Venting

August 29, 2009

I'm so confused I don't even know where to start...

ugh. Ok... The diet seems to be going well. I know I feel

better and hasn't complained of pain in his bowels in well over a

month. I thought I should take him in for a check with his GI

doc. I was so SURE everything was going to be awesome aside from

that stupid second fistula. The doc requested blood work and I was

even happier, because in the blood work would be the proof that was

improving. I could wave it high in the air and show his GI that SCD

was saving us. What do they say about pride? *sigh*

Well, they say pride comes before the fall. 's C-Reactive

Proteins are at 5.2 (high), his sed rate is at 14 (borderline high), his

glucose is at 109 (high), his Total Protein is 8.3 (high), his Globulin

is 3.8 (high), his Bilirubin is 1.3 (high), his Alkaline Phosphates are

40 (low) and his iron is 25 (low). On top of that he'd lost 7

pounds in the 4 months since the last visit... and our lovely GI who has

been with since he was 12 is not excited about SCD at all. He

thinks that most people lose weight on it. So... He wants to start

back on meds. He's thinking Humira with 6mp. I reminded

him that the last time was on 6mp his liver failed... so that came

off of the table, but he's really pushing for the Humira, or as an

alternative, testing to see if he can go back on Remicade. He

also put him on an antibiotic for the fistulas. (UGH)

When was on Remicade he began having to do school through the

" home hospital " program. Three days at school meant a

month home sick and the teachers couldn't/wouldn't put together work for

him. On one occasion he was at school for a few days, then

didn't feel well. I kept him home and he progressively got

worse. I took him to Children's where we learned he had managed to

catch Mono and Pneumonia. It was in the hospital that his liver

failed. The teachers were going to give him " C's " for the

year... and I flipped out like only a mother on the edge can.

Granted, the Remicade stopped the 5 pounds a week weight loss, and

without that I wouldn't have with me. He spent many nights at

Children's with that tube feeding him just to keep him with us. He

was just starting to consider spending next year.. his Senior year, at

school with other kids. Humira would end that. Of course, at

the moment he weighs 136 pounds and is 6 feet tall... so much more weight

loss and we'll be back to the hospital anyway.

Then there's the option of the LDN which seems to be highly recommended

by many people on this board. If he absolutely has to be on drugs

to turn himself around, that would be my preference. I know,

without a shadow of a doubt, we would lose the GI we've come to adore if

we go that route. I could very likely get my GP to prescribe

it. He's always been very flexible and has cared for the family for

15 years now, so he knows I'm not a loon and I think things through.

What I've done so far is to send 's GI an email stating that we are

standing by the diet and would like to check back with him in a month for

another check. He's stated that he believes 's Crohn's is

focusing on his peri-rectal area and that he's very concerned, but that

he'll wait to set up the Humira and see us in a month. I don't know

if I'm doing the right thing. I don't feel like I can get to

eat enough. He just will not snack. He has developed a love

for fruit-yogurt smoothies, so I make his yogurt with 1/2 and 1/2 to get

as many calories into it as possible. I am trying to really push

the yogurt since he's on the antibiotics. I'm having the first

stomach pain since starting this diet... gads.. wonder if it's stress

related?

I did finally manage to make the enchiladas. I bought a crepe maker

and that made all the difference in the world for me. I think they

came out great. Sadly, had a few bites, and said he was

full. Today I had Dad throw steaks on the grill. The one

thing he'll eat anytime. He ate a nice big steak, but I can't buy

him steaks every day.

Ok. Vent complete. Thanks for reading.

Rhonda UC

Son, 16, CD

SCD 2+ months

August 29, 2009

Hi n!

I guess I'm afraid of not having this GI with us, especially since he's

been with us from the beginning and his conventional methods did stop the

downward spiral was in. I did join the LDN group at on time..

it seemed very argumentative (I probably hit it at the wrong time) and

this group is so great I just left and stuck it out here. I could

join again and figure more out. I did keep a link to the LDN study

and was actually going to pay for a membership so I could see the entire

study and print it for my doc.. but I can't find the link now. I

can search the archives for it.

Confrontation has always stressed me out, which has always caused bloody

D, so I'm not very good at it. Sometimes I need a little

push. I will find the link, send it to his GI doc and tell him we

want to try LDN. I need to stop guessing what he'll say and

actually find out before I make another move.

If I hit a brick wall with the GI doc, I have an appointment with our GP

this week for and I'll talk all of this over with him. If I

can get that study printed up, I'll see how he feels prescribing it for

him. I'll have to be able to hand him all of the dosing info

etc.

I know that the second to the last thing I want is on

another immuno-suppressant.

Thanks for your thoughts,

Rhonda UC

Son, 16, CD

SCD 2+ Months

In light of all

you’ve described, I do not understand why you won’t get on LDN, and

as soon as possible, the more so when the alternative is Humira.

I suggest you sign up for the yahoo LDN list and talk with other people

there who are on it, and some who have been on it a long time.

I’ve had Crohn’s for 30 years, have had two surgeries; had active Crohn’s

when I started LDN and the diet at the beginning of the year; and three

months later my blood work was almost entirely normal. I currently have

some minor periodic aching in my right side (that had previously

subsided). It may be something I’m eating that’s irritating my gut. The

diet has helped, but I wouldn’t be where I am on that alone. The LDN has

helped/is helping me tremendously, including – the best part – having

given me a great surge of energy (I previously had constant debilitating

fatigue) and also improving my allergies, asthma and arthritis.

I guess I don’t “get” your reluctance to use LDN. If your

gastroenterologist is so good, why isn’t he supporting you re: the diet.

And why won’t he prescribe LDN? He may be a nice person but he

sounds like the typical conventional, not very open-minded doctor who’s

used to doing things the way he’s been taught and won’t consider anything

else. It sounds to me like you’d be better off with your

open-minded GP.

n

August 29, 2009