Re: I need some tough love right now. - Just Venting. Nothing to do with SCD.

March 23, 2010

I don't think you'll like getting drunk on Imuran but I haven't tried it.

This too shall pass. It will get better. Pred is a nightmare and a blessing--weirdly love/hate drug. Peanut butter is legal and pure cocoa butter...

Feel better and don't be so hard on yourself about everything. We've probably all lost a lot from IBD. It's a piece of r-ce,isn't it?

I'm on Prednisone... which i'm going to start weening off of because the side effects are not worth whatever it's helping with. I'm having alot of depression, mood swings, and mental breakdowns. Never had these side effects with Prednisone before, but maybe antibiotics change that too. I took Antibiotics for 3 days, and now i'm going to be in the worst flare ever for 3 months if this continues for 30 more days.

I've gone back to into/stage 1 foods, and I can't tell what's effecting me and what's not. I was eating only meat for 3 days at one point, but I can't keep doing that. I already lost 20 pounds in less than 2 months, which isn't healthy. MY body needs energy to heal, but I don't know what it wants to have that it won't react with. Right now I huess it's reacting with everything!

I've been really thinking of living for today and not for tomorrow..... like going off SCD and eating whatever, getting drunk, passing out, and doing it all again the next day. I'll go on the Imuran my doc wanted me on and things will be all better.... I won't have to cook everyday when I get home because I drive 2 hours to work and back so I don't have any time to do anything else. I wouldn't have lost the person I thought was my other half because of how stressfull this disease and this diet can be, and I would have been able to eat all the peanut butter easter eggs I wanted to last year, and do it again this year.

Then I remember i'm on Prednisone, and it's freaking me out in the head! Maybe it's the Asacol.... considering the side effects of it are exactly what it's supposed to be treating? Now does that make any sense?

-UC - 1+ yearsSCD - 8 months 100% strict and 4 months restricted diet.Asacol - 12 pills a day Prednisone 40mg entocort With vit E mixed inBack to intro/stage 1 for now.

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March 23, 2010

Then I remember i'm on Prednisone, and it's freaking me out in the head! I feel you! Prednisone messes with my head too, majorly. I got so depressed a couple weeks ago, I just wanted to die. That's a little better now, but it gets me so jittery! I had a piano competition last weekend, and also a piano recital, and I got so nervous that I totally blanked. That NEVER happens! I never get performance anxiety! The prednisone wacks me all out. You aren't alone =)Maybe it's the Asacol.... considering the side effects of it are exactly what it's supposed to be treating? Now does that make any sense?None whatsoever. Even less sense than fat dietitians, and low calorie orange juice. Don't go off the diet though! We would be sad =( Plus, even if you find the SCD is not the right thing for you, getting drunk and passing out every day is no way to live your life. You'd be hung over all the time, and that would stink. Just saying =) Remember: this too shall pass. I bet you will feel a bunch better tomorrow, or if not tomorrow, then next week. You'll get through it! Peace =)Alyssa 16 yo UC April 2008, dx Sept 2008SCD June 2009 (restarted)Azathioprine 50 mg 1x per dayPrednisone 35 mg 1x per day

March 23, 2010

,

I never took prednisone but enterocort made me crazy. I could not sleep and had

electrolyte imbalances. It made me feel horrible.

I know you want to chuck it all. I would think on pred. that you would at least

be able to eat most SCD foods. I don't know why you are having so many symptoms,

but I am sure not being on SCD would make them worse.

SCD may have been one reason, or an excuse,for your break up, but if she could

not stick with you on SCD, then this was not for the long run. Perhaps she could

not deal with this, but someone who can is out there for you.

I also wonder if the emotional problems are related to gut ecology.

I hope you feel better. Once you feel physically better, the emotions will get

better. Could you be vitamin d deficient? That is linked to depression.

PJ

>

> > Then I remember i'm on Prednisone, and it's freaking me out in the

> > head!

