DIS-Functional Wonder Peeps 7/20 & 7/24, 2008 PART II

[tiggerandpooh]

Hi Everybody,

Just stopping by to say have not posted in a while. We have been very busy with work and Tyler's baseball and end of school coming soon. I cant believe we are only 46 days from the cruise and P.J. dancing, we are so excited to get to see our old friends and meeting new ones and making Magical Memories to last a lifetime and watching the over and over on the BeanoC production DVD.

On another note, I know you all our great when it comes to Pixie Dust, I am calling in another Pixie Dust request. This time its for Linda, as you all know she has Crohn's disease and she has had a really bad flare up this time around, we have had so many tests done this time and the Doctor said from a colonoscopy and a test called a capsule endoscospy that there is no inflammation in the colon that would cause a flare up, so she is going for a test called an EUS(endoscopy with ultra sound), and they are giving her this test because about 3 or 4 years ago she had her Gallbladder remove and he thinks something in the bile duct might because this flare up. I hope that this test gives the answer, I am really concern because she has lost some weight and looks very worn out and just not healthy, it has really taken its toll on her and me. My mom who has been a nurse for 45 years, spoke to one of the best doctors in Westchester County, explain all the on going efforts to the doctor and he said it sound like she to the point of a very deadly but effective medicine called Remacaid, with one of the main side effects believe it or to be death. If anyone has anymore information on the drug or if someone you know has taken this medicine, my family and I would great appreciate it. As for right know all we can do is pray and get her healthy for this cruise, because i know that Linda and the kids are getting more excited day by day, especially Sean Patrick. As if my family need and more medical problems, not only Linda, but My father with his chemotherapy treatment. I apologize if I brought anyone down, but I needed to vent, and thought that this was the only place I could do it, amongst friends who I love and respect a lot.

Thank you in advance for your prayers and Pixie Dust

 

[tarzanman]

Sean,

You are certainly among friends. We will definitely keep Linda and your whole family in our thoughts and prayers.

 

[Anal Annie]

On another note, I know you all our great when it comes to Pixie Dust, I am calling in another Pixie Dust request. This time its for Linda, as you all know she has Crohn's disease and she has had a really bad flare up this time around, we have had so many tests done this time and the Doctor said from a colonoscopy and a test called a capsule endoscospy that there is no inflammation in the colon that would cause a flare up, so she is going for a test called an EUS(endoscopy with ultra sound), and they are giving her this test because about 3 or 4 years ago she had her Gallbladder remove and he thinks something in the bile duct might because this flare up. I hope that this test gives the answer, I am really concern because she has lost some weight and looks very worn out and just not healthy, it has really taken its toll on her and me. My mom who has been a nurse for 45 years, spoke to one of the best doctors in Westchester County, explain all the on going efforts to the doctor and he said it sound like she to the point of a very deadly but effective medicine called Remacaid, with one of the main side effects believe it or to be death. If anyone has anymore information on the drug or if someone you know has taken this medicine, my family and I would great appreciate it. As for right know all we can do is pray and get her healthy for this cruise, because i know that Linda and the kids are getting more excited day by day, especially Sean Patrick. As if my family need and more medical problems, not only Linda, but My father with his chemotherapy treatment. I apologize if I brought anyone down, but I needed to vent, and thought that this was the only place I could do it, amongst friends who I love and respect a lot.

So sorry to hear about Linda's flare up with her Chrohn's. My next door neighbor and one of her sisters both have it. They were able to do surgery on her sister and she is fine now I believe. But my neighbors problem is located in a part where surgery would leave her having to wear a bag. Something NOT desirable at age 40! She had a super bad flare up over this past winter and had all of these tests done too. She actually had let it go for months & months and also lost a lot of weight bcuz she basically stopped eating. She was down to like a teen size 0 or something. Anyway, she finally checked herself into Johns Hopkins in Baltimore back in January and was in there for about 2 weeks. She used the Remacaid, among other things. She had these infusion injection things several times as well where she would go & spend the day in there and they hooked her up for these infusions for hours at a time. Lots of steroids too. I don't know what all. LOTS of meds. BIG BIG pills...so many that she had to use like 3 of those little daily pill boxes for awhile. She was really bad off for quite awhile (because she ignored it & put off going into the hospital) but has been doing much better for about the past 3 months I think. After the Chrohn's went into remission and she started feeling better she went off the meds for a little while but just went back on some of the meds as a maintenance effort. I am not sure what she's on right now...I know she said a few days ago that they wanted her to take 3 of them 3 times a day but they were making her feel sick so she's only doing 2 x 3 for now. I can ask her for you what she's on now & what she thought about the Remacaid. I know they did it as a drastic measure. I think it weakens your immune system & you have to be really careful about being around a lot of germs & stuff. I think it's key to get treatment for the flare ups and not let them go on too long thinking that they will just improve on their own. We must get Linda feeling better B4 vacation!!!

I will ask her what her thoughts are on the Remacaid and what she's on now...

 

[RonnieJo66]

Sean & Linda: Prayers and pixie dust on the way my friends! My love and hugs to you both.

 

[DisneyDmbNut]

hugs to Sean and Linda!! Get better!!! WE MUST CRUISE!~!


um,,RJ..that was the picture yesterday!!!

