Re: Thinking of terminating the diet

[Guest guest]

Hi ,

I am new the diet but I noticed that a lot of the responses to your questions

involved allergy-triggered symptoms.

I have had UC since last June and avoided meds until December when it got really

bad and I needed a blood transfusion and prednisone 40mg. My bleeding didn't

stop until I was on mesalamine, which it turned out I was allergic to and broke

out in a " drug rash. " When I stopped that I was put on allegra (day and night)

and my bleeding did not return until the day after I stopped taking allegra,

since my rash was mostly gone and flaking off.

My bleeding got better but then worse again when I tapered off the prednisone,

never completely going away. I asked my naturopath (who put me on the diet) if

she thought taking the allegra again would help. She said try it so I did. I had

gone back up to 5mg prednisone three days in a row, with fluctuating symptoms -

one day 2bms with blood, next day 4. I took the allegra last night and have had

only 1bm today (with blood still), and feel much better physically and have a

little more energy.

It would make sense that if sensitivies and allergies trigger symptoms, that

antihistamines could help with those reactions. I'm not sure if other people

have experimented with this yet, but it was a new idea to both my naturopath and

my gastroenterologist.

I will post later if it turns out not to be working. Just a thought for now.

Kat

27

Dx UC June 2009

SCD since Feb 2010

Prednisone, allegra, rhodiola rosea, other suppliments

>

>

>

> Hello All,

>

>

>

> I in no way want to stir doubt in anyone's minds.  I'm sorry if this email

does this.  I just really need some feedback at this point.

>

>

>

> I've been grappling with some questions to which I cannot think of good

answers.  I'd value the feedback from this group.  I have definitely seen some

improvement with this diet, but have not had a complete remission yet.  I

haven't expected one yet though, as I've only been on the diet for 4 1/2 months.

>

>

>

> I've had UC symptoms for approximately 11 years and have had an official

diagnosis for approximately 6 years.  Shortly after my dx and starting

medication I had a complete remission.  I was not on the diet at this time. 

This remission lasted 2-3 years.  For some reason the idea just hit me the

other day.  If this diet is good for this illness, why did I go into remission

yet eat all the things that I shouldn't have?  My GI doctor told me years ago

that there is no proof about diet, but said that I should certainly avoid

anything that seemed to aggrivate it.  He did mention that the illness will go

on a natural increase and decrease in symptoms and periods of remission. 

What's to say that when one is newly diagnosed, they immediately go onto the

diet and then experience a natural remission, but attribute it to the diet? 

Has anyone been on this diet for 10 years or so and can say that they've

consistently experienced decreased symptoms that can't be attributed to the

natural cycle of the illness?

>

>

>

> Some other questions that I have:  Perhaps this diet is good for getting rid

of the extra bacteria in the GI tract.  However, does that do anything to stop

my immune system from attacking my colon?  Perhaps the bacteria is a defense

mechanism that protects the tissue?

>

>

>

> No surprise, I'm experiencing a flare right now.  I just wanted soft foods to

eat, but all that was available to me at my home was fruit, vegetables, white

beans, nuts, eggs, and meat.  Not comfort foods and mostly things harsh on

one's symptoms.  I know that I can go back to chicken, chicken soup, and cooked

carrots.  But rice seems like it would be light on my system.

>

>

>

> I value this listserv group and value your thoughts.  I'm not going off the

diet yet, but thinking about it.  I have lost about 15 pounds on this diet,

which I'm very happy about.  I've finally gone from chunky to slendor and don't

want to go back to chunky.  I just appreciate your thoughts right now.

