It's been awhile since I posted

[Guest guest]

It's been awhile since I posted and it seems like everyone has had hard

times. Marilyn, I'm so sorry for your loss... my past month, no matter

how trying, can't compare to what you're going through.

Six weeks ago 's GI was still pushing Humira and I had asked him to

look into LDN. He said he'd look into LDN, but wanted to start on an

antibiotic treatment for his fistulas which were draining quite a

bit. was place in the hospital to get a picc line and begin 2 iv

antibiotics. One was Zosyn, and the other one slips my mind at the

moment... I'm pretty tired. Well his kidneys couldn't take both

antibiotics and his creatine levels skyrocketed, so it took a week to get

antibiotic levels figured out with his kidneys stable. We went home the

day after he turned 17, picc line in and a fanny pack with a programmed

pump in it. I switched his IV bag daily and at the end of week one things

looked great. The drainage was nearly stopped and he felt good. Around

day 10, a Friday, started complaining of pain near the fistulas. I

looked and although a tad red, the area didn't look swollen. Saturday he

told me that it still hurt and by Sunday he had trouble walking. I just

knew it was an abscess. Monday morning I called and left a message for his

GI doc. By 2pm, after getting no answer I called again... his office

hadn't checked messages yet!!! The doc called me back in under 30 minutes

and advised us to go to the ER.

In the ER they found he'd got an abscess that had to be drained right

away. The lidocaine shots hurt so bad he nearly broke my hand. The

incision and drainage hurt even more. Apparently e coli bacteria change

the pH of lidocaine and make it ineffective. was absolutely

STOIC. I was reeling from what I could see happening to him and was

keeping myself from passing out through force of will and all I was doing

was getting my hand crushed and offering verbal support. It was awful. He

was admitted again and cultures were taken of the puss and of his

blood. Because the abscesses occurred while he was on IV antibiotics that

raised some concern.

The next day we learned that 's white blood count was extremely low

and while we waited for culture results he was kept on Norco and morphine

along with the Zosyn. was getting fever spikes of 102 and sweating

pools into his sheets. On day 2 they had him do a colonoscopy prep, thank

goodness for the pain meds! On the 3rd day his colonoscopy was performed,

we learned that his white blood count was continuing to drop, that the only

culture found was e coli and one bit of good news. 's colonoscopy

showed remarkable improvement after only 4 months on the SCD. Still, his

GI doctor told me he wanted to start on Humira before we went

home. It was day 4 when the Infectious Disease specialist mentioned that

a rare side effect of the antibiotic was fever spikes and triggering the

bone marrow to stop creating white blood cells. So we switched to Leviquin

and flagyl and was given a shot to trigger his bone marrow to begin

producing white blood cells. By the time this all starts taking effect the

abscess is getting larger again. A week after the first IND, surgery is

scheduled to open up the abscess enough to allow adequate drainage and

explore the fistulas/abscesses to see if they have the same root

gland. Sure enough, they all come from the same gland, so the colon-rectal

surgeon inserted a drain tube. Hopefully the drainage will go one

direction and leave the others to heal. The surgeon also reported 's

colon looking very clean aside from the peri-rectal area, however he also

saw a deep fissure that was also causing pain and prescribed a

compounded cream that made a real difference in 's pain. The

Infectious Disease specialist told me that he recommended Humira be set

aside until was off of antibiotics and infection free for at least a

month. That gave me time to have my husband look over my LDN and Humira

research. We agreed that the diet has helped make remarkable

progress and Humira is for when nothing else works... we both agreed we

wanted to go toward LDN but 's GI doctor is not on the same page.

Some of our nurses were spectacular, some were far from it. I stayed with

the first 3 days, then only left well after dark and was back before

sunrise for the remainder of his 10 day stay. One day we got a gift... the

on-call pediatrician was Dr. Mike

Cantwell. http://www.cpmc.org/services/ihh/experts/michaelcantwell.html He

knew about the diet and believes it works for some people. He is

knowledgeable about and prescribes LDN. He was intrigued by and

wants him as a patient, but he has a 2 year waiting list. After leaving

's room he came back 10 minutes later with his card and requested we

contact his office and get seen by an associate so he could follow

. He spent over an hour in the room talking to us about supplements,

diet, background info... and before he left he called in a prescription to

a compounding pharmacy for LDN for !! I think we are firing the GI

has had since he was 12. I am also making an appointment with the NP

at Dr. Cantwell's office. I'm going to get started on LDN too!

