Newbie introduction with questions

[Guest guest]

Hi everyone. I am the mother of a soon to be 19 year

old son who has UC. Please bear with me as I share my story…I promise

that future posts will not be this long!

He was diagnosed at around 5 years old and at

the time his symptoms were just loose stools/diarrhea that was very smelly. He

was put on sulfasalazine (sp?) which never really made any difference. We

stopped that treatment and then I guess he went into remission for the next 8

years because he was fine. During his teen years the issue returned and a

colonoscopy confirmed the original diagnosis. Asacol was prescribed and he did

that for a short time but hated the side effects. We stopped that and started

to pursue other alternative treatments. During his junior year of high school he

was doing fairly well eating a lot of anything continuously but not really

gaining weight. Then he played spring baseball and that started a slow decent

for him. We were trying GF, had avoided corn and some other things that our

chiropractor/nutrionist was advising but nothing was really helping. By

September of this past school year, his senior year, he was starting to really

struggle with being tired constantly. I took him to the medical doctor who

tested him for mono which was confirmed. He also was anemic and ended up

missing 7 weeks of school. Our family doctor sent us to the GI doc and another

colonoscopy showed the UC was moderate to severe and he weighed in at 109 lbs. At

this point I was ready to have take whatever drugs they could give him because

he looked so bad…especially in the hospital gown after the procedure; he

was so emaciated and boney. I was scared. So began the prednisone and

asacol which he took for several weeks. Suddenly he was gaining weight and

feeling robust. I think he put on close to 20 lbs over thanksgiving and my

heart was singing. Of course, it was all false weight and the 30 plus lbs. he

put on started to come off again after the prednisone. He was kept on the

Asacol but the doc also put him on a high dose of Imuran…125 mg. Though

he is not as bad as he was, these drugs still weren’t making the

difference that I was thinking they would make. At our last visit in early May,

the GI stated that he thought Wesley was on the path to Remicade. Well, I had

researched that already and knew that that was the absolutely last choose we

would make. However, his plan was to try and bump up his Imuran one last time

if the test that he ordered confirmed that Wesley could handle it. We left that

appointment waiting to hear back the results of the test and also waiting for the

scheduler to call for the next appointment in 4 weeks. We have yet to hear from

them and in the meantime through a odd yet wonderful “coincidences”

I stumbled across the scd. The word hope has never had so much meaning to us.

We did things the wrong way though…in our exuberance we slowly started

the diet BEFORE the book arrived at our door. We discovered some of our errors

and corrected them and I guess are still correcting them as we find them. My

son took himself off of his meds even though the book and so many sites say not

to. When he read that his meds have illegal substances he thought it would

deter the effectiveness of the diet. Is this correct? I must clarify here that

his UC has never been as bad as some of the horror stories we have read about.

The most he would have to go in a day would be 5 or 6 times and he rarely had

bloody stools. His biggest problem is in trying to gain weight. He has been on

the diet strictly now for about 2 weeks. We tried starting this right around graduation

time and there were all kinds of parties and eating opportunities. He broke and

down a couple of times but for the past two weeks has been very strict. About what

he eats. And I feel like I am living in the kitchen. Thankfully, we discovered

this at the end of the school year…I am a teacher and I don’t know

how I could have dealt with this change in cooking while working full time and

trying to feed the other 5 members in the famil

He refuses to weigh himself yet because he is

afraid to see that he has lost more though I think he is just holding at what

he has been which is positive in my mind. His stools are not as liquidy but

still not formed and he is going about three times/day. There was a day or two

where he went 12 hours between going which was a significant thing but that has

not occurred again. We are trying to figure out if there is something still

amiss with what he is eating. So, that is our story thus far…below I have

a few questions for anyone able to address them. Being able to talk to others

about this is HUGE for me…I think he signed up on this as well but I don’t

know how much he takes the time to get involved.

I have been

making yogurt and thought things were fine until this week and now I am

wondering if this might be what is hindering him. The first batch I made

was with regular whole milk from cows who are not fed hormones…not

raw milk but better than grocery store milk. I think it was during his

eathing of this batch that he had the 2 a day stool over 12 hours. Then I

made some with some Lactose free milk and I think he only had one of

those because we questioned whether it was legit because of the lack of

lactose…would that impact its potency? I could find nothing on

internet to answer this for us. The third batch I made was with goat’s

milk and just today I read that when cooking it, the temp can not go above

185 degrees and I know for sure this did. I think I killed off the good

guys when I did this, yes? Just last night I tested these last two yogurts

for live bacteria by putting them in a warm environment in a clean dish

covered with plastic wrap. I read that if in the morning the plastic is bulging

then fermentation is happening thus live cultures. Well, no bulging

plastic wrap was seen so I am guessing it is ineffective yogurt. Am I

correct on this?

If cows milk

accidentally comes to a boil does that ruin the yogurt?

I tested the

temp of the finished yogurt before taking it out of the machine and it was

between 115 and 120. Is this too hot?

Is there a

yogurt maker that is more reliable than others?

Should he even

be eating the yogurt yet? He has been very strict about the diet so given

that his symptoms have not been as severe as others we have read about and

that he has been so conscientious for the past two weeks, is that a long

enough time for the kill off…is it time to add the good bacteria

with the culture?

Has anybody here

tried the probiotic VSL#3? I have so many positive things about it and yet

it sounds like is is conflict with what Elaine G. says about the types of

bacteria which should be used to recolonize

How do you know

who to believe...I feel like I start down a path thinking this is the

answer, only to find a different voice which also makes sense but

conflicts with what I just read somewhere else?!

I signed up to a

part of this group and am receiving the emails but when I tried to respond

to one I was told I am not allowed to post to this group. What do I need

to do to correct this?

I am so sorry for such a long email…if anyone

has actually taken the time to read this and could take a little more to advise

I would be oh so grateful!

Blessings to you all…

Eileen

Eileen Cawood

email: parvus@...