Re: Continued blood loss with UC on diet - how long is normal?

February 19, 2010

> Kat,

> I can answer some prednisone questions . When you're on, and coming off of

prednisone, there's a huge slew of symptoms that you can potentially experience.

How intense the side effects often depends on how much you were taking at any

one time. I found that if I weened more slowly off of the drug, the side

effects weren't as bad....but then again, I was on it for 11 years so I got

pretty used to the symptoms. At the higher doses I experienced pretty much

everything you listed:

>

> joint pain and head aches - because your body is retaining water in the joints

and cheeks. It also lowers your bone density so be sure to have that checked

and that you're getting enough calcium.

> anger/violent thoughts - I nearly stabbed someone with a pencil, I kid you

not.

> depression - I was never going to kill myself but there were some thoughts in

that general area.

> fatigue - though I think it was more related to how sick I'd been. I did have

trouble getting upstairs (which was inconvenient as my room was upstairs) but I

think that was less fatigue and more related to the steroid's effect on my

joints.

> Insomnia - like you wouldn't believe!

nightly benadryls - otherwise impossible to sleep.

> Feverish/night sweats - seriously...it sucks to wake up drenched in sweat,

doesn't it?

I had that, too.

> Weight gain/Moon Face/Buffalo Hump - from the water retention...who comes UP

with these horrible names?

yep to weight gain - and that was only in 3 weeks. And beginning of puffy,

scary face.

> Constantly hungry - because clearly my body wants to gain MORE weight /sarcasm

Also, my muscles all over were more pliant - which meant that my stomach was

too, which

meant, not only constant hunger, but I could eat way more, too, because normal

limits

of feeling full did not apply - lovely!

> Inability to concentrate - it made high school extraordinarily difficult. I

even had the added issue of falling asleep when trying to do homework.

yep - and sometimes I felt like I was sitting in the middle of a whirlwind -

trying to be the still center.

But it is all this swirling energy that is not really useful for anything

(except eating, heh!) because

it is so hard to direct or channel.

> Diluted sense of taste - everything was so bland until I started weening off

it.

yeah - everything tasted wrong until I started on the lower dose. That was

another

reason you wanted to eat, to see if anything could taste right.

Also, balance was all wrong, which made doing things like inversions in yoga

rather

an adventure. Although doing yoga was probably the thing that kept me sanest.

Very poor impulse control.

Mara

February 19, 2010

WOW. I finally feel kind of normal reading the responses to this email. I've

been on prednisone for all 17 years of my disease and am hoping to get off of it

with SCD!

Kat- 2 things really struck a chord with me-

1. That your body does well with meat. Me too! I was never a big meat eater

before the diet. I still don't really love beef, but I eat a lot of buffalo. I

have fantastic days when I eat meatloaf or burgers. Crazy.

2. Your recurrence of plantar faciitis... I always get strange side effects from

the disease and medications. I've had everything from arthritis to cataracts.

But about 2 months ago I got diagnosed with plantar faciitis... only after a

week of crawling on my hands and knees at night from the pain and one emergency

room trip later... FYI- I've been stretching a lot and am convinced the night

brace I used helped it go away.

As for " normal " predisone side effects, DITTO ON EVERYTHING EVERYONE SAID!!!

Fatigue, depression, insomnia, night sweats, " moon face " , " buffalo hump " , hunger,

weight gain... it's like going through puberty for eternity. Because going to

the bathroom 15 times a day isn't embarrassing enough, why not have a big fat

face to go with it?!?!?!

Cheers to having people to share this with. GO SCD!!!

-Joanna

SCD 9/2009, Crohn's 1992

February 22, 2010

On the planter faciitis, my thoughts are that I actually had some colitis-like

stuff going on when I was 12 that never completely went away. I had excruciating

pain going to the bathroom and chronic constipation since then, plus

halucinations. I got planter faciitis then, but i also had hips that were

misaligned - no one else noticed this but I did! And one side of my face that

was always measured to be lower than the other. Weird unrelated things right?