>

>

>

> UC 11 years, dx for 6

>

> On Colazol 3 750mg capsules 3Xdaily and nightly rowasa enemas

>

[Guest guest]

> I value this listserv group and value your thoughts. I'm not going off the diet yet, but thinking about it. I have lost about 15 pounds on this diet, which I'm very happy about. I've finally gone from chunky to slendor and don't want to go back to chunky. I just appreciate your thoughts right now. Hi ,You say in your post that you have had some improvement on the diet, but not enough to convince you it's the diet, and not the natural course of the illness? For me, just knowing that this is a healthier way to eat is enough to keep me on the diet, whether if affects my disease long term or not (although I"m sure it will). I don't know what your diet was like before this, but don't you feel better knowing you're feeding your body pure, natural foods?As far as your question about whether the diet stops your body from attacking your colon. I think the theory is that the bacteria produce toxins that harm your colon, so your body wants to get rid of them. However, the tissues/substance that makes up the bacteria is very similar to what makes up the lining of our intestine. Your immune cells get confused, and start attacking both the bacteria and your colon. Therefore, if you restore the balance of bacteria, your body won't feel a need to fight it, and therefore will stop accidentally fighting your intestinal lining. (Somebody correct me if I'm wrong on this)A question I think of is this: even if the diet isn't enough to put you in full remission by itself, would you really be better off WITHOUT the diet? Also, do you feel like your disease will be able to be controlled long term with only meds? Four/five months is a very short time to be on the diet, especially short for you to already be eating things like beans, which are very hard for most to digest. Also, if you feel so much happier about the weight you're at on this diet, why not stay on it for that alone? It seems that just by dropping those 15 pounds, your body is telling you that it likes this new way of eating better. Even if you do decide to go off the diet, remember we'll always be here if you decide to come back! Peace =)Alyssa 15 yoUC April 2008, dx Sept 2008SCD June 2009 (restarted)Azathioprine 50 mg 1x per dayPrednisone 40 mg 1x per day

[Guest guest]

Just thought I'd mention that the original post is from March 2009. I think

probably made up her mind a long time ago ;-)

Holly

Crohn's

SCD 12/01/08

[Guest guest]

Just thought I'd mention that the original post is from March 2009. I think probably made up her mind a long time ago ;-)? Then why did somebody reply to it just now? That makes more sense though, because I saw the "Re: Thinking of terminating the diet" subject line and was confused because I never got the original post. Peace =)Alyssa 15 yoUC April 2008, dx Sept 2008SCD June 2009 (restarted)Azathioprine 50 mg 1x per dayPrednisone 40 mg 1x per day

[Guest guest]

The transfusion/pred connection was simply illustrating that I was so ill and my

UC was so bad and I was losing so much blood that I needed a transfusion and to

help get my symptoms under control (so the bleeding could stop) I needed a high

dose of prednisone. If they'd put me at 40 mgs I wouldn't have had any effect

at all. I wish I could say that 20 mgs was the max I could tolerate! It would

really be nice not to have to deal with the extreme side effects when I flare

bad enough to warrant going back on the steriod So yes, " small amount " is

exactly what I meant.

Stacey

>

>

> ______________________________

>

> A funny, touching gift book for cat lovers. Signed copies, free shipping

> (U.S., reduced elsewhere): Confessions of a Cataholic: My Life With the

> 10 Cats Who Caused My Addiction by n Van Til

> www.wordpowerpublishing.com

>

[Guest guest]

The transfusion/pred connection was simply illustrating that I was so ill and my

UC was so bad and I was losing so much blood that I needed a transfusion and to

help get my symptoms under control (so the bleeding could stop) I needed a high

dose of prednisone. If they'd put me at 40 mgs I wouldn't have had any effect

at all. I wish I could say that 20 mgs was the max I could tolerate! It would

really be nice not to have to deal with the extreme side effects when I flare

bad enough to warrant going back on the steriod So yes, " small amount " is

exactly what I meant.

Stacey

>

>

> ______________________________

>

> A funny, touching gift book for cat lovers. Signed copies, free shipping

> (U.S., reduced elsewhere): Confessions of a Cataholic: My Life With the

> 10 Cats Who Caused My Addiction by n Van Til

> www.wordpowerpublishing.com

>

[Guest guest]

In response to how I had an allergic reaction while on prednisone: I was

allergic to mesalamine, a drug administered one week after my first dose of

prednisone. I took it for a whole month before I broke out in the rash. I

thought the rash was from nystatin, but the docs thought it was more likely a

rash caused by a drug that was absorbed by the body as opposed to nystatin,

whose molecules are apparently too large to absorb through digestion. My thought

was, what about leaky gut? Most likely I have that going on with UC...but they

had to make a judgement call. I was taken on nystatin and mesalamine and put on

clotrimazole for thrush instead of nystatin, but just stopped that and went on

the yeast elimination diet and my thrush is waaaay better! So yes, the reaction

was severe - burning/itching/flaking/puffy all over my gut area first, then

everywhere including eyelids and inside nose/mouth. Swelling in my abdomen went

down afterward, so I think it was likely the mesalamine all along.

