Major Bummer...(LONG)

September 27, 2008

Hi All... I just wanted to let you all know that our son, , is

in a very bad way right now. He was admitted to the hospital

Thursday because we discovered a giant (doctor's words) abscess in

his pelvis. It looks like it was caused by a fistula that we did not

know had. The docs put in a drain yesterday and a pic line. We

are hoping this will work, otherwise will have surgery. Also,

he is on major " gorilla " strength antibiotics (oh no...there goes all

our hard work on his good gut flora!). So far, though, he seems to

be doing OK. It is weird... had NO symptoms of this huge thing

up until MOnday of this week. He developed a swollen right

buttocks. We took him in, they did an ultrasound and CT...then they

saw this ugly thing. The docs said the pred is what " masked " his

symptoms. He has no fever, sickness, D, or anything. We have been

struggling with anemia, and this was probably a " sign " , but we

thought it was just his Crohn's. Also, he did have some minor pain

in his tail bone area, but he broke his tail bone in July and we

thought it was just recovery from that. It is just pretty scary how

this thing snuck up on us, and is now very serious. The docs are

suspicious the injury to his tail bone could have triggered the

fistula since it is in the same area. Additionally, the pred messed

with 's immune system, so he couldn't fight it off as well...and

it got big.

Anyway, I am just passing along this info to ask for prayers for

. We know, through the grace of God, can beat this! I also

wanted to share with you how incidious CD can be (I know a lot of you

already know this from your own expereinces...). Also, I have been

questioning this whole prednisone thing. has been on it for 9

months (10 mg/day). I keep telling myself if we had to do this ALL

over again, I think we would have opted to do SCD alone to treat his

CD. We saw great results with SCD initially, and I can't help but

wonder if he was not on immune suppressive drugs if this would have

happened...or if it did, we would have known about it much sooner. I

know pred has its place, but I am just feeling pretty frustrated with

it right now. Of course, they have upped his pred to 60 mg a day

while he is the hospital...I know it is probably helping, but I

wonder how much it is also hurting.

At this point, we are going day by day with . He will be on IV

antibiotics for quite sometime. We are also coming to terms with the

fact he will probably have a bowel resection when this is all over

(he has two strictures in his small intestine). This is whole other

deal we will have to address.

On an encouraging note, is baffling the docs with how well he

seems to be doing. We still have him on SCD, and I am cooking and

bringing him his own food. Since he has pic, we have been

requesting all meds be through his IV...which is great! Also, they

are putting together a TPN for him and will start that tonight. He

had a blood transfusion last night for his severe anemia, and that is

helping. I do believe when we get this infection under control,

will feel so, so much better. That encourages us!! I do believe the

fact has been on SCD for several months, his body will be able

to fight this better in spite of immune suppressive drugs. I will be

sure and keep you all posted on his progress.

I just wanted to say, also, that I appreciate everything I have

learned from all of you! I have not been very active in getting back

to people lately regarding answers to my questions (ie feeding tubes,

ostrich meat), but we have been a bit pre-occupied with things. DO

know, though, that I check in all the time and thank you for helping

me out! You guys are great, and happy anniversary!!

Thanks for listening (reading..),

DS 11 yo, CD Jan 08, SCD Jan 08, 10 mg pred (plus, lots of other meds

right now!)

September 27, 2008

oh the poor thing!! so sorry to hear way to go sticking with scd even

thru this - i will add him to my email prayer request and a lot of

people will be praying

hang in

eileen

>

> Hi All... I just wanted to let you all know that our son, , is

> in a very bad way right now. He was admitted to the hospital

> Thursday because we discovered a giant (doctor's words) abscess in

> his pelvis. It looks like it was caused by a fistula that we did

not

> know had. The docs put in a drain yesterday and a pic line.

We

> are hoping this will work, otherwise will have surgery. Also,

> he is on major " gorilla " strength antibiotics (oh no...there goes

all

> our hard work on his good gut flora!). So far, though, he seems to

> be doing OK. It is weird... had NO symptoms of this huge thing

> up until MOnday of this week. He developed a swollen right

> buttocks. We took him in, they did an ultrasound and CT...then

they

> saw this ugly thing. The docs said the pred is what " masked " his

> symptoms. He has no fever, sickness, D, or anything. We have been

> struggling with anemia, and this was probably a " sign " , but we

> thought it was just his Crohn's. Also, he did have some minor pain

> in his tail bone area, but he broke his tail bone in July and we

> thought it was just recovery from that. It is just pretty scary

how

> this thing snuck up on us, and is now very serious. The docs are

> suspicious the injury to his tail bone could have triggered the

> fistula since it is in the same area. Additionally, the pred

messed

> with 's immune system, so he couldn't fight it off as

well...and

> it got big.

