Re: Help please, encouragement needed

August 23, 2010

Hey, Amber, I'm sorry to hear it's not going well for you right now. I've only been on the diet for 10 days so I can't speak from experience where long-term results go, but I know that my body feels the best when I have as little pharmaceutical intervention as possible. If it's possible to slow everything way down and take it one day at a time and try to get off from every med you can possibly get off from, this may help. I take Lomotil for D and a couple times a week a Xanax for anxiety and to help me sleep. When I was on prednisone for seven years when I was younger, it took me an entire year to get off from that drug, so slooooow and easy might help. I'm following the steps on this diet and am still experiencing D and feel a little weak, but I'm experiencing almost no brain fog. I also buy as much organic food as possible. Is stress from anything else acerbating your symptoms? I hate to be preachy, but praying and asking God for help really helped me also. Hope things get better soon. Traci

Hi all,

I've been reading the posts but have been keeping quiet. What I thought initially was "the" three month flare has turned into a three month plus flare that is getting worse. I am trying to be positive, but it's getting very hard, and I just need to vent and get some words of encouragement if anyone has any.

Background info- I was on Remicade for Crohn's but it stopped working, so I have switched to Humira. I've been strict on the diet since March and I was somewhat flaring a little before the three month mark, but it was not too bad, just occasional low grade fevers and issues with D. Well, since I hadn't had my period in almost a year, my gynecologist wanted me to try a month of birth control, which I was hesitant about but finally decided to. About a week into the pills I started to get worse, more fevers, worse D and more bathroom trips. Then last week when I started the Humira, I got even worse, higher fevers now (101.4), lots of D, lots of nocturnal BMs. I finally caved and asked to be put back on Prednisone- yes, that bad, but I want to stay out of the hospital, otherwise I don't think I could stick to the diet.

So now, here I am on 3 meds- Humira, Methotrexate & Prednisone, PLUS the diet and I still am not feeling like I'm getting anywhere. I can't sleep because of the Prednisone, which is making me absolutely exhausted and amplifying every emotion that I have, and now I'm really worried I'm one of the people that the diet isn't going to work for. I know it's not a linear process, and I guess that one slight improvement would be that my fevers aren't as high as they usually are (they get up to 103), but I think if I didn't get back on the Prednisone, soon they would get back up there. My trips to the bathroom are the most they've ever been, and I feel like I go mostly at night, which just exacerbates my not sleeping and exhaustion.

I will be honest when I say that I did not follow the stages, I just ate what was legal. I seemed to tolerate most things, but then my flares get worse and then honestly I feel like no matter what I eat my symptoms are bad. Will I still heal if I don't follow the stages?

Also, I get confused, because I don't know if I need to go low carb or not. I thought the premise of the diet is the type of carb and not necessarily low carb. I can do low carb for a while, but I find it hard to go extremely low carb for long periods of time, and I'm worried about it messing up my thyroid (which I've read that long periods of low carb without carb refeeds can).

So I guess I just want some reassurance that you think the diet still may work for me, despite my being on it for this long plus meds and getting worse. Do you think I'm a hopeless case? I'm so saddened right now, I feel like I do all that I can within my power to help my disease- follow the diet, take my meds, rest, exercise etc., and yet I just get worse. I don't really know what else I can do, and I originally got on the diet in the hopes of getting off my meds. Now my standards are so low that I just stick with the diet to hopefully stave off a hospital stay.

Sorry I'm such a bummer, but I don't know what to do. Do you think it was possibly the birth control that made things worse, and if so, how do I make it better? Or do you think I'm just one of the cases that the diet doesn't work for?

Thanks for listening,

Amber

August 23, 2010

> Hi all,

>

> I've been reading the posts but have been keeping quiet. What I thought

initially was " the " three month flare has turned into a three month plus flare

that is getting worse. I am trying to be positive, but it's getting very hard,

and I just need to vent and get some words of encouragement if anyone has any.

>

> Background info- I was on Remicade for Crohn's but it stopped working, so I

have switched to Humira. I've been strict on the diet since March and I was

somewhat flaring a little before the three month mark, but it was not too bad,

just occasional low grade fevers and issues with D. Well, since I hadn't had my

period in almost a year, my gynecologist wanted me to try a month of birth

control, which I was hesitant about but finally decided to. About a week into

the pills I started to get worse, more fevers, worse D and more bathroom trips.

