Re: Success Stories - Severe Crohn's

[Guest guest]

Hey Debbie,

My Crohn's/Colitis is not that great either.. On going in a constant flare for

13 years have never been in remission. I am by no means healed but before the

diet I was very close to having surgery for my colon and small intestine.

Various surgeons told me it would take a few surgeries to get it right as I have

many skip lesions and a lot of liquid in my bowels. I just felt I couldn't

gamble with my insides in such a way.. So I gave the diet a try..

I have some other major health issues so healing for me is a pretty long road.

I have been on the diet about a year and a half and from where I was my

improvements have been life altering for -me-. From going 40+ a day to the loo

and having horrible recurrent anal abscess to living in pain 24/7. All of that

is in the past. I do not pass out on the toilet anymore screaming in pain. I

go to the bathroom between 2-4 a day. I am no longer Anemic (yep!!) not needing

blood transfusions and I no longer have a constant fever. I have not been able

to resume a normal life but I can leave the house and be outside for hours at a

time and enjoy myself which is such a huge deal for me.

I have been on many medications and only Prednisone helped but sadly I am

dealing with consequences due to so many years of steroid usage. At my young

age I am dealing with bone loss issues.

Elaine said that some of us may need surgery as the damage from scar

tissue/stricturing etc might be too great for the diet to heal. My reasoning

has been that I want the diet to do " it's thing " and if I do need surgery- when

the doc goes inside they can know exactly which part needs to be removed without

the gambling. Elaine said that the surgery can give us a clean slate for

healing. I understand this now and I will see where I am next month.. as I have

a scope due begining of April and tomorrow I am having a small bowel series.

There are some great success stories with people with awful disease getting

better on this diet, some even healed.

There are great stories too of people who have had to have resections too.

Many of the people who have healed just don't hang online that much- I hope they

will speak up or drop a line your way to share their journey.

Also, Lucy from the Kitchen Shop had horrible UC and she was very close to

having her colon removed. She has now been on the diet 15 years. You could

certainly call her to speak with her too.

Good luck!

It's a hard change but so well worth it!

Jodi

[Guest guest]

Debbie,

The lady who was my mentor was told on diagnosis that her gut looked

" like bloody lace, " and surgery was highly recommended. She did

not, as she noted, want to lose important body parts.

She found SCD, and followed it absolutely fanatically, peeling and

cooking her veggies, broiling her meats, diluting any legal fruit juices,

and so forth. No commercial products other than what are permitted in

BTVC.

You have done an intro diet. What and when did you eat on the diet? Did

you keep a food diary? Are you currently keeping a food diary?

My mentor, btw, had another colonoscopy 14 months after her diagnosis.

Her doctor said that if he had not diagnosed her himself, he would not

have believe she was the same patient, because although she showed signs

of having had the disease, her lesions were healed.

FYI, my grandmother died of complications of diverticulitis. My mother

was just in the hospital and received a unit of blood because of bleeding

caused by diverticulitis. I, on the other hand, 7 years SCD, had a

colonoscopy in January, and had no sign of diverticulitis. Hurrah,

SCD!

—

Marilyn

New

Orleans, Louisiana, USA

Undiagnosed IBS since 1976, SCD since 2001

Darn Good SCD Cook

No Human Children

Shadow & Sunny Longhair Dachshund

[Guest guest]

Hi Marilyn:

Thank you so much for your email. It's so great having a network like this. That

is an amazing story. I really hope the diet works for me as I am not ready for a

colostomy bag at age 39.

Yes, I did the intro for five days. I was in a bad flare when I started the diet

(probably not the best time) and I go about 10-15bms per day, which certainly

increased last week during the intro.

This is what I ate:

Chicken soup with the pureed carrots

Cheesecake (with just Farmer's Cheese, eggs, and honey) I didn't have the

yogurtmaker at the time

A lot of Farmer's Cheese

Boiled chicken

Hamburger

Broiled Fish

Today is day 6. I just had some yogurt (since my yogurt maker recently arrived).

Moving forward, I'm not sure if I should start to go by the phases as listed in

pecanbread or just start to introduce things. I've heard that almond flour can

be irritating but also that it bulks up the stools...

I'm not keeping a food diary because I go about 10-15 times per day anyway (have

been for four years), and everything seems to affect me, so I don't know how I'd

be able to track what's causing the reactions at this point.

Thoughts?

Debbie

>

>

> Debbie,

>

> The lady who was my mentor was told on diagnosis

> that her gut looked " like bloody lace, " and

> surgery was highly recommended. She did not, as

> she noted, want to lose important body parts.

>

> She found SCD, and followed it absolutely

> fanatically, peeling and cooking her veggies,

> broiling her meats, diluting any legal fruit

> juices, and so forth. No commercial products

> other than what are permitted in BTVC.

>

> You have done an intro diet. What and when did

> you eat on the diet? Did you keep a food diary?

> Are you currently keeping a food diary?

