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Dear Jacksons mom,

My son Seth was also diagnosed last year at the age of 4 with UC.  Actually, he first was diagnosed with having C-diff after taking antibiotics for a sinus infection.  After being hospitalized 3 times with in 6 weeks unable to get rid of the C-diff, we had a colonoscopy that revealed thousands of ulcers from his rectum to his colon.

So, your story sounds very familiar to me.  If you want, contact me through email, and maybe we can talk on the phone.

scottijohns@hotmail.com

 Reply posted for Jakesmom.

Hi all parents that have little kids with Ulcerative Colitis,

My daughter was diagnosed with this diseaese at 18 months. I can understand how you feel, she has been on every Med that is out there. Her body formed an Immunity to Remicade and she is allergic to steroids. After being in and out of the hospital for months, at the age of 5 had a total collectomy and pull through. It was suppose to make better, but it didn't work. So after a lot of pushing the doctors she now has an illeostomy at the age of 6.

 Her life is great now! She is longer home schooled, she is so happy. It is the best I have ever seen her, She has friends and is independant... There is hope, this may not be the best for everyone. For her and our family is has been the best thing we ever did!

 I am going to school on-line because as you know I can't work with her like that. My english class requires me to write a research paper, I want to help other parents that have been in the same shoes as us..  My daughter has had many social problems that come from going to the hospital so often, and unable to form relationships that are made from going to school. If any one would mind sharing some of their struggles that they have seen stem from their children I would love to use them in my paper... Some my daughter has had are deppresion, self image problems (because she had to wear  pull-ups) lack of confidence...

Anything you can share would be helpful! I feel for these kids that face these challenges~

Tammy

 Reply posted for Jakesmom.

Dear Jakes mom,

I am so sorry to hear about your son Jake.  I know it so hard to watch our little ones hurt and not know what to do to make it better.   I will keep you and your family in my prayers, hopefully something will start working  soon to help with the flare ups.  Is Jake taking probiotics?  My son Seth has not had a real bad flare in about 4 mths now.  He has mild flares often where he will go 3 to 4 times in a day, and usually doesn't make it to the potty before he messes his pants.  I have recently started making Seth wear a panty liner during that time, it is so much easier to clean up and not have to change his under pants as often.  Let me know if there is any thing I can do to help.

Scotti

 Reply posted for scotti johnson.

Hi Moms, when I read your two emails, I started tearing up.  It sounds like our story.  I'm desperate to find a forum for parents of young kids (vs. teens or adults) with ulcerative colitis.  I'm so glad that I may have found it.  My son was diagnosed at 4.5 years old and is now 8.5.  I'm starting to see what I think is long-term pyschological damage in him because he is constantly dealing with the yucky parts of this disease.  He cries on the potty about how he just wants to be normal, etc.  It breaks my heart.  We have really good children's hospital doctors who stay really close to his situation but nothing seems to make his disease better.  He has a moderate to severe disease but it is very constant.  The only thing that has put it into a remission-like state are steroids.  He changes so much on steroids - my sweet boy turns into a nightmare and he has drastic physical changes too (which scare me when I think of the long-term damage).  We just got him off steroids that he had bene on since last April to this April to try to manage his flare.  He has frequency issues along with bleeding.  They keep testing him for anemia and we watch him for dehydration - so far he hasn't need to be hospitalized.  He has accidents and cries because he doesn't want to go on outings.  We carry extra clothes with us too.
We have spent the last month fighting the frequency/bleeding stuff because we are trying to keep him off steroids.  He's on Dipentum but it doesn't seem to cover him.  He has tried Imuran & Sulfasalazine.   My heart breaks for him every day and it's a hideous disease when it's flared.  We did discover that it seems like dairy makes his flares worse so we avoid that.  We  have seen allergists and he doesn't "skin test" for any.  We do homeschool for this and other reasons so we don't have to worry about him having symptoms at school.
Jake's Mom