Then last week when I started the Humira, I got even worse, higher fevers now

(101.4), lots of D, lots of nocturnal BMs. I finally caved and asked to be put

back on Prednisone- yes, that bad, but I want to stay out of the hospital,

otherwise I don't think I could stick to the diet.

>

> So now, here I am on 3 meds- Humira, Methotrexate & Prednisone, PLUS the diet

and I still am not feeling like I'm getting anywhere. I can't sleep because

of the Prednisone, which is making me absolutely exhausted and amplifying every

emotion that I have, and now I'm really worried I'm one of the people that the

diet isn't going to work for. I know it's not a linear process, and I guess that

one slight improvement would be that my fevers aren't as high as they usually

are (they get up to 103), but I think if I didn't get back on the Prednisone,

soon they would get back up there. My trips to the bathroom are the most they've

ever been, and I feel like I go mostly at night, which just exacerbates my not

sleeping and exhaustion.

>

> I will be honest when I say that I did not follow the stages, I just ate what

was legal. I seemed to tolerate most things, but then my flares get worse and

then honestly I feel like no matter what I eat my symptoms are bad. Will I still

heal if I don't follow the stages?

You don't have to follow the stages as long as you eat what you tolerate - but

you should redo intro for

a few days, make lots of broths. And then eat only your really easy foods for a

bit after that.

> Also, I get confused, because I don't know if I need to go low carb or not. I

thought the premise of the diet is the type of carb and not necessarily low

carb. I can do low carb for a while, but I find it hard to go extremely low carb

for long periods of time, and I'm worried about it messing up my thyroid (which

I've read that long periods of low carb without carb refeeds can).

If your issue is overgrowth of yeast - which can occur during the late second

month after all the easy to

kill bacteria have died off (happened to me - although I did not realize it at

the time) - then you may

have to go low carb or low fructose for a while.

Also, start cooking broths and eat those.

>

> So I guess I just want some reassurance that you think the diet still may work

for me, despite my being on it for this long plus meds and getting worse. Do you

think I'm a hopeless case? I'm so saddened right now, I feel like I do all that

I can within my power to help my disease- follow the diet, take my meds, rest,

exercise etc., and yet I just get worse. I don't really know what else I can do,

and I originally got on the diet in the hopes of getting off my meds. Now my

standards are so low that I just stick with the diet to hopefully stave off a

hospital stay.

>

> Sorry I'm such a bummer, but I don't know what to do. Do you think it was

possibly the birth control that made things worse,

yes. absolutely. I believe Marilyn's whole IBS complaint stemmed from taking

birth control at one point.

> and if so, how do I make it better?

Stop taking birth control - also, do you know what the fillers in them are?

Maybe the

filler is making you particularly ill or feeding the yeast or bacteria or

whatever is screwing

with your intestines at the moment. Or the fact that it is messing with your

hormones

and your system.

Also, if Humira is making you worse, why are you still taking it? I took

remicade at one point

for way too long, but it had no effect, it didn't make me worse. If it makes

you worse, just get

off.

> Or do you think I'm just one of the cases that the diet doesn't work for?

No, it worked initially. I think you had an overgrowth of yeast or a hard to

kill bacteria in the

second month, causing your ongoing 3 month flare. It can be hard to get rid of

it.

My 3 month flare lasted 4.5 months - although it wasn't as bad as yours. I

finally got

rid of it by going low fructose, which impeded the yeast (well, in retrospect, I

believe it was

yeast - am not sure now.) But it was still discouraging as I felt it had got

rid of all the progress

I had made prior to that. And even when I got *better*, it took me forever, and

really not until

I started LDN, to get back to how good I felt in the late first-up to 2.5 month,

before my

3 month flare began.

I suggest you look at the anti-yeast files on the list website and see if you

think these

things pertain to you. Take the spit test (google the term or look it up on

pecanbread.com).

Also, prednisone tends to increase yeast as it raises the blood

sugar and the yeast love that. To sleep at night, take epsom baths and

benadryl

before bed.

Also (2), you're depressed because part of your illness creates depression and

exhaustion, those are symptoms - can be symptoms as well from the mind

and body control that the yeast/bacteria/mold overgrowth exercise on us

-- so it is no wonder you feel low and discouraged.