>

> I feel you! Prednisone messes with my head too, majorly. I got so

> depressed a couple weeks ago, I just wanted to die. That's a little

> better now, but it gets me so jittery! I had a piano competition last

> weekend, and also a piano recital, and I got so nervous that I totally

> blanked. That NEVER happens! I never get performance anxiety! The

> prednisone wacks me all out. You aren't alone =)

>

> >

> > Maybe it's the Asacol.... considering the side effects of it are

> > exactly what it's supposed to be treating? Now does that make any

> > sense?

>

> None whatsoever. Even less sense than fat dietitians, and low calorie

> orange juice. Don't go off the diet though! We would be sad =( Plus,

> even if you find the SCD is not the right thing for you, getting drunk

> and passing out every day is no way to live your life. You'd be hung

> over all the time, and that would stink. Just saying =) Remember: this

> too shall pass. I bet you will feel a bunch better tomorrow, or if not

> tomorrow, then next week. You'll get through it!

>

> Peace =)

> Alyssa 16 yo

> UC April 2008, dx Sept 2008

> SCD June 2009 (restarted)

> Azathioprine 50 mg 1x per day

> Prednisone 35 mg 1x per day

>

March 23, 2010

Maybe it's the Asacol.... considering the side effects of it are exactly what it's supposed to be treating? Now does that make any sense?It's may be prednisone. That stuff can make you crazy. But, , you've lost 20 pounds and you are in a flare. You arequite ill at the moment - and malnourished. Your body probablyfeels like it is on a starvation diet because it can't get sufficientnutrients in. Plus, below normal endorphins caused from an auto-immune disease. You don't need it to be the side effects of the drugsto feel depressed - the illness is quite capable of doing that to youall on its own. And the truth is, you have had things to be depressedabout, breaking up and being ill and diet not working as well as it usedto. It's not a rosy time for you - and the depression is heightening all of that. I used to have periods of depressions before I was diagnosed, during theyears I was in denial that I was sick. And then it took me years andyears after that to realize that that level of depression came from theillness and was not part of my behavioral-psychological makeup. Itcame from a chemical deficit or imbalance, which is a whole 'nother thing. They vanished after I began treatment. You may want to consult with your doctor about it, but I thinkrealizing that the source of it is chemical, not existential or metaphysical,may also help to some extent. Mara

March 23, 2010

i've started back on the freeda multivitamin. SCD legal. For vitamins, and I try to go outside for lunch so I get some sunlight.This flare is from antibiotics, Last time I took them I flared for 8 months straight. I didn't want to take them but the IV version is only available in emergency rooms and the butt shot wasn't available at the place I went to because it's too "old school" I guess. So, it was down to what end I wanted to sacrifice. I figured since my throat was closing up, I had better take care of that first because the other end won't matter much without a beginning.I'm trying to eat more yogurt, and Was researching how to make sourkraut so I can drink the juice from it, but it's confusing. Gonna try making it in a 2 quart canning jar and see what happens.I'll live -UC - 1+ yearsSCD - 8 months 100% strict and 4 months restricted diet.Asacol - 12 pills a day Prednisone 40mg entocort With vit E mixed inBack to intro/stage 1 for now.To: BTVC-SCD From: smdsmom2008@...Date: Wed, 24 Mar 2010 00:36:48 +0000Subject: Re: I need some tough love right now. - Just Venting. Nothing to do with SCD.

,

I never took prednisone but enterocort made me crazy. I could not sleep and had electrolyte imbalances. It made me feel horrible.

I know you want to chuck it all. I would think on pred. that you would at least be able to eat most SCD foods. I don't know why you are having so many symptoms, but I am sure not being on SCD would make them worse.

SCD may have been one reason, or an excuse,for your break up, but if she could not stick with you on SCD, then this was not for the long run. Perhaps she could not deal with this, but someone who can is out there for you.

I also wonder if the emotional problems are related to gut ecology.

I hope you feel better. Once you feel physically better, the emotions will get better. Could you be vitamin d deficient? That is linked to depression.

PJ

>

> > Then I remember i'm on Prednisone, and it's freaking me out in the

> > head!

>

> I feel you! Prednisone messes with my head too, majorly. I got so

> depressed a couple weeks ago, I just wanted to die. That's a little

> better now, but it gets me so jittery! I had a piano competition last

> weekend, and also a piano recital, and I got so nervous that I totally

> blanked. That NEVER happens! I never get performance anxiety! The

> prednisone wacks me all out. You aren't alone =)

>

> >

> > Maybe it's the Asacol.... considering the side effects of it are

> > exactly what it's supposed to be treating? Now does that make any

> > sense?