Except that after extensive body work and 1.5 years of yoga after 2 car

accidents, the faciitis, hip pain, back pain, neck pain, headaches, hair loss,

knee pain, etc. was all going away. With the ulcerative colitis, it all came

back - bam. All at once. I always feel like I am being " mushed " out of shape by

the internal swelling, and that my facial tissue gets taught, and restricts

blood flow to extremities, as well as making joints hurt because they are no

longer in positions to support the organism, being mushed out of place and all.

That's my theory! It would make sense that your night brace would have helped.

Yoga is the best thing for me, and exercise and getting enough sleep so that the

central nervous system has a chance to be repaired.

I really admire you! I was crawling for a while too and finally hospitalized

after arguments from me that it wasn't necessary - I'm not sure if it was the

anemia or inability to ask for help that was a stronger influence on that.

I am curious - you said you have been on prednisone for 17 years now! I am

bleeding more as I go off of it, while on the diet. I am afraid I may have to go

back on it again...and I am afraid of course of things not working. And I am

afraid of the effects of prednisone making my concentration too bad to finish my

schoolwork, losing my financial aid and having to quit school a second time due

to illness. My boyfriend left me because I was sick and didn't have an athletic

body anymore, and I am afraid of being sick for a long time and having to miss

out on life because of it.

How have you coped with your illness? Sometimes I get so upset at each

disappointment - each time I thought I was getting better and I wasn't. It is so

hard sometimes to keep trying to push my body to the maximum it can handle so

that I can continue doing what I have to do have money to buy food and pay rent,

and I let go of having a social life after just barely feeling able to have one

after many years of other illnesses.

Any advice would help. Maybe this is another thread. I feel silly for asking

this stuff but it just feels hard.

Kat

>

> WOW. I finally feel kind of normal reading the responses to this email. I've

been on prednisone for all 17 years of my disease and am hoping to get off of it

with SCD!

>

> Kat- 2 things really struck a chord with me-

> 1. That your body does well with meat. Me too! I was never a big meat eater

before the diet. I still don't really love beef, but I eat a lot of buffalo. I

have fantastic days when I eat meatloaf or burgers. Crazy.

> 2. Your recurrence of plantar faciitis... I always get strange side effects

from the disease and medications. I've had everything from arthritis to

cataracts. But about 2 months ago I got diagnosed with plantar faciitis... only

after a week of crawling on my hands and knees at night from the pain and one

emergency room trip later... FYI- I've been stretching a lot and am convinced

the night brace I used helped it go away.

>

> As for " normal " predisone side effects, DITTO ON EVERYTHING EVERYONE SAID!!!

Fatigue, depression, insomnia, night sweats, " moon face " , " buffalo hump " , hunger,

weight gain... it's like going through puberty for eternity. Because going to

the bathroom 15 times a day isn't embarrassing enough, why not have a big fat

face to go with it?!?!?!

>

> Cheers to having people to share this with. GO SCD!!!

> -Joanna

> SCD 9/2009, Crohn's 1992

>

February 22, 2010

Hi Kat

Sorry to say but that is just plain wrong naturopath said about prednisone. Prednisone does not affect thyroid. If you have suspected you havea thyroid problem should get tested. It is a sad thing but Endo's do have a clue when it comes to thyroid disease. Your symptoms below sound a lot like thyroid and adrenal. The longer we leave our thyroid without treatment the worse it gets.http://www.stopthethyroidmadness.com/long-and-pathetic/

http://www.stopthethyroidmadness.com/thyroid-depression-mental-health/

http://www.stopthethyroidmadness.com/tsh-why-its-useless/

http://www.stopthethyroidmadness.com/ferritin/

http://www.stopthethyroidmadness.com/t4-only-meds-dont-work/

Do you have any thyroid labs. You can post them to me offline if you want to.