On day 10 's pain was manageable with Norco, his white blood count was

back to normal, the antibiotics were working and I'd managed to let the far

from capable nurses know what I thought of them. Although I try to be

patient and kind I will not tolerate nurses second guessing if needed

pain meds or not while he shakes on the bed. I am quite the Mama Bear and

won't apologize for taking 's side every time. However, we were

discharged and happily drove home where I slept nearly 10 hours straight!

Of course, food in the fridge is moldy and there is nothing in the freezer

because I hadn't planned on a second 10 day hospital stay. From now on

there will ALWAYS be meals frozen. I've been shopping and cooking

non-stop. Today was beef stew, tomato sauce, and a mushroom-chicken in red

wine that was yummy. Tomorrow the tomato sauce will be put to use in a

chicken nugget casserole and a lasagna. Then it will be time to

bake! BTW, in between hospital visits I did create a very yummy

muffin. Carrot, coconut, raisins, yogurt... delish. When I get a chance

to sit tomorrow I'll post it. Right now, it's way past time for me to be

sleeping. I just wanted to let you guys know what's up. I've tried to go

through the posts but missed many...

Bless you all. Feel free to send me any info on LDN to my email.

Rhonda UC, kidney disease

*17*!! CD

SCD 4+ months

[Guest guest]

Woah. No wonder it's been a while since you've posted! That sounds

like terrible 10 days, or however many it turned out to be! I'm so

happy for you that you found a new doctor,and finally got LDN! Sounds

like a pretty good 17th birthday present =)

Peace =)

Alyssa 15 yo

UC April 2008, dx Sept 2008

SCD June 2009 (restarted)

No meds!

[Guest guest]

Thank you Rhonda for letting us know what is going on with

. What a hellacious experience. It’s one thing to be in pain

ourselves, but crushing to see our loved ones in pain and misery. Thankfully

you found a doc who is knowledgeable and can help (they are rare). Don’t

forget the probiotics after all the antibiotics had to take. Happy

Birthday to you ! You are an awesome mom Rhonda.

Carol

CD 21 yrs SCD 5 yrs

From:

BTVC-SCD [mailto:BTVC-SCD ] On Behalf Of Rhonda

Roman

In the ER they found he'd got an abscess that had to be drained right

away. The lidocaine shots hurt so bad he nearly broke my hand.

[Guest guest]

At 01:55 AM 10/31/2009, you wrote:

It's been awhile since I posted

and it seems like everyone has had hard

times. Marilyn, I'm so sorry for your loss... my past month, no matter

how trying, can't compare to what you're going through.

Rhonda,

It looks like you've had a pretty trying month no matter WHAT one

compares it to. Like I said, Mom is no longer in pain, no longer half

blind and deaf. She's free. We're the ones who have to grieve for her

absence.

You might do a search for my Twenty Minute Meals thread to help you stay

sane while you get your refrigerator back in shape.

I am very glad for you that you had that luck with the doctor for LDN.

And I'll be sending pink lights to . He's a brave 'un!

—

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]

It sounds like a great idea that you are firing your old doctor.Sounds like he needs to remember "first do no harm" andthat he was just proceeding with a set agenda with as opposed to looking at his particular sensitivities. "My way or the highway," as a medical practice, etc. Hopethis new doctor and his colleague are really helpful. MaraThank you Rhonda for letting us know what is going on with . What a hellacious experience. It’s one thing to be in pain ourselves, but crushing to see our loved ones in pain and misery. Thankfully you found a doc who is knowledgeable and can help (they are rare). Don’t forget the probiotics after all the antibiotics had to take. Happy Birthday to you ! You are an awesome mom Rhonda.CarolCD 21 yrs SCD 5 yrs From: BTVC-SCD [mailto:BTVC-SCD ] On Behalf Of Rhonda RomanIn the ER they found he'd got an abscess that had to be drained right away. The lidocaine shots hurt so bad he nearly broke my hand.

[Guest guest]

Wow, so sorry that (and you) have had to go through all of that. I am

glad that things are looking up though. I hope that the new doctor will be a

big help. And I hope that 's 18th birthday is spent in good health!