>

> My mentor, btw, had another colonoscopy 14 months

> after her diagnosis. Her doctor said that if he

> had not diagnosed her himself, he would not have

> believe she was the same patient, because

> although she showed signs of having had the disease, her lesions were healed.

>

> FYI, my grandmother died of complications of

> diverticulitis. My mother was just in the

> hospital and received a unit of blood because of

> bleeding caused by diverticulitis. I, on the

> other hand, 7 years SCD, had a colonoscopy in

> January, and had no sign of diverticulitis. Hurrah, SCD!

>

>

>

> — Marilyn

> New Orleans, Louisiana, USA

> Undiagnosed IBS since 1976, SCD since 2001

> Darn Good SCD Cook

> No Human Children

> Shadow & Sunny Longhair Dachshund

>

[Guest guest]

Hi Debbie, I was also on 60mg pred when I started and my doc said my only solution was to go on Humira. I refused his offer and started the diet and am now off all meds for the first time in over 15 years. This diet works. It may take longer for some and I still have times of inflammation, but I'm much much better than I've ever been on meds. I'm sure sometimes surgery may be necessary, but this diet is a life saver. I've only been on it 8 months, but no more D and no more blood. My life is much better because of this diet.

My doctor assured me no diet could help me. He said I had a very bad disease and I was a very bad patient (because I refused the Humira). Now I have a managable disease and I'm no longer his patient (expcept for tests as needed) Best of luck to you. It works!!!

Ann,

Living in Italy

Undiagnosed Crohn's since 1977 Diagnosed 15 years

Sacroiliitis 25 years

Rheumatoid arthritis 25 years

Pyoderma Gangronosum 2 years

SCD since July, 2008

Meds: None

To: BTVC-SCD Sent: Wednesday, March 18, 2009 4:51:33 PMSubject: Success Stories - Severe Crohn's

I'm wondering if anyone can share some success stories they've had with doing the SCD while having a severe case of Crohn's or UC. I have Crohn's Colitis and my next step a full colectomy. I didn't get much encouragement from my GI doctor about this diet working in my particular situation. I'm wondering if this diet has worked on people with Crohn's as bad as mine, or if it mostly works on people who have mild to moderate disease. I am currently in a bad flare, am on 60mg of Prednisone (just upped it from 40), and just had a pretty awful doctor's appointment this morning laying out my bleak options. I have been doing the diet for a week now --- just finished the intro stage and was pretty much a mess the whole time (a lot of bm's, blood, etc.). I am wholeheartedly into this diet 100%, I just need some encouragement that it could work for someone like me.Thoughts? Thanks for anything you can

share.Debbie

[Guest guest]

Hi Lucy: Thanks for posting your message. It sounds like you are doing great on

the diet. I actually did talk to Lucy from Lucy's Kitchen Shoppe and she was

pretty inspiring too. I really hope the diet works for me too : )

[Guest guest]

Hi,

I would think about eliminating the DCCC for a little while. Perhaps you aren't

tolerating dairy. You could also try making goat milk yogurt instead of cow's

milk, to see if that makes any difference.

Possibly eliminate the carrots too. I have no problem with them, but I've read

that it can be an issue for a lot of people. As for replacements, have you tried

french cut green beans (beans minus the seeds)? Zucchini and butternut squash

could also be things to try, and which seem pretty tolerable for a lot of

people.

I hope you get things turned around soon!

Holly

Crohn's

SCD 12/01/08

>

> Hi Marilyn:

> Thank you so much for your email. It's so great having a network like this.

That is an amazing story. I really hope the diet works for me as I am not ready

for a colostomy bag at age 39.

>

> Yes, I did the intro for five days. I was in a bad flare when I started the

diet (probably not the best time) and I go about 10-15bms per day, which

certainly increased last week during the intro.

>

> This is what I ate:

>

> Chicken soup with the pureed carrots

> Cheesecake (with just Farmer's Cheese, eggs, and honey) I didn't have the

yogurtmaker at the time

> A lot of Farmer's Cheese

> Boiled chicken

> Hamburger

> Broiled Fish

>

> Today is day 6. I just had some yogurt (since my yogurt maker recently

arrived). Moving forward, I'm not sure if I should start to go by the phases as

listed in pecanbread or just start to introduce things. I've heard that almond

flour can be irritating but also that it bulks up the stools...

>

> I'm not keeping a food diary because I go about 10-15 times per day anyway

(have been for four years), and everything seems to affect me, so I don't know

how I'd be able to track what's causing the reactions at this point.

>

> Thoughts?

>

> Debbie

[Guest guest]

Hi Debbie,

When my dd was first dx'ed w. Crohn's, one of the dr's at Mass General told us

that they use this diet as the last resort before surgery, so take heart.....

Ellen (who will try to write more later)

11 y/o dd w. Crohn's

scd since 5/06. Med-free!!!!!