Sky

To: BTVC-SCD Sent: Sun, 21 February, 2010 7:06:09 AMSubject: Re: Continued blood loss with UC on diet - how long is normal?

I have had autoimmune disorders since I was born, but I lost my hair for four years until last year - was constantly fatigued, depressed, anxious, weird heart things, constantly had/continue to have layer of fat everywhere despite lots of exercise. I will see what the results show from the blood test soon. Thanks for your thoughts.I'll also check out the link and ask my naturopath about it.Kat> > ____________ _________ _________ __> Switch to: Text-Only, Daily Digest â€¢ Unsubscribe â€¢ Terms of Use

..

February 22, 2010

HI Kat,

I totally agree that you likely have thyroid and andrenal problems.

Sounds a lot like thyroid and after years of illness one should always

suspect adrenal exhaustion. And... as has been said before here....

take the meds you need until you are stronger and can wean off them. In

the long run it will work better and you will be less

miserable.

Hi Kat

Sorry to say but that isÂ just plain wrong naturopath said about

prednisone. Prednisone does not affect thyroid. If you have suspected you

haveaÂ thyroid problemÂ should get tested. It is a sad thing butÂ Endo's

do have a clue when it comes to thyroid disease.Â Â Your symptoms below

sound a lot like thyroid and adrenal.Â The longer we leave our thyroid

without treatment the worse it gets.

February 22, 2010

Hi ,

Yeah, I actually had it wrong about the adrenals vr. thyroid. The naturopath

said adrenals the next time we talked. We just talked about everything at once

so I got them confused!

It makes sense. I have been sick a long time. I don't know if the two functions

would affect UC but it seems like they would.

Thanks for the help!

Kat

>

> HI Kat,

> I totally agree that you likely have thyroid and

> andrenal problems. Sounds a lot like thyroid and

> after years of illness one should always suspect

> adrenal exhaustion. And... as has been said

> before here.... take the meds you need until you

> are stronger and can wean off them. In the long

> run it will work better and you will be less miserable.

>

> Hi Kat

>

> Sorry to say but that isÂ just plain wrong

> naturopath said about prednisone. Prednisone does

> not affect thyroid. If you have suspected you

> haveaÂ thyroid problemÂ should get tested. It is

> a sad thing butÂ Endo's do have a clue when it

> comes to thyroid disease.Â Â Your symptoms below

> sound a lot like thyroid and adrenal.Â The longer

> we leave our thyroid without treatment the worse it gets.

>

February 22, 2010

Wow. Thanks for all the info n.

My naturopath did try to get my T3 and T4 tested along with TSH, but two of them

(I think t3 and t4) by family doctor and gastroenterologist would not approve,

because they said it was unnecessary, that TSH was the only indicator needed to

see how my thyroid was doing. My naturopath isn't in network with Group Health,

so I would ahve to pay out of pocket for her lab work unless I can explain to my

doctors at GH well enough why it is warranted and they approve it. This may

help! Thank you thank you!

Kat

>

> > Hi Kat

> >

> > Sorry to say but that is just plain wrong naturopath said about

> > prednisone. Prednisone does not affect thyroid.

>

> Yes, it does/can. Even my GP told me that. All steroids can affect the

> thyroid. Prolonged use shuts down your adrenal glands, which in turn

> effects your thyroid.

>

> Please read this:

>

> > When there isn't enough thyroid hormone, the body reacts in many

> > different ways. Higher TSH levels and hair loss are some of the signs of

> > a low thyroid hormone. TSH is the signal for the thyroid >to release the

> > thyroid hormone. In hypothyroidism there is only a small amount thyroid

> > hormone to release. The body wants more thyroid hormone, so it releases

> > lots of TSH in an effort to get >enough thyroid hormone.

> > Prednisone or other corticosteroids can sometimes cause hypothyroidism

> > or make it worse. There are a couple different ways that prednisone does

> > this. First, normal doses of prednisone can stop >TSH secretion, leading

> > to less thyroid hormone in the body. Second, the thyroid hormone comes

> > in two forms. The less active form is released from the thyroid. It is

> > then converted in the body to >the more active form. High doses of

> > prednisone can slow the conversion of the hormone to the more active

> > form. Both of these could result in hair loss or other symptoms that

> > look like >hypothyroidism.