Please keep us updated on how the LDN goes with both of you too.

Liz

[Guest guest]

wow - sounds like a horrible time! So glad you're home and can breathe again. You are a great mom!

I totally can relate to the horrible nurses, btw! When DH was in the hospital years back with pancreatitis (that just wasn't going away after 3 weeks), they actually accused him of being a drug addict because he kept asking for pain killers! The poor guy was in SOOOO much pain. It made ME cry just watching him. Very upsetting - you'd think people in the health care profession would be a little more sympathetic.

To: btVC-SCD Sent: Fri, October 30, 2009 11:55:15 PMSubject: It's been awhile since I posted

It's been awhile since I posted and it seems like everyone has had hard times. Marilyn, I'm so sorry for your loss... my past month, no matter how trying, can't compare to what you're going through.Six weeks ago 's GI was still pushing Humira and I had asked him to look into LDN. He said he'd look into LDN, but wanted to start on an antibiotic treatment for his fistulas which were draining quite a bit. was place in the hospital to get a picc line and begin 2 iv antibiotics. One was Zosyn, and the other one slips my mind at the moment... I'm pretty tired. Well his kidneys couldn't take both antibiotics and his creatine levels skyrocketed, so it took a week to get antibiotic levels figured out with his kidneys stable. We went home the day after he turned 17, picc line in and a fanny pack with a programmed pump in it. I switched his IV bag daily and at the end of week one things

looked great. The drainage was nearly stopped and he felt good. Around day 10, a Friday, started complaining of pain near the fistulas. I looked and although a tad red, the area didn't look swollen. Saturday he told me that it still hurt and by Sunday he had trouble walking. I just knew it was an abscess. Monday morning I called and left a message for his GI doc. By 2pm, after getting no answer I called again... his office hadn't checked messages yet!!! The doc called me back in under 30 minutes and advised us to go to the ER.In the ER they found he'd got an abscess that had to be drained right away. The lidocaine shots hurt so bad he nearly broke my hand. The incision and drainage hurt even more. Apparently e coli bacteria change the pH of lidocaine and make it ineffective. was absolutely STOIC. I was reeling from what I could see happening to him and was keeping myself from

passing out through force of will and all I was doing was getting my hand crushed and offering verbal support. It was awful. He was admitted again and cultures were taken of the puss and of his blood. Because the abscesses occurred while he was on IV antibiotics that raised some concern.The next day we learned that 's white blood count was extremely low and while we waited for culture results he was kept on Norco and morphine along with the Zosyn. was getting fever spikes of 102 and sweating pools into his sheets. On day 2 they had him do a colonoscopy prep, thank goodness for the pain meds! On the 3rd day his colonoscopy was performed, we learned that his white blood count was continuing to drop, that the only culture found was e coli and one bit of good news. 's colonoscopy showed remarkable improvement after only 4 months on the SCD. Still, his GI doctor told me he wanted to

start on Humira before we went home. It was day 4 when the Infectious Disease specialist mentioned that a rare side effect of the antibiotic was fever spikes and triggering the bone marrow to stop creating white blood cells. So we switched to Leviquin and flagyl and was given a shot to trigger his bone marrow to begin producing white blood cells. By the time this all starts taking effect the abscess is getting larger again. A week after the first IND, surgery is scheduled to open up the abscess enough to allow adequate drainage and explore the fistulas/abscesses to see if they have the same root gland. Sure enough, they all come from the same gland, so the colon-rectal surgeon inserted a drain tube. Hopefully the drainage will go one direction and leave the others to heal. The surgeon also reported 's colon looking very clean aside from the peri-rectal area, however he also saw a deep