Feel better,

Mara

August 23, 2010

Hi Traci,

I know, I'm not too thrilled about being a walking pharmacy right now. I would

much rather not be on meds, but I'm fearful that if this is how I am on the

meds, I don't know want to know what it would be like off. I am on a pretty

quick taper for the prednisone so I will be off that, but I just started the

Humira and supposedly it can take up to 3 months to see if it works.

I try to buy mostly organic as well. Honestly, I don't think stress is a factor.

I actually get stressed from the symptoms and it doesn't seem so much the other

way around. But you're right about praying. I do, but I haven't been as good

about it lately, so maybe that's the missing piece. Thanks for your tips and

advice.

Amber

>

> Hey, Amber, I'm sorry to hear it's not going well for you right now. I've only

been on the diet for 10 days so I can't speak from experience where long-term

results go, but I know that my body feels the best when I have as little

pharmaceutical intervention as possible. If it's possible to slow everything way

down and take it one day at a time and try to get off from every med you can

possibly get off from, this may help. I take Lomotil for D and a couple times a

week a Xanax for anxiety and to help me sleep. When I was on prednisone for

seven years when I was younger, it took me an entire year to get off from that

drug, so slooooow and easy might help. I'm following the steps on this diet and

am still experiencing D and feel a little weak, but I'm experiencing almost no

brain fog. I also buy as much organic food as possible. Is stress from anything

else acerbating your symptoms? I hate to be preachy, but praying and asking God

for help really helped me also. Hope things get better soon. Traci

August 23, 2010

>

> Well, since I hadn't had my period in almost a year, my gynecologist wanted

me to try a month of birth control, which I was hesitant about but finally

decided to. About a week into the pills I started to get worse, more fevers,

worse D and more bathroom trips. Then last week when I started the Humira, I got

even worse, higher fevers now (101.4), lots of D, lots of nocturnal BMs. I

finally caved and asked to be put back on Prednisone- yes, that bad, but I want

to stay out of the hospital, otherwise I don't think I could stick to the diet.

>

As far as birth control goes, talk to your doctor about NuvaRing. I switched

last year before I even found the diet, because I felt like it would be one less

pill for my liver and kidneys to process (since I was taking high doses of

Lialda for UC, among many rounds of Prednisone, and looking to the future having

to try Imuran (which I am now on as well)). The ring took a couple months to

stabalize my cycle on, just as any birth control switch might, but as long as

your insurance covers it, I'd give it a try, one less " illegal " to worry about.

Prednisone is a nasty beast, but a necessary evil when you need it, be sure to

try one of the more gradual tapers when you are ready to go off of it that have

previously been discussed on this list, as it will minimize the " crash " you will

feel from the tapering.

>

> I will be honest when I say that I did not follow the stages, I just ate what

was legal. I seemed to tolerate most things, but then my flares get worse and

then honestly I feel like no matter what I eat my symptoms are bad. Will I still

heal if I don't follow the stages?

>

While I agree with others that the stages are a guideline and that everyone will

have varying results, I would like to note that if you are doing a lot of nut

flours, that might be something to back off for awhile. I am approaching my 6mo

mark and have had a flare now for 2 weeks, after 2 weeks of finally having

" trophy " BMs which I too thought may never happen at the 2mo mark. I went

through the 3mo flare also, for about 2-3 weeks, and that time, and this time, I

think think the biggest thing that has helped me is avoiding the nut flours (as

hard as that is) letting healing resume w/out scratching it with a sand-paper

like substance. Again, not sure if you are doing nut flours, but if you are, try

pulling it back.

>

> So I guess I just want some reassurance that you think the diet still may work

for me, despite my being on it for this long plus meds and getting worse. Do you

think I'm a hopeless case? I'm so saddened right now, I feel like I do all that

I can within my power to help my disease- follow the diet, take my meds, rest,

exercise etc., and yet I just get worse. I don't really know what else I can do,

and I originally got on the diet in the hopes of getting off my meds. Now my

standards are so low that I just stick with the diet to hopefully stave off a

hospital stay.

>

I would highly recommend sticking with the diet & whatever meds you feel you

need. On the topic of meds, I too didn't think this or that was working for me,

but in a recent 4 week experiment to decrease dosage, I think it is contributing

to my recent flare, so while the meds may not have been ENOUGH on their own

before I found this diet, I think they play their own part in this symphony to

healing my UC, even though the diet clearly takes center stage in my particular

case. I KNOW the diet works for so many, and I will echo others again that you

mileage may vary and healing takes longer for some than others, but through

trial and error I think you'll be able to implement SCD uniquely for your own

situation and see results (even the smallest of results are noteworthy).