>

> None whatsoever. Even less sense than fat dietitians, and low calorie

> orange juice. Don't go off the diet though! We would be sad =( Plus,

> even if you find the SCD is not the right thing for you, getting drunk

> and passing out every day is no way to live your life. You'd be hung

> over all the time, and that would stink. Just saying =) Remember: this

> too shall pass. I bet you will feel a bunch better tomorrow, or if not

> tomorrow, then next week. You'll get through it!

>

> Peace =)

> Alyssa 16 yo

> UC April 2008, dx Sept 2008

> SCD June 2009 (restarted)

> Azathioprine 50 mg 1x per day

> Prednisone 35 mg 1x per day

>

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March 23, 2010

I have to second what Mara said. I thought I was just different, dysfunctional

and that it was my own fault I was making myself miserable for years. No one

believed me when I thought my health concerns were legitimate, and specialists

telling me it was all in my head didnt' help either. When I was going like 20-30

times/day this summer my parents still wouldnt' believe I was sick and not just

trying to get out of working hard, so I pushed myself to keep going to school so

I could get financial aid, since I was too loopy (actually anemic and

autointoxicated) to tutor. It was hard to even read an article for school but I

was in denial. I finally went in for feet too swollen to walk on (by that point

I could no longer drive a car), and was told I needed an immediate blood

transfusion and prednisone and asacol.

My parents came around and realized I wasn't just being lazy, but then my

boyfiend left me (I was(/am still sort of) really in love too), saying it was

just too much stress, and it wasn't really his thing, and now I have to quit

school for a while and move in with my parents because I keep going into flairs.

I am scared sh*tless sometimes (no pun intended) about what is going on inside

me, and even on a lower dose of prednisone, I still think about ending it all

some days. When I was coming down from the higher doses, I was an emotional

wreck and couldnt' concentrate on anything. I know it's just the prednisone, and

years of depression caused NOT by something inherently wrong with me, but by gut

imbalances, toxins and illness leading to wonky things with the immune and

endocrine systems. It is still hard, but taking school and work out of the

equation for me is what I have to do to get better.

When I have a good day, I feel like I get my brain back for a little while, but

then I have to let it go again the next day. I walk around in a daze, I barely

have the energy to cook my food, and I haven't seen most of my friends in a long

long time because most of them just don't get it that I can't go out drinking

with them late at night or just crash wherever without my meds and food in the

fridge.

Sorry, guess this turned into my rant. But , it does really really suck

to be this sick. It sounds like you're still trying to live a very stressful

lifestyle. When I had to give up work, I fought against it till fainting spells

made me stop. And I hated to give up school this quarter, and my apartment. But

I have to remember that I am really sick and I need to get better, and stress is

no good! On days when I have been flairing, I do not have the energy to do

anything but try to find something enjoyable, like sitting in the sun if I'm

that lucky, to do. Or watching a movie. Then when I have a burst of energy I

make food and try to clean up after myself. Then I collapse again. I know that

if I push myself more than that, it will hurt me. Do you have anyone who could

help you out while you get better? Would it be possible to take a leave of

absence from your job? I considered wellfare for a while too but I don't know

how to go about doing that, or how long it would take. I don't know what your

situation is, but I get the impression that you are really stressed out, and

have been for a while.

I guess all I meant to say in the end was, I think a lot of us have been there,

physically and psychologically, and I hope you find a way to get through it

okay.

Kat

27

UC since June 09

SCD since Feb 10

Prednisone 10mg, acyclovir, multivitamins

>

> >

> > Maybe it's the Asacol.... considering the side effects of it are exactly

what it's supposed to be treating? Now does that make any sense?

>

> It's may be prednisone.

>

> That stuff can make you crazy.