>

> > The hypothyroidism or hyperthyroidism can also affect prednisone. People

> > with hyperthyroidism may need to increase the dose of prednisone, while

> > people with hypothyroidism may not need as >big of a dose.

> > There are several medications that are normally used to treat people

> > with hypothyroidism. Any questions about supplementing the thyroid

> > hormone should be addressed with a doctor or >pharmacist.

> > Endocrinologists specialize in problems with the thyroid, but many

> > primary care physicians can help with this problem as well.

> > Submitted by Kathleen , PharmD Candidate

> > The Ohio State University College of Pharmacy

>

> And this from a study with dogs:

>

> > The short-term effects of prednisone and phenobarbital on serum total

> > thyroxine (tT4), free thyroxine (fT4), and thyroid stimulating hormone

> > (TSH) were evaluated in euthyroid dogs. Twenty-six >beagles were

> > randomly divided into 3 groups receiving, respectively, a placebo,

> > prednisone (1.2 to 2 mg/kg body weight, per os, every 12 hours for 3

> > weeks), or phenobarbital (1.8 to 3 mg/kg body >weight for 1 week, then

> > 2.7 to 4.5 mg/kg body weight, per os, every 12 hours for 2 weeks). Blood

> > samples taken over a 6-week period were assayed for serum tT4, fT4, and

> > TSH. Phenobarbital >therapy in our study did not affect serum tT4, fT4,

> > or TSH concentrations. Prednisone therapy, however, significantly

> > decreased serum tT4 and fT4, but did not affect serum TSH concentrations.

>

> n

>

> --

> Now available. A fine gift for cat lovers:

> Confessions of a Cataholic: My Life With the 10 Cats Who Caused My

> Addiction

> by n Van Til

> www.wordpowerpublishing.com ; signed copies; free shipping in U.S.,

> reduced shipping elsewhere

>

February 22, 2010

Yeah, so I guess prednisone does affect both adrenals and thyroid, I think

through the connection between the two, like you said. There is another post in

this thread about it from n.

I am taking rhodiola to even out my cortisol production, but I just started it a

few days ago. It does give me energy during the day! I think I might be taking

it too late in the day for it to do everything it can though - I have been

fatigued it is hard to get out of bed before 11 - I had to quit work due to the

UC and anemia and take afternoon classes at school so this is okay, but I'm sure

taking it earlier would help as well, since cortisol production is highest

during the morning hours when we would naturally wake up if we were on a good

sleeping schedule.

Kat

>

> > Sorry to say but that isÂ just plain wrong naturopath said about prednisone.

Prednisone does not affect thyroid.

>

> I can't find the original post from what the naturopath said... but maybe s/he

was thinking of the adrenal/thyroid connection? Prednisone does affect the

adrenal glands... when you taper down to 5mg of prednisone, you have to be sure

that your adrenal glands are producing natural cortisol because the prednisone

is no longer are providing enough corticosteroid to keep your body functioning

properly. Just a thought.

> -Joanna

> SCD 9/2009, Crohn's 1992

>

February 22, 2010

Thanks Amelia! I'm ordering my yogurt kit today...I'll look into s. boulardii

too.