> Sorry I'm such a bummer, but I don't know what to do. Do you think it was

possibly the birth control that made things worse, and if so, how do I make it

better? Or do you think I'm just one of the cases that the diet doesn't work

for?

>

You are not a bummer, I think most of us come to find the diet out of

desperation and despair, I was in a funk for so long that all aspects of my life

were impacted, but after I got through my first flare while on the diet, I was

so empowered by how much faster my body healed from a flare with the tools I now

had from the SCD that it gave me so much motivation to continue with the diet. I

still have a long way to go, but am so thankful for this diet and this online

community. My advice to you is to give it more time, perhaps post the foods you

are currently eating so we can give you hints and tips on what you might want to

try tweaking. This community is so very helpful, I hope you are able to lean on

it for strength when you are feeling overwhelmed by your condition.

All the best.

-Dana UC since 2007

SCD since 3/2010

August 23, 2010

> Hi Mara,

>

>> You don't have to follow the stages as long as you eat what you tolerate -

but you should redo intro for

>> a few days, make lots of broths. And then eat only your really easy foods

for a bit after that.

>

> Good to know about the stages. I'll try the intro again for a few days. Should

I be noticing a difference, because when I did before, I didn't really notice

any change?

Could go either way - you might not notice at this point if your symptoms are

that bad. I'd keep on doing broth though daily or every other day for a few

weeks to help get rid of the inflammation. And eating really soft food, pureed,

etc.

> If your issue is overgrowth of yeast - which can occur during the late second

month after all the easy to

>> kill bacteria have died off (happened to me - although I did not realize it

at the time) - then you may

>> have to go low carb or low fructose for a while.

>>

>> Also, start cooking broths and eat those.

>

> OK, I can see understand that. So, do you have any guidelines on how low carb

I need to go and for how long? Or is it just an individual thing?

If it is a yeast thing - there is stuff in the files about an anti-yeast diet.

I would also try

s. boulardii. I used diflucan and candex as well while I was doing anti-yeast

earlier

in the year after steroid use. Be aware, however, that those cause plenty of

nasty

feeling dieoff. And for diflucan you need a script.

If it is low-fructose, google for a fructose chart of fruit, and only eat the

ones that are low

or that have even levels of fructose and glucose.

Mara

August 23, 2010

At 09:43 AM 8/23/2010, you wrote:

I will be honest when I say that

I did not follow the stages, I just ate what was legal. I seemed to

tolerate most things, but then my flares get worse and then honestly I

feel like no matter what I eat my symptoms are bad. Will I still heal if

I don't follow the stages?

Also, I get confused, because I don't know if I need to go low carb or

not. I thought the premise of the diet is the type of carb and not

necessarily low carb. I can do low carb for a while, but I find it hard

to go extremely low carb for long periods of time, and I'm worried about

it messing up my thyroid (which I've read that long periods of low carb

without carb refeeds can).

First of all, be aware the birth control pills can be related to gut

issues. As a matter of fact, I had no gut issues until I went on birth

control pills in 1976. If I'd known then what I know now, I'd've

opted for another method.

Just for curiosity's sake, are you significantly underweight? If you are,

then that can be a factor in your lack of a menstrual cycle.

The stages did not exist when I started SCD. I was already almost well

when the stages were developed. The stages are a guide for those people

who want everything spelled out for them. They can be helpful, as a

guide, but they are not, by any means, mandatory to getting

well.

The premise of SCD is, indeed, SPECIFIC carb, not LOW carb. Some people

do feel better going low, as well as specific carb, but only the specific

carb is required.

What you need to do is to develop a core group of food which are easy for

YOU to digest. That way, you can drop back a bit if you start having

issues.

—

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

August 23, 2010

When I was on Humira, it took between 2-3 months to work. I was even in the

hospital about 2 weeks before it kicked in. Humira helped me quite a bit, and

then I started SCD on top of that. I've now been off Humira for almost a year,

and am doing okay with just SCD and Pentasa.

Holly

Crohn's

SCD 12/01/08

>

> I'm on the Humira, because I don't know for sure if the Humira was causing the

worse symptoms or if it was just coincidence, because things were getting worse

day by day. I was told it can take up to 3 months to see if it has any effect,

so I thought I'd stick it out until then. I'm desperate for things to help,

because I don't have that many sick days left and I can't keep missing work. But

definitely, if I see a pattern that I feel worse when taking it, I will get off.