>

> But, , you've lost 20 pounds and you are in a flare. You are

> quite ill at the moment - and malnourished. Your body probably

> feels like it is on a starvation diet because it can't get sufficient

> nutrients in. Plus, below normal endorphins caused from an

> auto-immune disease. You don't need it to be the side effects of the drugs

> to feel depressed - the illness is quite capable of doing that to you

> all on its own. And the truth is, you have had things to be depressed

> about, breaking up and being ill and diet not working as well as it used

> to. It's not a rosy time for you - and the depression is heightening all of

that.

>

> I used to have periods of depressions before I was diagnosed, during the

> years I was in denial that I was sick. And then it took me years and

> years after that to realize that that level of depression came from the

> illness and was not part of my behavioral-psychological makeup. It

> came from a chemical deficit or imbalance, which is a whole 'nother

> thing. They vanished after I began treatment.

>

> You may want to consult with your doctor about it, but I think

> realizing that the source of it is chemical, not existential or metaphysical,

> may also help to some extent.

>

> Mara

>

March 23, 2010

I'm trying to eat more yogurt, and Was researching how to make sourkraut so I can drink the juice from it, but it's confusing. Gonna try making it in a 2 quart canning jar and see what happens.Let me know! Sauerkraut has been on my to do list forever!! Maybe spring break... Peace =)Alyssa 16 yo UC April 2008, dx Sept 2008SCD June 2009 (restarted)Azathioprine 50 mg 1x per dayPrednisone 35 mg 1x per day

March 23, 2010

,

I'm sorry you had to go on prednisone. It can definitely make you crazy. I

was on it, in varying doses, for 11 years so I learned how to tell whether my

mood was prednisone influenced or how I really felt. Unfortunately when I was

on high doses of the pred I didn't care what was causing it, I just wanted to

hit something, eat something, yell at someone, cry, scream or curl up in a ball

and be left alone for the rest of my life. Yep. It can make you crazy. Plus

there are all the horrible physical side effects that come with it! Insomnia,

sweating, headaches, moon face, insatiable hunger...

But it will pass. Your body slowly adjusts to it and when you and your doc

decide that your body is healed enough to start tapering you'll have more and

more good days and you'll look back and wonder if you really felt as bad as you

did. It is tough but sticking to SCD is going to be the best thing for you in

terms of getting off the prednisone....and I know you want to get off it. You

can have illegals now and not feel it but once you start to taper, you will

start to feel its effects.

You can do this. You can make sure that this drug doesn't control you. Just

take it one day at a time. I'm so sorry that you're having to go through all of

this and hope that you get off the prednisone and start feeling healthy really

really soon. When I was younger and on high pred doses I was complaining about

it to my Mum. I was lamenting the fact that I couldn't find any jokes about

prednisone online. Then it occurred to me that everyone on it was probably too

angry or depressed to come up with a set of jokes. That made me laugh. I

suppose dark humor comes with the pred too.

Stacey

>

> I'm on Prednisone... which i'm going to start weening off of because the side

effects are not worth whatever it's helping with. I'm having alot of depression,

mood swings, and mental breakdowns. Never had these side effects with Prednisone

before, but maybe antibiotics change that too. I took Antibiotics for 3 days,

and now i'm going to be in the worst flare ever for 3 months if this continues

for 30 more days.

>

> I've gone back to into/stage 1 foods, and I can't tell what's effecting me and

what's not. I was eating only meat for 3 days at one point, but I can't keep

doing that. I already lost 20 pounds in less than 2 months, which isn't healthy.

MY body needs energy to heal, but I don't know what it wants to have that it

won't react with. Right now I huess it's reacting with everything!

>

> I've been really thinking of living for today and not for tomorrow..... like

going off SCD and eating whatever, getting drunk, passing out, and doing it all

again the next day. I'll go on the Imuran my doc wanted me on and things will be

all better.... I won't have to cook everyday when I get home because I drive 2

hours to work and back so I don't have any time to do anything else. I wouldn't

have lost the person I thought was my other half because of how stressfull this

disease and this diet can be, and I would have been able to eat all the peanut

butter easter eggs I wanted to last year, and do it again this year.

>

> Then I remember i'm on Prednisone, and it's freaking me out in the head!

>

> Maybe it's the Asacol.... considering the side effects of it are exactly what

it's supposed to be treating? Now does that make any sense?

