Ulcerative Colitis Tips


One of the 15,000 ulcerative colitis folks using the site adds:
"Like many UCers I have spent many hours trawling the internet googling the condition and came across your website a few years ago. I read your ebook and really liked your honesty and humour. As everyone says your positivity is so encouraging and now this is my go to website when I'm thinking about UC. Thankfully my symptoms are pretty much under control at the moment but just wanted to say thanks." Kate

Our Texas UC Story

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

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!!

3 year old after colitis diagnosis

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.

Rylie the little girl from Texas with ostomy

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




21 Responses to Our Texas UC Story

  1. Kristin
    Kristin December 3, 2012 at 7:08 am #

    Your story is so inspiring! Thank you for sharing. My daughter, 6, is also diagnosed with UC and it has been a roller coaster ride the last year going through flares and remissions. We do practice SCD but for a child it is very hard especially when faced with birthday parties and celebrations at school. She was doing awesome for a few months and then Halloween did her in. When we stray too far from the diet we always get into trouble. But when I ask her if that Reeses peanut butter cup was worth all this she doesn’t say “no”. I am hoping it gets easier for her as time goes on and she matures enough for it not to bother her. I am also hoping for a cure in her lifetime. Having that bit of hope helps. Your daughter is beautiful and i am so happy that she is doing well. It is very reassuring to hear that one so young can have the surgery and do fantastic! Much love to you and your family.

  2. Marce December 3, 2012 at 7:46 am #

    What a super story. We are here in TX and hope we have a happy ending for my 11 yr old son on Remecade. He wants the surgery to have his life back too. God is good. Continued blessings.

  3. joanna December 3, 2012 at 12:12 pm #

    oh wow this story gives me so much hope!! i am so glad rylie is doing well. i think about surgery all the time to be honest. i just can’t seem to control my UC with natural methods and i’ve been trying for 6 years. SCD/paleo has done the same for me- it reduced my bm’s from 12-15 a day to 5-7 a day but still with all the pain and bleeding. it sucks because i really don’t enjoy eating this way and taking all these supplements! i’ve tried all the hard core drugs already except humira and will probably start it in a few weeks.

    it’s great that you have found a group of doctors that you love. that’s VERY difficult these days. i hope she keeps recovering and stays positive.

  4. Lea Ann (Rylies mom) December 3, 2012 at 1:00 pm #

    Thank you so much for all the kind wishes! God has truely blessed us with a remarkable little girl and I truely feel for all those who suffer! Rylie includes all those like her in her prayers every night! Her ostomy was the best thing that could have ever happened to her. I would have chosen her ostomy over her illness anyday! There are too many wrong assumptions associated with an ostomy and we know this first hand. When we had her take-down surgery I personally had mixed emotions. I didn’t want her to have to return to the life style of having to focus on where to use the restroom. I thank God for her incredible recovery!!! Here is a video taken in July of this year. She has an ostomy at the time and we were headed to the beach when she decided to talk about her experience.

    http://youtu.be/7p8VprKHi74

    • joanna December 3, 2012 at 4:57 pm #

      what a great video! i almost cried. so did she get a jpouch?

  5. Natalie December 3, 2012 at 5:29 pm #

    Hi Nick and Lea Ann!

    I had tears in my eyes just reading the story of your darling Rylie. The video was excellent! What a beautiful and BRAVE little girl. It’s so refreshing to hear that she got her life back. It’s too bad that she had to resort to surgery though. However, I guess it’s better that Rylie had it done while she was very young versus waiting until she was older. Children always heal so much quicker than an adult with less complications. I, too, wondered if she got the Jpouch (as Joanna asked) or does she have to wear a permanent ileostomy bag?

    • bev December 3, 2012 at 5:41 pm #

      Natalie!

      You have a picture!! Fabulous!

      Sorry to be off topic here…but it’s great to see you:):):)

  6. Natalie December 3, 2012 at 5:53 pm #

    Thank you Bev! I finally decided to include my pic. The only problem is that after I submitted the pic, I got a message from Gravatar saying that this is only temporary. They said that in 2 weeks I will need to start all over again and resubmit the pic. What a pain in the butt! (no pun intended here….LOL!!). I wonder what the reasoning behind this is. Did you have to go through the same process???