I just did my first dose.

>

> Amber

>

August 23, 2010

So I guess I just want some reassurance that you think the diet still may work for me, despite my being on it for this long plus meds and getting worse. Hey Amber!! I just want to give you a hug, because I know exactly how you feel. Just totally hopeless and depressed and buried under everything. I didn't think the diet was ever going to work for me either, because even after a YEAR on the diet, I had to be on prednisone to control the D. Even at the beginning of the diet, I never really noticed any improvement. Now, finally, after a year and a few months, I think I'm going to be able to wean off the prednisone and keep my BMs relatively stable. I'm on 7.5 mg now, which is low for me, and am having one semi-solid BM a day. I honestly don't know what turned things around, but it's kind of ironic since I just had a colonoscopy. I was really bad right after that, even with a little blood, but I pretty quickly improved. It might be because I just finished a bottle of boulardii, and maybe that helped balance my gut flora a little. I've taken boulardii before, but never really noticed it doing anything. I think it might've actually done something this time because instead of taking two a day, like I always did, I would take 4 at a time towards the end of the bottle. Maybe that really shocked my system. Also, now I'm pureeing all my veggies and I took out cheese. I have no idea what of that, if any, is helping me now, but something is. It could be that after being on the diet for so long it's finally my time to get better.I just want to say that I have been in your position many times, and not that long ago, and I know exactly how you feel. When you feel like that, no matter how much you try to look on the bright side, it seems impossible, and everything just seems hopeless. Just hang in there! I know that 6 months seems like a really long time, just like to me one year seems like a really long time, but I've learned that it's not very long in the grand scheme of things. Sometimes, no matter what you do with your diet, you can't control your symptoms. That's where prednisone comes in handy, so you don't waste away while you wait for more time to pass. I think that sometimes with this diet, after you've done all you can, you really just need to give it time. If you need the meds now, which it definitely sounds like you do, then use them, but remember that it won't be forever. Meanwhile, what are you doing to exercise? I've found that any intense exercise makes me feel a little worse, but walking seems to feel pretty good. Also, epsom salt baths really do help, especially with achiness from fevers. You could get a bottle of boulardii and after you start slow to make sure you don't get too much die-off, you can quickly build up to as many as 4 or 5 pills a day, or whatever you can seem to handle. Really hit the bad bugs hard. I've also been meditating every night, which is really difficult but I'm hoping I'll get better with practice. Oh, and if you're a Christian, read the Bible and pray! That helps me more than anything else. And even if you aren't a Christian you could give it a shot =) Anyways, I really hope you feel better soon, and meanwhile, don't lose hope! Cheers!Alyssa 16 yo UC April 2008, dx Sept 2008SCD June 2009 (restarted)Prednisone 7.5 mg

August 24, 2010

>

> I will be honest when I say that I did not follow the stages, I just ate what

was legal. I seemed to tolerate most things, but then my flares get worse and

then honestly I feel like no matter what I eat my symptoms are bad. Will I still

heal if I don't follow the stages?

Amber, I failed the first time I started SCD because I did exactly what you did.

I just jumped right in. The stages are just a guide and don't work for everyone.

This is how I did the diet: Days 1 - 5, chicken soup (started with chicken and

broth only, then pureed the veggies back in and by day 5 or so I could eat the

veggies), homemade orange or grape gelatin (1 cup juice, 3 cups water), boiled

eggs, colby jack cheese, orange or grape juice diluted 100%. After day 5, I

started expanding a little and trying new things. Almost immediately, I would

react to most things. I did tolerate bananas and cooked apples well though. You

have to take it slow to give your guts time to heal. Don't worry about " stages " ,

just eat one new thing, peeled, deseeded and well cooked and wait 3 days to see

if you react to it. Eat things you like.

> Also, I get confused, because I don't know if I need to go low carb or not. I

thought the premise of the diet is the type of carb and not necessarily low

carb. I can do low carb for a while, but I find it hard to go extremely low carb

for long periods of time, and I'm worried about it messing up my thyroid (which

I've read that long periods of low carb without carb refeeds can).

Why do you think you need to do low carb? I don't worry about anything like

that. I've always just eaten what I wanted not worrying about anything like

that. Now, if you have yeast issues, you will have to go low carb to get them

under control.

