Meet Nick (Rylie’s Father):
My 5 year old daughter Rylie was diagnosed in 2010 and had UC I repeat HAD UC until May 2012! My daughter likes all outdoor activities such as bike riding, fishing, and swimming! She loves all kinds of animals and playing with her 3 year old Little Brother who she calls her bother!!! She also loves clothes, makeup, and as my wife says: she loves LOVE and all it is about….we are very lucky parents!!!!
Rylie October 2011 while taking steroids
UC Symptoms:
Right now there are no UC symptoms to talk about…..just a good ole normal, happy, growing, full of energy little 5 year old.
Rylie’s Colitis Story:
Well it all started when my daughter was around 1 1/2 to 2 yrs old and my wife and I noticed that our daughter was always having loose stools and was somewhat sick alot of the time. We started asking questions with our pediatrician and some basic tests were done. Fast forward about a year with alot of the same symptoms plus a child with no appetite or any energy to do anything. By this time our questions had lead us to start seeing a specialist in Houston, TX. He did another list of tests and found nothing…at this time he suggested we either wait to see if it goes away or have a colonoscopy done.
Well we decided to wait and see if her symptoms got better. At this point in her journey she was having around 15 to 20 bowel movements a day with a small amount of blood in her stool. Spring forward another 6 to 8 months and we are lead to another GI specialist in Round Rock, TX named Dr. Jatla. He looks through Rylie’s records and says its time to do a colonoscopy…..we agree! He comes out and tells us he is diagnosing our daughter with colitis. You can imagine what our world felt like at this time…. first what was colitis and second how were we going to get our daughter better. Jump one more time through all the medications up into 3 infusions of remicade….nothing WORKED! By this time her symptoms were around the same but throw in the cramping and a larger amount of blood in the stool. At this point Dr. Jatla introduces us to THE SURGERY!!
Rylie 3rd birthday 3 months after diagnosis
We agree and set it up….the 1st two surgeries were not by any means easy but they were manageable. The last surgery was a breeze!!!! Today she is about 3 weeks post take-down surgery and guess what my wife and I have our daughter back!!!! She is full of life, full of excitement, and just loving all that the world has to offer. Currently she does not have any pain, she isn’t on any medication, and she is having about 4 bowel movements during the day and 1 to 2 at night…I know pretty awesome RIGHT!!! I do want to add that through the time pre-surgery we tried what most of us do…we attempted to do what ever possible to cure her. I will admit that the SCD diet did help, it dropped her 15 to 20 bowel movements a day down to about 7 to 9 but it was the pain and her low blood work numbers that couldn’t be controlled with all the medications in the world.
On the surgery….it was the most roller coaster ride of emotions that my wife and I have ever been through as any parent could imagine. Our surgeons Dr. Danny Little and Dr. Perger of Scott and White in Temple, TX are just down right AMAZING!!!! So were all the Hospital staff and all others involved with this journey we’ve been through….I highly recommend this group for anyone in Texas or others willing to travel to get help with their Ulcerative Colitis case. Rylie’s surgery was all done laparoscopic and her scares are WHAT SCARES they’ll probably be gone as she grows up….really they are small. The only complication that she did have was she developed a fistula after her second surgery but Dr. Little & Dr. Jatla got together and came up with a plan of 30 days of flagly and Dr. Little did install a few stitches from the vagina….she did have her loopostomy during this time as well so it did allow the fistula to heal and Dr. Little took his time and really verified that it was healed before the take-down surgery was done.
October 2012 still with ostomy
At this time I would like say thank you to our AMAZING GOD who not only worked through the surgeons but also our family and friends who showed us great support over the last few years…we are truly very, very, blessed. I love you dear lord and thank you for all that has occurred. I also thank all that are out there who struggle with UC and have given their knowledge and advice on web sites like this one…it does safe lives.
For all struggling with UC keep your head up and kept fighting the best way you know how!!!
I will be happy to help in anyway I can so if anyone has questions email me @ nick_ragusin@yahoo.com!!
Medications:
No medications anymore!!!!
Thanks to All,
Nick
submitted by Nick in the Friends and Family Venting Area
My name is Nick and my 5 year old daughter Rylie was diagnosed in 2010 and had UC I repeat HAD UC until May 2012!