>

> Anyway, I am just passing along this info to ask for prayers for

> . We know, through the grace of God, can beat this! I

also

> wanted to share with you how incidious CD can be (I know a lot of

you

> already know this from your own expereinces...). Also, I have been

> questioning this whole prednisone thing. has been on it for 9

> months (10 mg/day). I keep telling myself if we had to do this ALL

> over again, I think we would have opted to do SCD alone to treat

his

> CD. We saw great results with SCD initially, and I can't help but

> wonder if he was not on immune suppressive drugs if this would have

> happened...or if it did, we would have known about it much sooner.

I

> know pred has its place, but I am just feeling pretty frustrated

with

> it right now. Of course, they have upped his pred to 60 mg a day

> while he is the hospital...I know it is probably helping, but I

> wonder how much it is also hurting.

>

> At this point, we are going day by day with . He will be on IV

> antibiotics for quite sometime. We are also coming to terms with

the

> fact he will probably have a bowel resection when this is all over

> (he has two strictures in his small intestine). This is whole

other

> deal we will have to address.

>

> On an encouraging note, is baffling the docs with how well he

> seems to be doing. We still have him on SCD, and I am cooking and

> bringing him his own food. Since he has pic, we have been

> requesting all meds be through his IV...which is great! Also, they

> are putting together a TPN for him and will start that tonight. He

> had a blood transfusion last night for his severe anemia, and that

is

> helping. I do believe when we get this infection under control,

> will feel so, so much better. That encourages us!! I do believe

the

> fact has been on SCD for several months, his body will be able

> to fight this better in spite of immune suppressive drugs. I will

be

> sure and keep you all posted on his progress.

>

> I just wanted to say, also, that I appreciate everything I have

> learned from all of you! I have not been very active in getting

back

> to people lately regarding answers to my questions (ie feeding

tubes,

> ostrich meat), but we have been a bit pre-occupied with things. DO

> know, though, that I check in all the time and thank you for

helping

> me out! You guys are great, and happy anniversary!!

>

> Thanks for listening (reading..),

>

> DS 11 yo, CD Jan 08, SCD Jan 08, 10 mg pred (plus, lots of other

meds

> right now!)

>

September 27, 2008

Hi and ,

My thoughts and prayers are with you!

CD is so insidious and just a wretched horrible disease.

I am so happy with your commitment to the diet- BRAVO it's inspiring

for me and my own challenges.

Wishing a speedy recovery and much much good health!

Hugs,

Jodi

SCD 12 months

Crohn's/Colitis

September 28, 2008

,

God Bless you and your young son. Please try to take extra good care

of you-so you can be at your best when this is over. I have faith that

the great care you have afforded your child will bring him through

this fine. A few of my customers have had resections after a time on

the SCD and seemed to recover very quickly. The Doctors here are like

his,theywonder what happened when patients recover so well.Check out

this web site, for some positive reenforcement, and hope that your

child will have a childhood in the future. My prayers are with your

family and .

http://www.holeinthewallcamps.org/

September 28, 2008

My heart goes out to both of you. Wishing him the easiest possible healing from this....

Ellen

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

Thank G-d, now med-free

September 28, 2008

At 02:28 PM 9/27/2008, you wrote:

Thanks for listening

(reading..),

,

The lists are for getting and giving -- you get help when you need it and

give help whenever you can.

I'm dreadfully sorry that is having to go through this, but one of

the things you have already noticed is that the medical personnel are

amazed by how well he is doing, considering.

Good nutrition will do that for you -- you've heard my report at how

amazed my surgeons were at my healing abilities!

I know you are saddened by the thought that may have to have a

resection, but Elaine told us many times about people who had them,

staying on SCD, and then went on to do extremely well. SCD can reduce

inflammation and prevent scarring, but good as it is, it cannot repair

extant scarring or strictures. What he does now with his diet can help

prevent further issues of this type.

Even when I'm at my most frustrated with modern western medicine, I

remember that what it handles the best is emergency medicine. 's

situation at the point is such an emergency. But between your cooking and

his stubbornness, he's got the basis he needs to pull through this crisis

and set out again on his healing journey.

Pink Lights and prayers for

you and him. Three steps forward, and two steps back, three steps

forward, and two steps back... and though it's frustrating, you're

farther along than if you'd stood still.