Anyway! More than anyone wanted to know! Maybe this will help someone searching

for drug rashes in the future!

> > >

> > >

> > >

> > > Hello All,

> > >

> > >

> > >

> > > I in no way want to stir doubt in anyone's minds.  I'm sorry if this

email does this.  I just really need some feedback at this point.

> > >

> > >

> > >

> > > I've been grappling with some questions to which I cannot think of good

answers.  I'd value the feedback from this group.  I have definitely seen some

improvement with this diet, but have not had a complete remission yet.  I

haven't expected one yet though, as I've only been on the diet for 4 1/2 months.

> > >

> > >

> > >

> > > I've had UC symptoms for approximately 11 years and have had an official

diagnosis for approximately 6 years.  Shortly after my dx and starting

medication I had a complete remission.  I was not on the diet at this time. 

This remission lasted 2-3 years.  For some reason the idea just hit me the

other day.  If this diet is good for this illness, why did I go into remission

yet eat all the things that I shouldn't have?  My GI doctor told me years ago

that there is no proof about diet, but said that I should certainly avoid

anything that seemed to aggrivate it.  He did mention that the illness will go

on a natural increase and decrease in symptoms and periods of remission. 

What's to say that when one is newly diagnosed, they immediately go onto the

diet and then experience a natural remission, but attribute it to the diet? 

Has anyone been on this diet for 10 years or so and can say that they've

consistently experienced decreased symptoms that can't be attributed to the

natural cycle of the illness?

> > >

> > >

> > >

> > > Some other questions that I have:  Perhaps this diet is good for getting

rid of the extra bacteria in the GI tract.  However, does that do anything to

stop my immune system from attacking my colon?  Perhaps the bacteria is a

defense mechanism that protects the tissue?

> > >

> > >

> > >

> > > No surprise, I'm experiencing a flare right now.  I just wanted soft

foods to eat, but all that was available to me at my home was fruit, vegetables,

white beans, nuts, eggs, and meat.  Not comfort foods and mostly things harsh

on one's symptoms.  I know that I can go back to chicken, chicken soup, and

cooked carrots.  But rice seems like it would be light on my system.

> > >

> > >

> > >

> > > I value this listserv group and value your thoughts.  I'm not going off

the diet yet, but thinking about it.  I have lost about 15 pounds on this diet,

which I'm very happy about.  I've finally gone from chunky to slendor and don't

want to go back to chunky.  I just appreciate your thoughts right now.

> > >

> > >

> > >

> > > UC 11 years, dx for 6

> > >

> > > On Colazol 3 750mg capsules 3Xdaily and nightly rowasa enemas

> > >

> >

>

[Guest guest]

Hi Kat,

My life has been put on hold as well. I was on Canada Pension Plan disability for about ten years with a diagnosis of CFS (intestinal issues were simmering in the background for many years already). I was also in a pressure cooker of a marriage and had been desperately unhappy with a chronic fist of tension in my gut for many years. We split, my two sons came with me. Then after almost a year we tried a reconciliation at which point I started having the most horrific panic attacks. I truly believed I was dying when the first one came. I literally did not sleep day or night for a few months, could barely eat. I became very skinny. The fear of dying kept hovering. My oldest son had to drive me to appointments. Finally after 7 months of that I saw that if I didn't make my final exit I may not survive at all and my precious boys for whom I was trying to make it work, would no longer have a mother.