> So I guess I just want some reassurance that you think the diet still may work

for me, despite my being on it for this long plus meds and getting worse. Do you

think I'm a hopeless case? I'm so saddened right now, I feel like I do all that

I can within my power to help my disease- follow the diet, take my meds, rest,

exercise etc., and yet I just get worse. I don't really know what else I can do,

and I originally got on the diet in the hopes of getting off my meds. Now my

standards are so low that I just stick with the diet to hopefully stave off a

hospital stay.

You are not a hopeless case. You do sound like someone that was looking for an

overnight fix as I was the first time the diet failed for me. Just slow down and

start over. The " stages " are the same thing as an introduction diet. You have to

introduce one food at a time to see what you react to. If you react to something

today, you might not next month. I could not eat broccoli the first 2 years on

the diet, but now I can have it once a week or so. It takes time to heal. Don't

be so hard on yourself though. We all mess up in the beginning. Not one of us is

perfect. Some of us continue to mess up over and over and impede our healing (I

ate bread pudding at the Christmas Party and have been taking things pretty slow

since almost 9 months).

Misty Kimble

CD - no meds

SCD - Jan 2008

August 24, 2010

I rarely buy organic and I'm doing good on the diet. Don't feel like that is

holding you back. I don't have the $$$ to buy organic at the time.

As for the stress, I think that's an individual thing. For me, stress does make

my symptomatic but not terribly so.

Misty Kimble

CD - no meds

SCD - Jan 2008

>

> I try to buy mostly organic as well. Honestly, I don't think stress is a

factor. I actually get stressed from the symptoms and it doesn't seem so much

the other way around. But you're right about praying. I do, but I haven't been

as good about it lately, so maybe that's the missing piece. Thanks for your tips

and advice.

>

> Amber

August 24, 2010

Thanks for letting me know, Holly. I am/was getting very discouraged, but at

least I know there is hope. I'm sorry you had to be hospitalized though! I'm so

happy to hear you're doing well with just Pentasa and SCD.

Take care,

Amber

> >

> > I'm on the Humira, because I don't know for sure if the Humira was causing

the worse symptoms or if it was just coincidence, because things were getting

worse day by day. I was told it can take up to 3 months to see if it has any

effect, so I thought I'd stick it out until then. I'm desperate for things to

help, because I don't have that many sick days left and I can't keep missing

work. But definitely, if I see a pattern that I feel worse when taking it, I

will get off. I just did my first dose.

> >

>

> > Amber

> >

>

August 25, 2010

Thanks Amber! Hang in there, and hopefully the Humira will kick in soon. Did you

do the loading doses (4 pens at once, then 2 weeks later 2 pens, then just 1

every 2 weeks)?

I felt like Humira helped me get a good start on the diet. I still had problems

(like constipation, fistulas, & fissures), but not near the problems I had

pre-Humira. Since Humira had already started the healing process, the diet had

an easier time of propelling me towards even more healing (no more constipation,

fistulas, & fissures).

My GI is upset that I stopped the Humira. She would be even more upset if she

knew I dropped it last September (right before surgery for scar tissue), not

this May ;-). My colonoscopy this fall will tell for certain, but I don't think

that I lost ground by stopping it.

Holly

> >

> > When I was on Humira, it took between 2-3 months to work. I was even in the

hospital about 2 weeks before it kicked in. Humira helped me quite a bit, and

then I started SCD on top of that. I've now been off Humira for almost a year,

and am doing okay with just SCD and Pentasa.

> >

> > Holly

> > Crohn's

> > SCD 12/01/08

August 25, 2010

Hi Marilyn,

I'm glad to know the stages aren't set in stone and mandatory for healing. I've

always felt kind of guilty for " moving ahead " when maybe I shouldn't have.

As far as my period/weight, before Crohn's I was regular but did experience 3

instances where I either lost weight too quickly or exercised too hard and

skipped a few months, but it always came back. My weight has fluctuated a lot

since my diagnosis, so I know my cycle is probably thrown off partially because

of that. I've lost weight in this flare, but I'm by no means seriously

underweight for my body type. At least I'm done with the bc pills for now, and

it did start a period, but I wonder if it will recur next month. We'll see.

Thanks for your input. I'm so sorry that the pills were the cause of your gut

issues! They certainly did not agree with my body either.