—

Marilyn

New Orleans, Louisiana, USA

Undiagnosed IBS since 1976, SCD since 2001

Darn Good SCD Cook

No Human Children

Shadow & Sunny Longhair Dachshund

October 1, 2008

Hi ,

I'm so sorry about your son. I can't even imagine how difficult this must be for you. This is just something no child should ever have to go through.

had a fistula when we first started the diet. It was a different type than your son's. It went from his intestine to his bladder, which according to his doctor, is one of the toughest types to heal without surgery. The doctor started him on Remicade and he had 2 infusions (this was pre-SCD). The infusions did not close the fistula and he had a really bad reaction almost immediately when they attempted to give him his 3rd infusion so he ended up not getting it. While his doctor was deciding what to do next, we started the diet. It took 6-8 months but the fistula healed. The only meds he was on were Asacol and Flagyl (his GI's usual CD cocktail). I credit the SCD with healing the fistula and giving him his life back. Hang in there and keep us posted.Wishing you and your son the best,Kim H.husband, , CD 1999SCD 2002

Major Bummer...(LONG)

Hi All... I just wanted to let you all know that our son, , is in a very bad way right now. He was admitted to the hospital Thursday because we discovered a giant (doctor's words) abscess in his pelvis. It looks like it was caused by a fistula that we did not know had. The docs put in a drain yesterday and a pic line. We are hoping this will work, otherwise will have surgery. Also, he is on major "gorilla" strength antibiotics (oh no...there goes all our hard work on his good gut flora!). So far, though, he seems to be doing OK. It is weird... had NO symptoms of this huge thing up until MOnday of this week. He developed a swollen right buttocks. We took him in, they did an ultrasound and CT...then they saw this ugly thing. The docs said the pred is what "masked" his symptoms. He has no fever, sickness, D, or anything. We have been struggling with anemia, and this was probably a

"sign", but we thought it was just his Crohn's. Also, he did have some minor pain in his tail bone area, but he broke his tail bone in July and we thought it was just recovery from that. It is just pretty scary how this thing snuck up on us, and is now very serious. The docs are suspicious the injury to his tail bone could have triggered the fistula since it is in the same area. Additionally, the pred messed with 's immune system, so he couldn't fight it off as well...and it got big.Anyway, I am just passing along this info to ask for prayers for . We know, through the grace of God, can beat this! I also wanted to share with you how incidious CD can be (I know a lot of you already know this from your own expereinces. ..). Also, I have been questioning this whole prednisone thing. has been on it for 9 months (10 mg/day). I keep telling myself if we had to do this ALL over

again, I think we would have opted to do SCD alone to treat his CD. We saw great results with SCD initially, and I can't help but wonder if he was not on immune suppressive drugs if this would have happened...or if it did, we would have known about it much sooner. I know pred has its place, but I am just feeling pretty frustrated with it right now. Of course, they have upped his pred to 60 mg a day while he is the hospital...I know it is probably helping, but I wonder how much it is also hurting. At this point, we are going day by day with . He will be on IV antibiotics for quite sometime. We are also coming to terms with the fact he will probably have a bowel resection when this is all over (he has two strictures in his small intestine). This is whole other deal we will have to address.On an encouraging note, is baffling the docs with how well he seems to be doing. We still have

him on SCD, and I am cooking and bringing him his own food. Since he has pic, we have been requesting all meds be through his IV...which is great! Also, they are putting together a TPN for him and will start that tonight. He had a blood transfusion last night for his severe anemia, and that is helping. I do believe when we get this infection under control, will feel so, so much better. That encourages us!! I do believe the fact has been on SCD for several months, his body will be able to fight this better in spite of immune suppressive drugs. I will be sure and keep you all posted on his progress.I just wanted to say, also, that I appreciate everything I have learned from all of you! I have not been very active in getting back to people lately regarding answers to my questions (ie feeding tubes, ostrich meat), but we have been a bit pre-occupied with things. DO know, though, that I

check in all the time and thank you for helping me out! You guys are great, and happy anniversary! ! Thanks for listening (reading..),DS 11 yo, CD Jan 08, SCD Jan 08, 10 mg pred (plus, lots of other meds right now!)

October 2, 2008

,

I'm so sorry to hear about your son. Good luck with everything. I

hope he pulls through OK.

Adam

-----

Original Message ----

To: BTVC-SCD

Sent: Saturday, September 27, 2008 2:28:10 PM

Subject: Major Bummer...(LONG)