I had to walk away from my children, leaving them with their father who offered me no support, and focus just on myself and getting better. Many people did not understand and judged me harshly. What kind of a mother would leave her children? I moved into a tiny basement suite with about $975 a month in disability payments. It was do or die. It took about a year for the panic attacks to mostly go away. Then I received notice that since my youngest son was soon to be turning 18 my disability payments were going down to $650/mo. I knew I could not survive on that and determined to re-enter the workforce after an absence of almost 20 years. This took me about a year. In 2003 I got full-time work at a bank. Almost every day of those 5 years that I worked there, I kept moving one foot in front of the other, many days not knowing how I'd make it through. But I had to because I had no other support net.

In Feb/08 my intestinal issues by that point were so overwhelming I had to quit work. By this time I was happily re-married and my husband said many times that if it got to the point where I just couldn't continue, it was okay. I have had huge stresses over finances and the burden I feel I've place on a new marriage My husband would glower at me if he read this. He is my biggest cheerleader and marvels at my tenacity to find answers. So now within a month or two I will be gradually starting a new line of work, keeping my fingers crossed that I will be able to do it. I am glad it won't be 9-5 to start with. I simply couldn't do it. DarleneIntestinal DysbiosisSCD 12 days

To: BTVC-SCD Sent: Tue, March 2, 2010 12:43:43 AMSubject: Re: Thinking of terminating the diet

n, thanks for the info about nettles - unfortunately I tried them this last summer and broke out in hives. My skin was peeling off for weeks! The transfusion was because I had lost half the blood that was normal, and I was severaly dehydrated since it hurt to drink water, so I was probably at a lower blood count than half really. My doctors didnt' want me to go home from the hospital because I'd had fainting/twitching spells for months and they were afraid I would fall and get brain damage, so I had to get more blood right then. The prednisone was to get the flair under control so I would stop bleeding 10 times/day. So, they were not related, just two very extreme cases. 40mg/day of prednisone was aweful, but according to the doctors I "tolerate it well." I suppose it is better than a lot of the other drugs out there. I already had to give up employment, since I was too weak to do anything since July, and could no longer

concentrate. But honestly, 40mg prednisone plus the anemia and pain finally made me get incompletes in school. This quarter has been touch and go with just 2 classes. I don't know how you guys have done it. I had to stop work this whole year almost and nearly quit school. Now with cooking all my food and being so fatigued all the time during this long, (long!) recovery time, all my good, non-fatigued hours are spent in the kitchen. Has anyone else had to quit their life in order to get through this? I know we are all different, and I have been sick for many years, so it is understandable to be lacking so much energy and just have to stop, but I wonder at the idea of going to a 9-5 job during this time. I'm more curious than anything what this has been like for people. Kat27dx UC June 2009SCD Feb 2010prednisone, iron, rhodiola rosea, other supplements

Yahoo! Canada Toolbar : Search from anywhere on the web and bookmark your favourite sites. Download it now!

[Guest guest]

Darla, what a great come-back story!  It's inspiring. 

 

I am trying to re-enter working since 2002 (actually 2004 when I wasn't approved by the insurance and was terminated for the third time).  It's hard, no references, rusty skills.  Lots of changes.  I was in the grocery store a few weeks ago and noticed two things.  A book of stamps is now $3 more than it used to be and to rent a carpet cleaner has gone from 10$ to 25$ where I live.  There's no telling what else I've missed from being home.  Just a little wake-up call ;-). 

 

I hope the diet works for you.

 

Debbie houston cd

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..

[Guest guest]

I was just informing new people that nettles are not SCD legal, since it's

likely they're not aware of it. They might prefer to take an antihistamine

that's compounded to be SCD legal rather then risk using an illegal.

Are there different types of nettles? We used to fight those nasty things every

year at our former home, and you had to be careful not to touch them or risk an

ugly rash. The neighbor kid got into them once, and it was not pretty! I can't

imagine ingesting something like that.

Holly

Crohn's

SCD 12/01/08

> >>

> >> Re: allergies. Kat, I would recommend trying nettle; it's an herb that's

> >> an effective antihistamine without side-effects. It may take several

> >> weeks

> >> to really get into your system for that you feel effects, but it does

> >> work

> >> for most people. I find it extremely effective. And once you've taken it

> >> for a while, when you need it again, your body will already be sort of

> >> " primed " to it, so it then works very quickly.

> >>

> >> 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

>