    • bev December 4, 2012 at 7:28 am #

      That must be new Natalie, because I’ve been using the same pic since I joined Gravatar and that was months ago.

      I have no idea what the reasoning behind that is! Hopefully, it doesn’t even happen…

  7. Lea Ann (Rylies mom) December 3, 2012 at 6:57 pm #

    She has a Jpouch. Her ostomy take-down surgery was November 5th of this year. :)

  8. Nick December 3, 2012 at 6:59 pm #

    Yes, Rylie has a jpouch.

  9. Katherine December 3, 2012 at 7:02 pm #

    Hello! I am 25 years old and about to have my third surgery.. the takedown. What an amazing daughter you have, and what amazing parents you are.. your story is so inspiring. I have been so nervous about the final surgery and what is to come, but if such a young child can go through this and be so brave, surely I can too. I am sorry to hear that she has had to deal with all of this at such a young age, I have had difficulties dealing with so much change at my age. I wish you the best and hope your daughter continues to get stronger and healthier every day.

    • Lea Ann (Rylies mom) December 4, 2012 at 6:45 am #

      Hi Katherine! And thank you! Rylie’s take-down surgery was a two day stay. Her pain was minimal and lesser of the 3. You’ve already been through the toughest part and the rest should be a breeze :) We did struggle a little at first with a rash, but Rylies so young she doesn’t wake in the middle of the night to use the restroom. We have to change her pull-up and this causes a little more irritation for her bottom. We did also give her some peptobismol to help slow the number of times for the first few days. Some cream mixtures we use are Mylanta, Hydrocortisone and an anti-fungal cream. You put a little of each in a bowl and mix and then apply…keep it in the refrigerator. Good luck and we hope the best for you!

  10. Natalie December 3, 2012 at 9:32 pm #

    What great news that Rylie has the JPouch. I am so happy for ALL of you! I’m sure she will live a perfectly normal life. God Bless Her!! Just another question….does anyone else in your family have UC? I was diagnosed with UC in October, 2011 and was a little puzzled because no one in my family had or has UC.

    • Lea Ann (Rylies mom) December 4, 2012 at 6:53 am #

      Thank you Natalie and no one in our family has UC but we do have some with IBS. Looking back we think Rylie has had UC since she was born. I breastfed her for her first year of life so she naturally had loose stools but even after she would eat solids they were still loose. Hope you’re doing well!

  11. shelly in maine December 4, 2012 at 7:03 am #

    Thanks for for sharing your inspirational story!
    I’m not sure if you read Shyloh’s story, but you definitely should…I think you should share stories and info…you can enter it in the search above…I tried to include it, but it keeps losing my posts!
    Anyway, continued progress and good health, Shelly

  12. Natalie December 4, 2012 at 12:33 pm #

    It is so sad that Rylie was born with this horrible disease. It breaks my heart whenever I read about young children having UC. It is bad enough when an adult gets it, but I think it’s so much worse for a young child to have to go through it. They just don’t understand what’s going on and they are so sickly. I aure hope a cure will be found soon! Thank you Lea Ann for the well wishes. I am doing fairly well. On occasion, I may have some slight blood and diarrhea. I have been able to eat almost everything since day #1. I just started taking probiotics in October and am feeling better already. Eventually, I am going to try to wean off my meds.

  13. Blake December 4, 2012 at 10:00 pm #

    I’m so happy for you and your family! What a tough little girl Rylie must be and very lucky to have such good parents. I’ve had my J Pouch since August 2012 and I’m having a lot of success with it as well. I’m 31 and have a 3 yr old boy and can’t imagine how scary this whole ride had to be for you guys. Thank God it’s over and she can move on probably not remembering much of this as she gets older. I love a happy ending! Congrats to Rylie, you and the rest of your family!

  14. Natalie December 4, 2012 at 10:17 pm #

    God bless you too Blake! I’m so happy to hear that your surgeries were a success….talk about a happy ending!!

  15. Susan December 7, 2012 at 11:02 pm #

    Out of curiosity did you have excess amniotic fluid during your pregnancy? I wonder if there is a relationship between excess fluid during pregnancy and colitis/crohn’s later on.

    • Lea Ann (Rylies mom) December 16, 2012 at 8:47 pm #

      No. I did have a UTI and took antibiotics during my first trimester. Other than that Rylie was born with a normal birth weight and a vaginal delivery.

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