Take care,

Amber

>

> First of all, be aware the birth control pills

> can be related to gut issues. As a matter of

> fact, I had no gut issues until I went on birth

> control pills in 1976. If I'd known then what I

> know now, I'd've opted for another method.

>

> Just for curiosity's sake, are you significantly

> underweight? If you are, then that can be a

> factor in your lack of a menstrual cycle.

>

> The stages did not exist when I started SCD. I

> was already almost well when the stages were

> developed. The stages are a guide for those

> people who want everything spelled out for them.

> They can be helpful, as a guide, but they are

> not, by any means, mandatory to getting well.

>

> The premise of SCD is, indeed, SPECIFIC carb, not

> LOW carb. Some people do feel better going low,

> as well as specific carb, but only the specific carb is required.

>

> What you need to do is to develop a core group of

> food which are easy for YOU to digest. That way,

> you can drop back a bit if you start having issues.

>

> — 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

>

August 25, 2010

Hey Alyssa,

You are such a sweet soul. Thank you so much for your encouragement. You are

much braver than I am, and you definitely are an inspiration on how to

persevere.

You're right, 6 months isn't really a long time. I need to be patient. I get

tunnel vision when I start feeling really bad, and I fear that I'll be one of

those helpless cases. But you're right, I need to be patient, and I do need to

pray and meditate. I think that's my weakest area as far as helping with my

healing, and I need to concentrate on that.

And I keep hearing about S. Boulardii, so I think I need to look into that. And

I have cut back on my exercise intensity due to the flare, so hopefully that

helps.

I really appreciate your kind words and encouragement. I don't know what I'd do

without this group!

Take care,

Amber

>

> > So I guess I just want some reassurance that you think the diet

> > still may work for me, despite my being on it for this long plus

> > meds and getting worse.

>

> Hey Amber!! I just want to give you a hug, because I know exactly how

> you feel. Just totally hopeless and depressed and buried under

> everything. I didn't think the diet was ever going to work for me

> either, because even after a YEAR on the diet, I had to be on

> prednisone to control the D. Even at the beginning of the diet, I

> never really noticed any improvement. Now, finally, after a year and a

> few months, I think I'm going to be able to wean off the prednisone

> and keep my BMs relatively stable. I'm on 7.5 mg now, which is low for

> me, and am having one semi-solid BM a day.

>

> I honestly don't know what turned things around, but it's kind of

> ironic since I just had a colonoscopy. I was really bad right after

> that, even with a little blood, but I pretty quickly improved. It

> might be because I just finished a bottle of boulardii, and maybe that

> helped balance my gut flora a little. I've taken boulardii before, but

> never really noticed it doing anything. I think it might've actually

> done something this time because instead of taking two a day, like I

> always did, I would take 4 at a time towards the end of the bottle.

> Maybe that really shocked my system. Also, now I'm pureeing all my

> veggies and I took out cheese. I have no idea what of that, if any, is

> helping me now, but something is. It could be that after being on the

> diet for so long it's finally my time to get better.

>

> I just want to say that I have been in your position many times, and

> not that long ago, and I know exactly how you feel. When you feel like

> that, no matter how much you try to look on the bright side, it seems

> impossible, and everything just seems hopeless. Just hang in there! I

> know that 6 months seems like a really long time, just like to me one

> year seems like a really long time, but I've learned that it's not

> very long in the grand scheme of things. Sometimes, no matter what you

> do with your diet, you can't control your symptoms. That's where

> prednisone comes in handy, so you don't waste away while you wait for

> more time to pass. I think that sometimes with this diet, after you've

> done all you can, you really just need to give it time. If you need

> the meds now, which it definitely sounds like you do, then use them,

> but remember that it won't be forever.

>

> Meanwhile, what are you doing to exercise? I've found that any intense

> exercise makes me feel a little worse, but walking seems to feel

> pretty good. Also, epsom salt baths really do help, especially with

> achiness from fevers. You could get a bottle of boulardii and after

> you start slow to make sure you don't get too much die-off, you can

> quickly build up to as many as 4 or 5 pills a day, or whatever you can

> seem to handle. Really hit the bad bugs hard. I've also been

> meditating every night, which is really difficult but I'm hoping I'll

> get better with practice. Oh, and if you're a Christian, read the

> Bible and pray! That helps me more than anything else. And even if you

> aren't a Christian you could give it a shot =) Anyways, I really hope

> you feel better soon, and meanwhile, don't lose hope!