fissure that was also causing pain and prescribed a compounded cream that made a real difference in 's pain. The Infectious Disease specialist told me that he recommended Humira be set aside until was off of antibiotics and infection free for at least a month. That gave me time to have my husband look over my LDN and Humira research. We agreed that the diet has helped make remarkable progress and Humira is for when nothing else works... we both agreed we wanted to go toward LDN but 's GI doctor is not on the same page.Some of our nurses were spectacular, some were far from it. I stayed with the first 3 days, then only left well after dark and was back before sunrise for the remainder of his 10 day stay. One day we got a gift... the on-call pediatrician was Dr. Mike Cantwell. http://www.cpmc. org/services/ ihh/experts/ michaelcantwell. html He knew about the diet and believes it works for some people. He is knowledgeable about and prescribes LDN. He was intrigued by and wants him as a patient, but he has a 2 year waiting list. After leaving 's room he came back 10 minutes later with his card and requested we contact his office and get seen by an associate so he could follow . He spent over an hour in the room talking to us about supplements, diet, background info... and before he left he called in a prescription to a compounding pharmacy for LDN for !! I think we are firing the GI has had since he was 12. I am also making an appointment with the NP at Dr. Cantwell's office. I'm going to get started on LDN too!On day 10 's pain was manageable with Norco, his white blood count was back to normal, the antibiotics were working

and I'd managed to let the far from capable nurses know what I thought of them. Although I try to be patient and kind I will not tolerate nurses second guessing if needed pain meds or not while he shakes on the bed. I am quite the Mama Bear and won't apologize for taking 's side every time. However, we were discharged and happily drove home where I slept nearly 10 hours straight!Of course, food in the fridge is moldy and there is nothing in the freezer because I hadn't planned on a second 10 day hospital stay. From now on there will ALWAYS be meals frozen. I've been shopping and cooking non-stop. Today was beef stew, tomato sauce, and a mushroom-chicken in red wine that was yummy. Tomorrow the tomato sauce will be put to use in a chicken nugget casserole and a lasagna. Then it will be time to bake! BTW, in between hospital visits I did create a very yummy muffin. Carrot, coconut,

raisins, yogurt... delish. When I get a chance to sit tomorrow I'll post it. Right now, it's way past time for me to be sleeping. I just wanted to let you guys know what's up. I've tried to go through the posts but missed many...Bless you all. Feel free to send me any info on LDN to my email.Rhonda UC, kidney disease *17*!! CDSCD 4+ months

[Guest guest]

Rhonda- what a horrible ordeal for you and your son. I hope all is better now.

PJ

>

> wow - sounds like a horrible time! So glad you're home and can breathe again.

You are a great mom!

>

> I totally can relate to the horrible nurses, btw! When DH was in the hospital

years back with pancreatitis (that just wasn't going away after 3 weeks), they

actually accused him of being a drug addict because he kept asking for pain

killers! The poor guy was in SOOOO much pain. It made ME cry just watching him.

Very upsetting - you'd think people in the health care profession would be a

little more sympathetic.

>

>

>

>

> ________________________________

> From: Rhonda Roman

> To: btVC-SCD

> Sent: Fri, October 30, 2009 11:55:15 PM

> Subject: It's been awhile since I posted

>

>  

> It's been awhile since I posted and it seems like everyone has had hard

> times. Marilyn, I'm so sorry for your loss... my past month, no matter

> how trying, can't compare to what you're going through.

>

> Six weeks ago 's GI was still pushing Humira and I had asked him to

> look into LDN. He said he'd look into LDN, but wanted to start on an

> antibiotic treatment for his fistulas which were draining quite a

> bit. was place in the hospital to get a picc line and begin 2 iv

> antibiotics. One was Zosyn, and the other one slips my mind at the

> moment... I'm pretty tired. Well his kidneys couldn't take both

> antibiotics and his creatine levels skyrocketed, so it took a week to get

> antibiotic levels figured out with his kidneys stable. We went home the

> day after he turned 17, picc line in and a fanny pack with a programmed

> pump in it. I switched his IV bag daily and at the end of week one things

> looked great. The drainage was nearly stopped and he felt good. Around

> day 10, a Friday, started complaining of pain near the fistulas. I

> looked and although a tad red, the area didn't look swollen. Saturday he

> told me that it still hurt and by Sunday he had trouble walking. I just

> knew it was an abscess. Monday morning I called and left a message for his

> GI doc. By 2pm, after getting no answer I called again... his office

> hadn't checked messages yet!!! The doc called me back in under 30 minutes

> and advised us to go to the ER.

>

> In the ER they found he'd got an abscess that had to be drained right

> away. The lidocaine shots hurt so bad he nearly broke my hand. The

> incision and drainage hurt even more. Apparently e coli bacteria change

> the pH of lidocaine and make it ineffective. was absolutely

> STOIC. I was reeling from what I could see happening to him and was

> keeping myself from passing out through force of will and all I was doing

> was getting my hand crushed and offering verbal support. It was awful. He

> was admitted again and cultures were taken of the puss and of his

> blood. Because the abscesses occurred while he was on IV antibiotics that

> raised some concern.

