosis. I can't know for sure but it is likely the fault of that damn pred.
02-11-2010, 12:08 PM   #22
CrohnsHobo
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I have been on Pred many times over the years with no bone problems.

This last go around was bad with the Pred 'see food' diet. I dropped to 20mg last Tuesday and it has stopped. At 30 and 40 a day I was non-stop munching. Managed to put on 10 pounds in less than a month, but have not put on anymore and now back to an almost normal weight for me.
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03-19-2010, 05:09 AM   #23
shooty
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I'm likely going to be starting pred on Sunday after they gave me 48 hours to see how I was, but the appearance of bloody, loose stools has pretty much killed my hopes of avoiding the pred. It's sitting in my kitchen at the moment laughing at me. It'll be my first time on the stuff having had crohn's for 10 years, so that's a small victory for me.

I'm not actually as concerned as I was before finding this forum. Having read the listed side effects that came with the preds I'm pretty sure there's something on the list for me. Let's just hope it's insomia and boundless energy because I'm already a moody, tetchy sod. It is comforting to see some have had little negative effect but I feel sorry for those of you that have suffered with it. Hope it's not me aswell.

Luke
03-19-2010, 06:44 AM   #24
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Hi, Luke
I must have missed this thread first time round. It's nearly 40 years since I was on pred, but all of the side effects seem familiar. However, the boundless energy and insatiable appetite were a welcome change after being bedbound and dangerously underweight. I channeled all that energy into writing a book... wrote about quarter of a million words... and never had the energy or the inclination to finish it since then, heh! heh!
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03-19-2010, 07:39 AM   #25
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shooty said:
I'm likely going to be starting pred on Sunday after they gave me 48 hours to see how I was, but the appearance of bloody, loose stools has pretty much killed my hopes of avoiding the pred. It's sitting in my kitchen at the moment laughing at me. It'll be my first time on the stuff having had crohn's for 10 years, so that's a small victory for me.

I'm not actually as concerned as I was before finding this forum. Having read the listed side effects that came with the preds I'm pretty sure there's something on the list for me. Let's just hope it's insomia and boundless energy because I'm already a moody, tetchy sod. It is comforting to see some have had little negative effect but I feel sorry for those of you that have suffered with it. Hope it's not me aswell.

Luke
Dont worry Luke, most people don't like Pred, but for the most part it does help until you taper to 20mg and under, only good for a short term to replace a longer term drug. Having a baseline bone density is important. As we get older or female changes we need lots of calcium and Vitamin D to help reduce bone loss. I know the side effects, moody and insommnia , and want to eat and everything tastes bland... but the important factor here is controlling the disease first. Give it a go.
03-19-2010, 08:59 AM   #26
shooty
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Jettalady said:
Dont worry Luke, most people don't like Pred, but for the most part it does help until you taper to 20mg and under, only good for a short term to replace a longer term drug. Having a baseline bone density is important. As we get older or female changes we need lots of calcium and Vitamin D to help reduce bone loss. I know the side effects, moody and insommnia , and want to eat and everything tastes bland... but the important factor here is controlling the disease first. Give it a go.
The annoying thing though is that I'm not underweight. Until 2 months ago when my recent flare started and they gave me the retention enemas I was feeling great, a little tired now and then, but I was working my ass off in the gym to lose weight. I'm about 30lb overweight which is mainly down to when I was first diagnosed. I was painfully thin then and had to eat and eat, take special calorie drinks etc to keep a healthy weight but as the crohn's took a back seat I never noticed and just kept eating.

A month ago I had lost a stone and was started to get myself back in shape, still some way to go but getting better. Now I'm overweight and facing preds. That's my worry. I'll end up morbidly obese by the time the 10 weeks is up.

10 years on the mesalasine and 3-4 flares, now with what seems like a minor falre that won't go I'm facing this evil drug. For instance I feel fine today but last night I felt rough. This flare hasn't stop me leaving the house or kept me in bed. I just don't feel like I need something so harsh as pred but the options it seems aren't there.
03-19-2010, 09:18 AM   #27
Astra
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Hi Luke

Listen, in all seriousness, and i know we've all had a laugh about Pred and all our side effects, but this drug has saved my life, literally.
Remember, everyone is different, and you might not even have any of these effects, if you choose to go on it,
I'm on 20mg now, and all the effects are gone now.
And whilst on the high dose, I had a lot of fun actually! tons of energy and got loads done, cos before Pred, I was wallowing in self pity and a couch potato
besta luck
Joan xx
03-19-2010, 09:27 AM   #28
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shooty said:
The annoying thing though is that I'm not underweight. Until 2 months ago when my recent flare started and they gave me the retention enemas I was feeling great, a little tired now and then, but I was working my ass off in the gym to lose weight. I'm about 30lb overweight which is mainly down to when I was first diagnosed. I was painfully thin then and had to eat and eat, take special calorie drinks etc to keep a healthy weight but as the crohn's took a back seat I never noticed and just kept eating.

A month ago I had lost a stone and was started to get myself back in shape, still some way to go but getting better. Now I'm overweight and facing preds. That's my worry. I'll end up morbidly obese by the time the 10 weeks is up.

10 years on the mesalasine and 3-4 flares, now with what seems like a minor falre that won't go I'm facing this evil drug. For instance I feel fine today but last night I felt rough. This flare hasn't stop me leaving the house or kept me in bed. I just don't feel like I need something so harsh as pred but the options it seems aren't there.
Hey, dont worry, I just lost 26lbs but still have more to go! I am aware of being overweight, I am just conscience of it now. Been on Pred too many times to know you have to watch what you eat, and eat smaller meals thru the day. Hang in there!
03-19-2010, 10:04 AM   #29
shooty
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Of course you are both right. It actually finally seems like after 10 years for the first time I'm accepting that the Crohn's is serious, up until now I had managed really well. I guess that's been a godsend in many ways, I've gotten through the birth and early stages of my three kids and not been too ill to help my wife, or be an extra burden.

On the exercise front, I was wondering however if anybody had found issues with exercise whilst on pred. I enjoy boxing and have a bag in my garage, it's my stress release. My worry is that with the possible bone issues is that something I can carry on with, as hitting a heavy object might not fair well
03-19-2010, 03:22 PM   #30
Astra
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Hi Luke

go for it!
You will have boundless energy and If I'd have had a punchbag in my garage, I would've
I think long term Pred causes loss of bone density, not sure, but I don't think you'll break anything boxing
good luck with it, any questions, just shoot!
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