New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

haileys letter
Regular Member


Date Joined Nov 2006
Total Posts : 296
   Posted 1/20/2009 10:22 PM (GMT -6)   
 
 
 I thought of all of you tonight as I tucked my 8 1/2year old into bed tonight. She was sick for six years. The doctors wanted to take her colon out. We as parents looked for every answer we could for our child.
 
It has been since October 2006 that she has  been well . She now lives life like a normal little girl. She eats a healthy diet and is not restricted on her food. She has been well for 2 1/2years.
 
If you ask my opinion on what happens in this disease. I will tell you, you can get better. It maybe ,because the bacteria in your colon is unbalanced, it maybe  too many antibiotics, it may be a yeast overgrowth  or it maybe stress  in your life.
 
That is what is so confusing about the colon.
 
 
I will tell you ....That my little girl suffered for six years of Ulcerative Colitis  that she could not control.  God , bless her little heart.
 
 
Please take the time to read her story , if it helps one person, my time was well worth it.
 
 
 


 http://www.healingwell.com/community/default.aspx?f=38&m=643365&p=1<!-- Edit -->
Dave & Kelly
Daughter 8
Diagnosed at 15months with UC (pancolitis) then  Selective IgM defiency
Took many medications, no relief,GI wanted to start her on Imuran.
Took her to a natural doctor. He did a detox on her body.
Going to the restroom 15 times a day, developed pneumonia,recieved shots of Rocephin (wide sprectrum antibioitic) within24 hours of Rocephin bowels were formed.Since October 26 2006 she has been well without any medications. She takes Forvia multi vitamin ,Natures Way Primadophilus Reuteri, Viactiv calcium chew daily.
 
 
 
 
 
 
 
 
 

Post Edited (haileys letter) : 1/20/2009 9:59:17 PM (GMT-7)


love4cats
Regular Member


Date Joined May 2007
Total Posts : 458
   Posted 1/21/2009 8:32 AM (GMT -6)   
I think of little Hailey often and wonder how she is doing.  Your letter touched my heart.
 
Just wondering if her doctors were able to find out ANYTHING at all why the antibiotics worked? 
 
 
Dx:  UC Proctitis 2006 
Meds:  None so far. Garlic works to ease flares. My GI laughed when I told him and said it was just coincidence. 
Started Meds:  Apr 9 08 500mg 5ASA (salofalk) to ease flare, tapering, stopped. 
Diet:  Regular fresh garlic, Biobest yogurt daily, Omega 3 supplements, very limited junk food, carbs and processed food, low fat diet.  Lots of fresh fruit and veggies (limited potatoes). 
 Added: tumeric and probiotics.
 
 


haileys letter
Regular Member


Date Joined Nov 2006
Total Posts : 296
   Posted 1/21/2009 5:57 PM (GMT -6)   
 
 
 Thank you for thinking of her.  I read your signature , it says that garlic works on your flares.
 
  Garlic has antifungal and antibacterial components to it. It is also an anti-inflammatory.
 Cinnammon is also a supplement with antifungal and antibacterial components to it.
 
 Hailey still takes Natures Way probiotics,forvia vitamins,cinnammon, and turmeric daily.
 
 As for what the doctors were able to find. Her immuneoligist calls her a "Success story" 
 
 His explanation is that there is no way to tell the good bacteria from the bad bacteria in the colon, that is why so many people suffer from this disease. "They do what they know works"
 
 I just think there are so many different reasons people develope this disease.
 
Dave & Kelly
Daughter 8
Diagnosed at 15months with UC (pancolitis) then  Selective IgM defiency
Took many medications, no relief,GI wanted to start her on Imuran.
Took her to a natural doctor. He did a detox on her body.
Going to the restroom 15 times a day, developed pneumonia,recieved shots of Rocephin (wide sprectrum antibioitic) within24 hours of Rocephin bowels were formed.Since October 26 2006 she has been well without any medications. She takes Forvia multi vitamin ,Natures Way Primadophilus Reuteri, Viactiv calcium chew daily.
 
 
 
 
 
 
 
 
 


barbl
Regular Member


Date Joined Jul 2006
Total Posts : 320
   Posted 1/21/2009 9:39 PM (GMT -6)   

So good to hear from you and Hailey's success!

I too believe that in certain instances it's a problem with bacteria and the symbiotic balance between the good and bad bacteria is off.

I think there are many different diseases that are lumped under UC. Bacteria imbalance being one of them. I stopped all meds 10/01/2008. I take 6-8 probiotics (Digestive Advantage) a day. have had no problems.