>

> Cheers!

> Alyssa 16 yo

> UC April 2008, dx Sept 2008

> SCD June 2009 (restarted)

> Prednisone 7.5 mg

>

August 25, 2010

LOL, I love your visuals, Alyssa! Thanks for the tips on the fruit consumption.

I can go overboard with fruit at times, so I need to watch it. But I can

hopefully chase the little yeasties away with the big bad garlic, as you say!

Amber

>

> > OK, I can see understand that. So, do you have any guidelines on how

> > low carb I need to go and for how long? Or is it just an individual

> > thing?

>

> I eat fruit (usually strawberries, bananas, cherries) once a day in my

> smoothie, and I have a little honey in my baked goods. I don't worry

> too much about how many carbs I'm eating, though I do stick to the

> once a day fruit; not necessarily because of yeast, but because I

> think that too much sugar is bad for many things, even if it's

> natural. I focus more on eating things that will kill the yeast, like

> the boulardii, garlic, and coconut oil. I tend to try to think through

> things logically, and the way I see it, the yeast will die a lot

> faster from me outright killing them than trying to starve them.

>

> I picture the yeast coming out to begin to feast on little banana bits

> in my gut, and then just as they're chewing their first little

> destructive mouthful, the big bad garlic or coconut oil comes along

> and they just drop dead =) Otherwise, it seems like they'd be hanging

> around, eating what little comes by them, gradually dying from

> starvation. I have no idea if this is actually what's going on inside

> me, but I can usually get a pretty good sense of what my body is

> doing, and I feel like I'm fighting the yeast with what I'm doing

> currently.

>

> Hope that helps shed some light, though everyone IS different and what

> works for me may not work for others =)

>

> Cheers!

> Alyssa 16 yo

> UC April 2008, dx Sept 2008

> SCD June 2009 (restarted)

> Prednisone 7.5 mg

>

August 25, 2010

Thanks, Misty! You're right in that I probably rushed ahead too quickly, and I

definitely need to be more patient. I guess I thought that by 6 months I

wouldn't feel so terrible, especially with being on the diet combined with all

these meds. I must admit I am jealous of the people who can be med free and just

stay on the diet. Maybe someday for me! I'm so glad it's working for you, and

thanks again for the encouragement!

Take care,

Amber

> >

> > I will be honest when I say that I did not follow the stages, I just ate

what was legal. I seemed to tolerate most things, but then my flares get worse

and then honestly I feel like no matter what I eat my symptoms are bad. Will I

still heal if I don't follow the stages?

>

> Amber, I failed the first time I started SCD because I did exactly what you

did. I just jumped right in. The stages are just a guide and don't work for

everyone. This is how I did the diet: Days 1 - 5, chicken soup (started with

chicken and broth only, then pureed the veggies back in and by day 5 or so I

could eat the veggies), homemade orange or grape gelatin (1 cup juice, 3 cups

water), boiled eggs, colby jack cheese, orange or grape juice diluted 100%.

After day 5, I started expanding a little and trying new things. Almost

immediately, I would react to most things. I did tolerate bananas and cooked

apples well though. You have to take it slow to give your guts time to heal.

Don't worry about " stages " , just eat one new thing, peeled, deseeded and well

cooked and wait 3 days to see if you react to it. Eat things you like.

>

> > Also, I get confused, because I don't know if I need to go low carb or not.

I thought the premise of the diet is the type of carb and not necessarily low

carb. I can do low carb for a while, but I find it hard to go extremely low carb

for long periods of time, and I'm worried about it messing up my thyroid (which

I've read that long periods of low carb without carb refeeds can).

>

> Why do you think you need to do low carb? I don't worry about anything like

that. I've always just eaten what I wanted not worrying about anything like

that. Now, if you have yeast issues, you will have to go low carb to get them

under control.

>

> > So I guess I just want some reassurance that you think the diet still may

work for me, despite my being on it for this long plus meds and getting worse.

Do you think I'm a hopeless case? I'm so saddened right now, I feel like I do

all that I can within my power to help my disease- follow the diet, take my

meds, rest, exercise etc., and yet I just get worse. I don't really know what

else I can do, and I originally got on the diet in the hopes of getting off my

meds. Now my standards are so low that I just stick with the diet to hopefully

stave off a hospital stay.

>

> You are not a hopeless case. You do sound like someone that was looking for an