Kat

> >

> > Kat,

> >

> > My husband's bleeding went on for a very long time. I think it was well

over a year to a year and a half with only brief periods of no bleeding mixed

in. For some, it is one of the last things to go. Sounds like you are already

making good progress. I would try introducing the yogurt soon. With all the

anitbiotics and the prednisone for such long periods I think it is possible you

have a yeast/Candida problem. It also sounds like you are having quite a bit of

die-off. Take epsom salt baths (2 cups in a bath of warm water up to your

navel) and soak for about 15 minutes. It will help with the detox.

http://www.epsomsal tcouncil. org/health_ benefits. htm

> >

> > Hang in there,

> >

> > Amelia

> > Husband UC 9 years, SCD 20 months

> > LDN 3 mg

> >

> > ____________ _________ _________ __

> > From: evenstrangerquark <evenstrangerquark@ ...>

> > To: BTVC-SCD@yahoogroup s.com

> > Sent: Fri, February 19, 2010 3:59:45 AM

> > Subject: Continued blood loss with UC on diet - how long is

normal?

> >

> > Hello,

> >

> > This is my first post here, so sorry if this is too much detail, but I feel

a little lost about what is happening and I dont' know how much information is

helpful for anwering my questions. Thank to everyone who reads this!!

> >

> > Here is a brief paragraph about my history. I had painful

bloating/distention from 6 rounds of antibiotics in 8 months, then started

bleeding after the last round in June 09, at which time I was diagnosed with UC.

I tried various dietary changes and avoided medicine until December 09 when I

had a blood transfusion and started prednazone and mesalamine. The prednazone

didnt' seem to help that much and has caused lots of painful side effects, but

mesalamine stopped the bleeding (at that point it was 8-12/day most with blood)

and I was very anemic. Turns out I am allergic to mesalamine, so I went off of

that in mid-January right after starting to eat only SCD legal foods. I was on

allegra for the drug rash, but when I stopped that the bleeding returned in much

smaller quantities. I continued to only go 3ish times/day, less urgency, minimal

pain by comparison, and less bloating/gas.

> >

> > (I had also been experiencing schizophrenic symptoms that increased

gradually since the first round of antibiotics, which I had to mentally turn

off, and which have subsided since the transfusion and introduction of the

diet.)

> >

> > I just restarted with the actual beginner's diet last week and did that for

5 days (turns out the DCCC I bought for it was not legal and contained sugar). I

ate a bunch of bananas for a day, because I was getting really fatigued and

headachy from almost no carbs for so long. Then I ate only legal cheese/chicken

soup for most of the day to restart the diet and then added in squash and

spinach, which seemed to settle with me okay.

> >

> > I realized bananas are not so good for me in large quantities - they cause

burning. And cheese might not be good at all (gassy, bloating), so I stopped

both, and seem to be doing better today. Mostly formed stools! But still

bleeding since mid-January.

> >

> > I was wondering how long it takes people to get better from the bleeding? My

gastroenterologist had not heard of the diet - but said I could give her info

about it! - and wanted me start another drug, which would take a long time to

work and has many side effects. I would like to avoid medications if possible. I

am just now finishing my taper with prednazone, and it is literally hell coming

off of it.

> >

> > I guess another question I have for people is, what do you experience when

starting the diet and/or coming down from prednisone? I have had aches, joint

pain, headaches, anger, fits of crying that last up to half-an-hour, inability

to concentrate, fatigue (hard to walk up stairs), difficulty sleeping, violent

thoughts, feeling feverish, and my planterfaciitis has come back after a couple

years without it (thanks to yoga!). If all this is normal, then that's great. I

just feel at a loss about what is happening to me. (I read that detoxing by

starving out bacteria can cause some of this....but it feels very extreme!)

> >

> > I guess one more question is, in your experience, is eating a lot of red

meat (particularly beef) okay for a while in the beginning? That seems to settle

best with me, and the fat in it satisfies really really bad fat cravings I've

been having. Tried peanut butter once but I think that is too harsh.

> >

> > Thanks to anyone who has any input on one (or all!) of my questions. I have

a great naturopathic doctor, but I feel feedback from people going through this

would be really helpful.