>

> The next day we learned that 's white blood count was extremely low

> and while we waited for culture results he was kept on Norco and morphine

> along with the Zosyn. was getting fever spikes of 102 and sweating

> pools into his sheets. On day 2 they had him do a colonoscopy prep, thank

> goodness for the pain meds! On the 3rd day his colonoscopy was performed,

> we learned that his white blood count was continuing to drop, that the only

> culture found was e coli and one bit of good news. 's colonoscopy

> showed remarkable improvement after only 4 months on the SCD. Still, his

> GI doctor told me he wanted to start on Humira before we went

> home. It was day 4 when the Infectious Disease specialist mentioned that

> a rare side effect of the antibiotic was fever spikes and triggering the

> bone marrow to stop creating white blood cells. So we switched to Leviquin

> and flagyl and was given a shot to trigger his bone marrow to begin

> producing white blood cells. By the time this all starts taking effect the

> abscess is getting larger again. A week after the first IND, surgery is

> scheduled to open up the abscess enough to allow adequate drainage and

> explore the fistulas/abscesses to see if they have the same root

> gland. Sure enough, they all come from the same gland, so the colon-rectal

> surgeon inserted a drain tube. Hopefully the drainage will go one

> direction and leave the others to heal. The surgeon also reported 's

> colon looking very clean aside from the peri-rectal area, however he also

> saw a deep fissure that was also causing pain and prescribed a

> compounded cream that made a real difference in 's pain. The

> Infectious Disease specialist told me that he recommended Humira be set

> aside until was off of antibiotics and infection free for at least a

> month. That gave me time to have my husband look over my LDN and Humira

> research. We agreed that the diet has helped make remarkable

> progress and Humira is for when nothing else works... we both agreed we

> wanted to go toward LDN but 's GI doctor is not on the same page.

>

> Some of our nurses were spectacular, some were far from it. I stayed with

> the first 3 days, then only left well after dark and was back before

> sunrise for the remainder of his 10 day stay. One day we got a gift... the

> on-call pediatrician was Dr. Mike

> Cantwell. http://www.cpmc. org/services/ ihh/experts/ michaelcantwell. html He

> knew about the diet and believes it works for some people. He is

> knowledgeable about and prescribes LDN. He was intrigued by and

> wants him as a patient, but he has a 2 year waiting list. After leaving

> 's room he came back 10 minutes later with his card and requested we

> contact his office and get seen by an associate so he could follow

> . He spent over an hour in the room talking to us about supplements,

> diet, background info... and before he left he called in a prescription to

> a compounding pharmacy for LDN for !! I think we are firing the GI

> has had since he was 12. I am also making an appointment with the NP

> at Dr. Cantwell's office. I'm going to get started on LDN too!

>

> On day 10 's pain was manageable with Norco, his white blood count was

> back to normal, the antibiotics were working and I'd managed to let the far

> from capable nurses know what I thought of them. Although I try to be

> patient and kind I will not tolerate nurses second guessing if needed

> pain meds or not while he shakes on the bed. I am quite the Mama Bear and

> won't apologize for taking 's side every time. However, we were

> discharged and happily drove home where I slept nearly 10 hours straight!

>

> Of course, food in the fridge is moldy and there is nothing in the freezer

> because I hadn't planned on a second 10 day hospital stay. From now on

> there will ALWAYS be meals frozen. I've been shopping and cooking

> non-stop. Today was beef stew, tomato sauce, and a mushroom-chicken in red

> wine that was yummy. Tomorrow the tomato sauce will be put to use in a

> chicken nugget casserole and a lasagna. Then it will be time to

> bake! BTW, in between hospital visits I did create a very yummy

> muffin. Carrot, coconut, raisins, yogurt... delish. When I get a chance

> to sit tomorrow I'll post it. Right now, it's way past time for me to be

> sleeping. I just wanted to let you guys know what's up. I've tried to go

> through the posts but missed many...

>

> Bless you all. Feel free to send me any info on LDN to my email.

>

> Rhonda UC, kidney disease

> *17*!! CD

> SCD 4+ months

>