>

> -

> UC - 1+ years

> SCD - 8 months 100% strict and 4 months restricted diet.

> Asacol - 12 pills a day

> Prednisone 40mg

> entocort With vit E mixed in

> Back to intro/stage 1 for now.

>

> _________________________________________________________________

> The New Busy is not the old busy. Search, chat and e-mail from your inbox.

>

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-US:WM_HMP:032010_3

>

March 24, 2010

,If I could I would give you a hug right now! Sounds like life is biting hard at the moment. How fast are you tapering? I would stop the asacol as well. It isn't really for flare, just maintenance. Are you taking a probiotic? I think that is what you need the most at the moment, especially if you aren't taking yogurt. Just open the capsule and mix it with some room temperature liquid if you are having trouble digesting food at the moment. Go take an epsom salt bath and then take a nap if you are tired.AmeliaTo: btvc-scd Sent: Tue, March 23, 2010 11:48:21 PMSubject: I need some tough love right now. - Just Venting. Nothing to do with SCD.

I'm on Prednisone.. . which i'm going to start weening off of because the side effects are not worth whatever it's helping with. I'm having alot of depression, mood swings, and mental breakdowns. Never had these side effects with Prednisone before, but maybe antibiotics change that too. I took Antibiotics for 3 days, and now i'm going to be in the worst flare ever for 3 months if this continues for 30 more days. I've gone back to into/stage 1 foods, and I can't tell what's effecting me and what's not. I was eating only meat for 3 days at one point, but I can't keep doing that. I already lost 20 pounds in less than 2 months, which isn't healthy. MY body needs energy to heal, but I don't know what it wants to have that it won't react with. Right now I huess it's reacting with everything!I've been really thinking of living for today and not for tomorrow.... . like going off SCD and eating whatever, getting drunk, passing out, and doing

it all again the next day. I'll go on the Imuran my doc wanted me on and things will be all better.... I won't have to cook everyday when I get home because I drive 2 hours to work and back so I don't have any time to do anything else. I wouldn't have lost the person I thought was my other half because of how stressfull this disease and this diet can be, and I would have been able to eat all the peanut butter easter eggs I wanted to last year, and do it again this year.Then I remember i'm on Prednisone, and it's freaking me out in the head! Maybe it's the Asacol.... considering the side effects of it are exactly what it's supposed to be treating? Now does that make any sense?-UC - 1+ yearsSCD - 8 months 100% strict and 4 months restricted diet.Asacol - 12 pills a day Prednisone 40mg entocort With vit E mixed inBack to intro/stage 1 for now. The

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March 24, 2010

-

I am sure you'll get better. Remember, even this will pass.

Is the pred working? I wouldn't worry about the side-effects as much --

important thing is to bring the bleeding under control so that you can gain some

health and start fighting the disease back.

We all know it can be frustrating, but hang in tightly there.

Depending upon your insurance, I would see if you can change the medications and

get things under control.

I really hope that azathioprine kicks in for you.

If its any consolation, I'm single in a complicated, uncertain relationship,

with my family living thousands of miles away.

We are here for each other. You're welcome to call me and vent, if you'd like --

write to me off-line.

Keep us posted.

Hugs,

-Andy.

March 24, 2010

I know you are grieving your relationship. I wanted to add that the changes of

an illness and diet will affect any relationship. Although I've been married 25

years, it was an adjustment.

My parents have been married over 55 years and my dad has been seriously ill for

the last few. They are both struggling with the changes in their relationship.

My dad enjoyed taking care of my mom. They don't like it the other way around.

Every relationship has its challenges and they take work. Hopefully you will be

with someone who will be able to work through the ups and downs, as you will

have to do too.

, when you are feeling better, you will be so much stronger.

PJ

>

> -

>

> I am sure you'll get better. Remember, even this will pass.

>

> Is the pred working? I wouldn't worry about the side-effects as much --

important thing is to bring the bleeding under control so that you can gain some

health and start fighting the disease back.

>

> We all know it can be frustrating, but hang in tightly there.

>

> Depending upon your insurance, I would see if you can change the medications

and get things under control.

>

> I really hope that azathioprine kicks in for you.