> >

> > Kat

> >

> > 27 years old

> >

> > Diagnosed UC June '09

> >

> > Meds: end of taper with prednazone

> >

> > SCD foods only: Jan '10

> > Restart at beginning of diet Feb. '10

> >

>

February 22, 2010

Wow. I read that on pecanbread too but it seemed more of a poetic way to look at

cravings and not give into them. I am learning so much about bacteriology

through this. I just read a scientific american article about all the mechanisms

employed to " latch on " to cells and change their morphology to better suit the

bacteria's needs - it made me think - well of course our body's send a huge

immune response to that! If those things got out of control they would start

colonizing further and further into the tissue - makes me think Crohn's disease

is just a later stage of UC, or maybe caused by a bug that is more colonizing or

uses one method as opposed to another.

I am amazed but not surprised that there are more brain/body connections to the

gut than anywhere else. The digestive part of us goes back through evolution

farther than any other part maybe, since it is basically a bacterial ecology -

maybe ATP production goes back that far too, I don't know. But bacteria were

pre-oxygen rich environment I think, so it would make sense.

Thanks! The more I learn the better doctor I am to myself.

Kat

>

> > Hi ,

> >

> > Thanks. Yeah, I'm taking rhodiola to help my body adapt to making more

cortisol, and I have energy again during the day and I am experiencing less of

the weird die-off/prednisone withdrawal symptoms. Glad to know the cravings will

go down too! Lately I keep thinking about sugary things, which I know are

forbidden.

>

> That's just the bacteria/yeast pinging your brain to feed them by reminding

> you of sugar. That's their survival mechanism. They're manipulative little

> buggers.

>

> The gut and brain are attached by more neural pathways than

> any other parts of the body - and IME, our little friends have learned to take

> advantage of that.

>

> Mara

>

February 25, 2010

Hi ,

Thanks for your post. It is good to know I am not the only one moving very

slowly in recovery. I have been sick for many years leading up to this, so I

realize it will probably take a while to get better. I was vehemently against

taking prednisone or any meds for a long time when, looking back, I would have

helped myself out a lot to have done more research and tried something to make

the bleeding stop or slow down. It is so hard to think straight when the anemia

gets really bad. After 2-3 months of it, it was very difficult to read anything,

let along solve problems or make decisions! Things just got worse after that - I

was still going like 10 times a day, it hurt to drink water, so I was very

dehydrated, and the swelling in my body got worse too. I went into the doctor in

November (5 months after diagnosis) because my ankles and feet had become so

swollen and painful that I could not longer walk on them - I had been getting

rides to school and trying to keep going until then! - and they did blood work

to make sure it wasn't gout. Turns out I had half the blood (or less if I wasn't

so dehydrated) that I was supposed to, and was told I could die very easily from

the fainting spells I was having. I agreed to a blood transfusion, which was

very scary, but turned out just fine, and to prednisone to help stop the

bleeding. I am still not sure if that helped or the mesalamine (to which I was

allergic) helped more, but in any case, because I was not on the diet, I needed

something to stop the bleeding.

Right now I am back on 5mg daily (a low dose) of prednisone, and allegra.

Believe it or not I really think the antihistamine has a drastic effect. As much

as I am all for this diet, funcitoning without enough blood is not helpful to a

body that needs all its resources to heal itself. I guess when I read your post

I thought I would share the decision-making I had to go through when things got

really bad. At first I was only going 3-5 times a day too, but it got worse

without meds for me, thanks also to a naturopath that had me taking lots of aloe

vera juice daily, and told me to stop eating yogurt and meat and switch to soy

products.

At any rate, thanks for letting me know I'm not alone, and I wanted to let you

know that for me, at least, it was okay to go on meds for a while (even though

the side effects are terrible!)

If you chose to not do meds, I hope you get to feel better soon. I'm eating just

squash, zucchini and limited bananas and carrots now too. Not a lot of variety!

I miss my leafy greens!

My naturopath also wants to keep testing my thyroid and adrenals, as well as

metabolic panel - these are often affected by both meds and by exhaustion from

illness. I have this feeling like if my metabolism isn't working like it should,

my body will not fight the good fight in the tissue exposed to the bugs. Not

sure if your doctor is running bloodwork - just a thought.