Dx'D in 1990. Remission 1991 - 1/2005
Both flares were in extremely stressful times in my life
Colonoscopy 10/2008 mild UC
*****Digestive Advantage IBS formula 4 a day, 1 Forvia, 2 Metamucil.         ????REMISSION!!!????


haileys letter
Regular Member


Date Joined Nov 2006
Total Posts : 296
   Posted 1/21/2009 10:48 PM (GMT -6)   
 
 
 barbl,
 
  I am so glad things are going well for you. The digestive advantage is good. I have heard many good things about it.
 
Hailey does well with the probiotic that she is on ... so I haven't tried to switch.
 
 It is nice to hear from you!
 http://www.healingwell.com/community/default.aspx?f=38&m=643365&p=1<!-- Edit -->
Dave & Kelly
Daughter 8
Diagnosed at 15months with UC (pancolitis) then  Selective IgM defiency
Took many medications, no relief,GI wanted to start her on Imuran.
Took her to a natural doctor. He did a detox on her body.
Going to the restroom 15 times a day, developed pneumonia,recieved shots of Rocephin (wide sprectrum antibioitic) within24 hours of Rocephin bowels were formed.Since October 26 2006 she has been well without any medications. She takes Forvia multi vitamin ,Natures Way Primadophilus Reuteri, Viactiv calcium chew daily.
 
 
 
 
 
 
 
 
 


subdued
Veteran Member


Date Joined Dec 2008
Total Posts : 3231
   Posted 1/21/2009 11:50 PM (GMT -6)   
Yes. There are many reasons why we get Colitis. Sometimes antibiotics can help by destroying bad bacteria and sometimes they are the cause. Sometimes the digestive system is not working properly. Sometimes genetics plays a role...

I'm glad you were able to find something that worked for Hailey. It's bad enough we adults have to go through this disease. It's far worse for a child, whose body has not yet had a chance to fully develop, to have to go through it. I'm glad Hailey is doing well.
Joy - 47 yrs and counting
Diagnosed w/ UC Dec 06 (also have IBS)
Currently in remission

Lexapro (for stress)
Probiotics
Vitamins (a whole bunch of them)
Anti-inflammatory foods: turmeric, seaweed, garlic...
Avoid: anything with high-fructose corn syrup, foods high in fructose, artificial sweeteners


saposs
Regular Member


Date Joined Nov 2008
Total Posts : 339
   Posted 1/22/2009 12:07 AM (GMT -6)   
lots of blessing for dear Hailey, infact pneumonia was blessing in disguise :-)
Dnt worry she will be fine!
Something i would like to add, my friend used to be quite unwell when he was a little kid. One day they had a relative visit them and he advised to get him into outdoor games... that's it his parents made him busy with - boxing, swimming, basketball and there goes all the sickness!
Do check with your doctor if this could help sweet baby hailey :-) Physical exercises make kids healthy.
since Nov'2008:Mucus & Blood in stools, Gas, Constipation sometimes - No D !
Visited GI first time in Jan'09 first week, followed by Sigmoidoscopy/biopsy next week, results show mild inflammation in lower part of colon-advised Canasa suppository.


haileys letter
Regular Member


Date Joined Nov 2006
Total Posts : 296
   Posted 1/22/2009 8:59 PM (GMT -6)   
Thank you so much.
 Hailey is in gymnastics and she has become so strong compared to even two years ago.
 
 Thanks again for caring.
Dave & Kelly
Daughter 8
Diagnosed at 15months with UC (pancolitis) then  Selective IgM defiency
Took many medications, no relief,GI wanted to start her on Imuran.
Took her to a natural doctor. He did a detox on her body.
Going to the restroom 15 times a day, developed pneumonia,recieved shots of Rocephin (wide sprectrum antibioitic) within24 hours of Rocephin bowels were formed.Since October 26 2006 she has been well without any medications. She takes Forvia multi vitamin ,Natures Way Primadophilus Reuteri, Viactiv calcium chew daily.
 
 
 
 
 
 
 
 
 


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5181
   Posted 1/22/2009 9:09 PM (GMT -6)   
That's wonderful news about Hailey! And what a relief for you parents who went thru such frightening ordeals while she was so little; every day is now Thanksgiving. / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])

LeafsFan
Regular Member


Date Joined Dec 2008
Total Posts : 274
   Posted 1/22/2009 10:03 PM (GMT -6)   
I just read through some of the older post. What a great story!! Glad Hailey is doing so well!!
Chuck - 28 yrs and counting
 
Diagnosed w/ UC Dec 08 - pancolitis
 -----------------------------------
Pentasa 500mg 2pills-4x daily
Prednisone 50mg 45mg 40mg 35mg 30mg day - Calicium + Vit D
Multivitamin, vitamin C, probiotics, fish oil
 
"If you can solve your problem, then what is the need of worrying? If you cannot solve it, then what is the use of worrying?"


ithurtsmom
Regular Member


Date Joined Nov 2006
Total Posts : 289
   Posted 1/23/2009 12:37 PM (GMT -6)   

So happy to hear from you again.  Remember we started this journey together, it was such a blessing to me to be able to speak with another parent.  Rebecca is still on medication and supplements, but has had no flares since the original one when she was 5 (8 in May). 