[Guest guest]

Hi Debbie,

Here is a re-post of something I previously wrote on here:

" When my dd first started the SC diet, I found success stories very

helpful, so here is ours:

My dd was dx'ed at age 8.5 w. a very severe case of Crohn's disease.

It took us three months to get a proper dx, and, by that time, her SED

rate was 95, which was so off-the-charts that, if the GI consult

didn't pan out, our next stop was the cancer docs, b/c it was most

likely to be lymphoma.....

She was hospitalized a week and we started the SC diet two days after

she was discharged. It's been (and I can't believe I can say this)

2 1/2 years.

Everyone has their trials and challenges when they start the diet.

Ours were that dh and I had been vegetarians since we were teens and

we felt that it was really impossible to eat only dairy and eggs and

have a complete diet on SCD. So we added some fish, chicken and meat

to our diets. Since we are Jewish and keep kosher, this meant adding

an entirely new set of dishes, pots, cabinets, etc, and re-learning

how to keep a kosher kitchen with two sets of dishes in it, something

I had not done since I was a child.

Our other big challenges were that we had a newborn baby (dd got sick

when I was 7 months pregnant), and one of our four children has an

anaphylactic allergy to nuts. Whee!

If we could make it through 2 1/2 years with this @#$^@#!$ against us,

I hope I have given some inspiration that, whatever challenges you are

facing in implementing the diet, it CAN be done.

We also had lots of good things to help us: very supportive family

(including my mother and brother-in-law who cooked all off dd's nut

products at their house so I wouldn't risk " dosing " the nut-allergic

child), a GI doc who STRONGLY supports the SC diet and tries to get

all his IBD patients to follow it, parents who came to help with the

baby [my dad] and help me figure out what the heck to cook [my mom],

and the financial ability (for a little while, at least!) to hire

someone to come 3 hours 3x/week to clean the kitchen that I repeatedly

and continually trashed cooking for six people.....It was also a big

help that dd has always been homeschooled so we didn't have to deal

with packing her lunches for school and dealing with tons of parties.

dd left the hospital on a ton of meds and has weaned off of

prednisone, flagyl, prevacid, and (the last one to go) Imuran. She's

been over 5 months totally med-free (no supplements either) with only

the SC diet for treatment. We have begun experimenting with her

having a few bites of things that aren't SCD, and she's had two

complete meals off for major family events (one was a year ago and her

GI doc gave approval since she had been symptom-free for quite a while).

I am starting to use some ingredients that are not completely SCD (I

bought my first package of pre-shredded cheese in three years

recently!).

The way that I've presented it to my dd is that it's great we have the

SC diet " in our pocket " for the future. I picture her eating mostly

SCD but without the diet-recommended fanaticism. Like how I heard

that Elaine Gotschall's daughter ate/eats 80% SCD and 20% SAD

(Standard American Diet). Maybe/probably there will be times in her

life where she'll have to go back to it (for women, notably hormonal

changes of adolescence and pregnancy/postpartum seem to induce bad

flares), but how great we know something other than meds and surgery.

Wishing everyone on this list good health,

Ellen

11 y/o dd scd since 5/06 for Crohn's

med-free since 9/08

[Guest guest]

Hi: I go to Mass General too. I guess you live nearby. The doctors there (in the

Crohn's and Colitis Center), non-pediatric, are NOT proponents of this diet.

They know I'm on it but basically tell me I can certainly try it (duh, I know

that), but I'm too severe for it to work.

I'm glad your dd is better. Would love to hear more and who his doctor is...

although I certainly do not qualify for a pediatric GI at age 39.

Thanks,

Debbie

[Guest guest]

Debbie I have done very well (UC)but my disease was not as severe as yours.

However I wanted to bring to your attention Raman Prasad's book 'Colitis and Me'

which you could order on Amazon I think. He had UC and his Dr described his

intestine as like bloody hamburger. He was facing removal of his large bowel and

also a serious liver issue. His book was incredibly inspiring to me and in fact

it was the thing that convinced me to give the SCD a try. Thank God i did. Best

wishes

Kylie

UC 6 yrs

SCD 4 yrs

>

> I'm wondering if anyone can share some success stories they've had with doing

the SCD while having a severe case of Crohn's or UC. I have Crohn's Colitis and

my next step a full colectomy. I didn't get much encouragement from my GI doctor

about this diet working in my particular situation. I'm wondering if this diet

has worked on people with Crohn's as bad as mine, or if it mostly works on

people who have mild to moderate disease.

>

> I am currently in a bad flare, am on 60mg of Prednisone (just upped it from

40), and just had a pretty awful doctor's appointment this morning laying out my

bleak options.

>

> I have been doing the diet for a week now --- just finished the intro stage

and was pretty much a mess the whole time (a lot of bm's, blood, etc.). I am

wholeheartedly into this diet 100%, I just need some encouragement that it could

work for someone like me.

>

> Thoughts? Thanks for anything you can share.

>

> Debbie

>