>

> If its any consolation, I'm single in a complicated, uncertain relationship,

with my family living thousands of miles away.

>

> We are here for each other. You're welcome to call me and vent, if you'd like

-- write to me off-line.

>

> Keep us posted.

>

> Hugs,

> -Andy.

>

March 24, 2010

it was stew beef with a little swiss cheese on top that I had had in the refrigerator, but I left it out on a plate inside the microwave (never even microwaved it) for 10 hours during the day. I ended up throwing it away. Room temp in my apartment now is about 70 F-UC - 1+ yearsSCD - 8 months 100% strict and 4 months restricted diet.Asacol - 12 pills a day Prednisone 40mg entocort With vit E mixed inBack to intro/stage 1 for now.To: BTVC-SCD From: LouisianaSCDLagniappe@...Date: Wed, 24 Mar 2010 11:06:15 -0500Subject: RE: Re: I need some tough love right now. - Just Venting. Nothing to do with SCD.

,

Flares are no fun. It's especially tough when you have to make an

either/or choice like you did with the antibiotics.

I had the same kind of choice after my cancer surgery -- here I am with a

24" slice in my gut and all of the pain meds have illegals in them,

because I didn't think about asking for compounded pain meds before hand.

The 800 mg Motrin was especially entertaining. Motrin gives me the runs,

any way -- and it's formulated with LACTOSE! I can state, unequivocally,

that having an "explosion" and having to bolt for the necessary

with a 24" slice in your gut is NOT entertaining.

I think you are right to get plenty of good probiotics down there to help

repopulate your gut, but don't go overboard with them!

Was the stuff you left out for 10 hours frozen, or not? What about the

room temperature?

—

Marilyn

New

Orleans, Louisiana, USA

Undiagnosed IBS since 1976, SCD since 2001

Darn Good SCD Cook

No Human Children

Shadow & Sunny Longhair Dachshund

Babette the Foundling Beagle

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March 24, 2010

Hi ,

I already posted back to you on this, but I just wanted to add something about

the whole relationship break up thing. It's been a few months for me - my guy

left me on new years eve - and I was on Prednisone at 40mg the whole month of

December and part of January, so the breakup happened as I was going crazy

crying half the day, wanting to punch someone the other, and not sleeping at

night while starting a new quarter at school. It was nuts, and I felt like I was

really falling apart through a lot of it. It was before I was on SCD too so I

was giving into sugar and starch cravings from the prednisone, and probably

making things a lot worse. Epsom salt baths helped, but most of the time I

couldnt' stop thinking about the guy even if I really really tried, and I'd get

adrenaline rushes at the mere thought. I felt out of control.

But, as a sort of light at the end of the tunnel, now I am on 10mg, and things

are much MUCH better. I think at the lower doses our bodies are better able to

handle the side effects. Anyway, having learned to deal with this illness on my

own, and with some help from friends and family, I'm really at a place of

emotional intelligence in my life where I feel I am much more grown up than when

I was diagnosed back in June. I have come a long way in learning how to

prioritize my life, how to enjoy what I can, how to be grateful that I am even

alive, and how to take things in stride that others (including my ex) would go

nuts over and over-dramatize. I realize at this point that his companionship

would really not be what I need anymore in my life. I am ready to meet someone

who is able to meet me at my new maturity level, and not have

fight-or-flight-syndrome when it comes to a relationship, especially one with

someone with a chronic illness. Freaking out over someone being sick and running

away from it may be a legitimate defense mechanism, but I don't need that kind

of behavior in my life. I feel MUCH happier having come to terms with being

alone, but looking forward to a new me that has more of my feet on the ground

than I have in all my " adult " life. It is a good thing that I am not worrying

about someone else too, someone whose delicate ego I would have to placate while

trying to heal myself physically, emotionally and spiritually.

So! There is the relationship rant. I know how hard it is to think logically

(and remember what was just thought logically 2 seconds ago!) while on P. I

really do feel like now I can look back at that time and be grateful that during

it I found the diet, and learned how to put myself first in my life, albeit the

hard way.

Hugs from cyberspace!

Kat

27

UC since June 09

SCD since Feb 10

Prednisone 10mg, acyclovir, multivitamin, probiotics