 

I think of you often, tell Hailey to ROCK ON!!!

 

 


Joan
 
Daughter 7, UC
Asacol 2X2 plus 1x daily
Omega 3
Folic Acid 1000mcg.
Fiber
Probiotics
calcium
 


ithurtsmom
Regular Member


Date Joined Nov 2006
Total Posts : 289
   Posted 1/23/2009 12:41 PM (GMT -6)   
How did you ever make out with the study her DR. was going to do on her? Also, did doctors or pharma. co. ever respond to your letters?
Joan
 
Daughter 7, UC
Asacol 2X2 plus 1x daily
Omega 3
Folic Acid 1000mcg.
Fiber
Probiotics
calcium
 


haileys letter
Regular Member


Date Joined Nov 2006
Total Posts : 296
   Posted 1/23/2009 11:00 PM (GMT -6)   
 
 
 The only doctor that responded to me was Dr.  Tom Borody from Australia. It is sad.
 
  What he told us was that he did not have the time or resources to research it. 
 
 Even though what happened to my daughter made a complete difference on the way she has lived her life in the last two years. It is just wrong. I know how hard we worked and how many research doctors I sent Haileys letter too.
 
 As for the doctor that was going to do a case study on Hailey. It was given to a intern doctor  to follow up on what happened with Hailey. I was contacted and  asked to give a detailed report on what happened to her thoughout her years that she was sick. The intern doctor documented everything and it was brought up at a  convention in Florida for Research doctors.
 
 The last time Hailey saw her doctor which was at least 6 months ago
He just called her a success story.  Honestly it has been so  nice to just be able to enjoy life and not go to get an infusion monthly for her.
 
 I will tell Hailey to Rock on!!! God bless Rebecca!  I think of you and Rebecca often. I will keep you in my prayers.
 http://www.healingwell.com/community/default.aspx?f=38&m=643365&p=1<!-- Edit -->
Dave & Kelly
Daughter 8
Diagnosed at 15months with UC (pancolitis) then  Selective IgM defiency
Took many medications, no relief,GI wanted to start her on Imuran.
Took her to a natural doctor. He did a detox on her body.
Going to the restroom 15 times a day, developed pneumonia,recieved shots of Rocephin (wide sprectrum antibioitic) within24 hours of Rocephin bowels were formed.Since October 26 2006 she has been well without any medications. She takes Forvia multi vitamin ,Natures Way Primadophilus Reuteri, Viactiv calcium chew daily.
 
 
 
 
 
 
 
 
 


haileys letter
Regular Member


Date Joined Nov 2006
Total Posts : 296
   Posted 1/23/2009 11:01 PM (GMT -6)   
 
 
 Thank you to everyone for thinking of Hailey ....  I think of all of you daily.
 http://www.healingwell.com/community/default.aspx?f=38&m=643365&p=1<!-- Edit -->
Dave & Kelly
Daughter 8
Diagnosed at 15months with UC (pancolitis) then  Selective IgM defiency
Took many medications, no relief,GI wanted to start her on Imuran.
Took her to a natural doctor. He did a detox on her body.
Going to the restroom 15 times a day, developed pneumonia,recieved shots of Rocephin (wide sprectrum antibioitic) within24 hours of Rocephin bowels were formed.Since October 26 2006 she has been well without any medications. She takes Forvia multi vitamin ,Natures Way Primadophilus Reuteri, Viactiv calcium chew daily.
 
 
 
 
 
 
 
 
 


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 2/5/2009 9:18 PM (GMT -6)   
It's so good to see that Hailey is doing so well.

Thanks for popping in and letting us know :)
Pan-colitis and GERD diagnosed May 2003
Osteopenia (hip and spine) diagnosed Feb 2006
Status:  Remission
Asacol 12 per day,  Azathioprine 50mg, Aciphex, Effexor XR, Forvia, Fibercon, and Culturelle
Remicade: 1st infusion 06/17/08:  Next infusion: 2/3/09
Last Prednisone dose:  7/15/08
 
Co-Moderator UC forum:  Keep HealingWell running smoothly:  www.healingwell.com/donate

New Topic Post Reply Printable Version
Forum Information
Currently it is Monday, June 18, 2018 7:50 AM (GMT -6)
There are a total of 2,972,739 posts in 326,009 threads.
View Active Threads


Who's Online
This forum has 160851 registered members. Please welcome our newest member, Linda T.
386 Guest(s), 6 Registered Member(s) are currently online.  Details
LifeCointosses, CaliGirl81, Bebopgeo, Hardlyrob, DJKWUK, cppoly