 

[tiggerandpooh]

So sorry to hear about Linda's flare up with her Chrohn's. My next door neighbor and one of her sisters both have it. They were able to do surgery on her sister and she is fine now I believe. But my neighbors problem is located in a part where surgery would leave her having to wear a bag. Something NOT desirable at age 40! She had a super bad flare up over this past winter and had all of these tests done too. She actually had let it go for months & months and also lost a lot of weight bcuz she basically stopped eating. She was down to like a teen size 0 or something. Anyway, she finally checked herself into Johns Hopkins in Baltimore back in January and was in there for about 2 weeks. She used the Remacaid, among other things. She had these infusion injection things several times as well where she would go & spend the day in there and they hooked her up for these infusions for hours at a time. Lots of steroids too. I don't know what all. LOTS of meds. BIG BIG pills...so many that she had to use like 3 of those little daily pill boxes for awhile. She was really bad off for quite awhile (because she ignored it & put off going into the hospital) but has been doing much better for about the past 3 months I think. After the Chrohn's went into remission and she started feeling better she went off the meds for a little while but just went back on some of the meds as a maintenance effort. I am not sure what she's on right now...I know she said a few days ago that they wanted her to take 3 of them 3 times a day but they were making her feel sick so she's only doing 2 x 3 for now. I can ask her for you what she's on now & what she thought about the Remacaid. I know they did it as a drastic measure. I think it weakens your immune system & you have to be really careful about being around a lot of germs & stuff. I think it's key to get treatment for the flare ups and not let them go on too long thinking that they will just improve on their own. We must get Linda feeling better B4 vacation!!!

I will ask her what her thoughts are on the Remacaid and what she's on now...

Thanks Annie

We really appreciate it

 

[RonnieJo66]

um,,RJ..that was the picture yesterday!!!

oops!

here ya go Bets! go play.....

 

[DisneyDmbNut]

go to weather.com and look over in the bahamas..on their satellite view there is a really good shot of CC (Gorda Cay) I watched a storm blow over it yesterday!

 

[Soccermom-Cheri]

oops!

here ya go Bets! go play.....

rj, why you show us picture of man's bee-hind? is the front not so good?





Sean - answered your PM before I read your post. Prayers and hugs and lot's of PD to your family! We've had some interesting medical stuff going on and it's so frustrating to have pain and not be able to get a firm "this will fix it" answer. My step-dad is a doctor and I will ask him about the Remacaid. Feel free to come here anytime and vent.

 

[tinkryansmom]

T & P

Hugs and Pixie Dust to you all. Your family is in our prayers. Vent whenever necessary that's what we are here for!!

 

[Anal Annie]

Sean - I just talked to my neighbor...

First, she said you can email her if you'd like (PM me and I'll give you her email address if you want it). She said that she did not like the Remacaid - had a lot of bad side effects and didn't seem to help her. But supposedly she was like a worse case scenario or something - she was under the impression that most people respond quite well to it. I guess the Remacaid was the infusions she went for. Anyway, prior to that she was on a Chemo drug called 6mp. That also did not help her. When she went into Johns Hopkins for the 2 weeks she was on IV Steroids. She said THAT is what helped her the most. Now, she is on Colozal - and they hope that will keep her on the up & up this time, although it didn't before. Sounded like she was a fan of the IV Steroids, then the 6mp THEN the Remacaid, although she said the Remacaid is worth a shot for most cases. But she kept on saying that she is different than most cases for some reason and that she's not a typical case. I got the feeling that WHERE the Chrohn's is located has something to do with it too 'cuz she asked me if Linda's is in her small intestine or her large?!

Anyway, let me know if you & Linda would like to email her and I'll give you her email address.

 

[DisneyDmbNut]

i was scanning a picture of kate and couldn't resist posting...she was so cute!!

 

[RonnieJo66]

i was scanning a picture of kate and couldn't resist posting...she was so cute!!

I'd have to guess...about 10 yrs ago

 

[Anal Annie]

Very cute pic... We just had to send in a baby pic for a collage of all of the 5th graders....ahhh....such memories!

 

[Soccermom-Cheri]

Docs are starting to arrive for the late June Wonder cruises......

it's
getting
closer.

 

[RonnieJo66]

Docs are starting to arrive for the late June Wonder cruises......

it's
getting
closer.

 

[RonnieJo66]

How many days now Peeps?






Pretty soon we'll be waving bye....bye....bye!

 

[MMCD]

We are still alive.

Sean and Linda, I'm sorry for Linda's medical problem. My next rosary prayer will be for her. Have you tested her for Gluten allergy? Have you read "The Yeast Connection" by Dr. Crook? Have you gone to a hollistic doctor? I had IBS all my schooling and early adult life until I changed my diet. I am not allergic to gluten but I have taken better care of my diet. I don't take ulcer pills or antacids anymore. I learned about drinking aloe vero juice with apple juice and poof my IBS was practically gone.

Last year, my friend's husband was always sick. He was a vegetarian for 6 years but was still constantly sick. I never knew it because he never talked about it. He was scheduled to have surgery. Then I told him about gluten but he had just seen a doctor about it and that was the reason for his intestines ailment. So the surgery was cancelled.

I thought we were having such a rough time at home. We are still arguing about where DS17 should go to college. It's tearing us apart and ruining any family outings.

 

[DisneyDmbNut]

I'd have to guess...about 10 yrs ago

yep...it was may 1998..we went to a friends pool..i have another picture of her laying on her belly looking up..that is on the mantle in the living room

 

[Soccermom-Cheri]

NO! Please to be sending!



pretty please?