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My son was diagnosed with UC last year at the age of four.  I feel so selfish to say that I am struggling when it should be my son saying those words.  He is a fighter and strong and doesn't complain about much at all.  I have had a hard time finding much information on children being diagnosed at this young of an age.  I know that, as a parent, it doesn't matter what age they are, you will feel the same.  I am just overwhelmed.  He has been on several medicines, including prednisone which changed his behavior and of course his appearance.  After his first flare up and they finally got him off of the prednisone, he has done very well on Asacol until just recently.  He was given a round of antibiotics to clear up a sinus infection and after taking it, he began bleeding again and having sudden urges to get to the restroom.  His iron level went down and they put him on iron supplements and then took a stool sample.  The doctor told me that he has C-Difficile and he had to give him antibiotics to get rid of it.  He has a week left on the antibiotics and he is still bleeding heavily and going often.  They are going to retest him after his meds. are finished and then if he is still bleeding, they are planning on putting him on the prednisone again.  I am dreading it and I feel like I am at a complete loss.  I took my son to the zoo today and he had an accident right away and he cried because he thought we had to leave.  Luckily, I had a change of clothes for him with me, but it was gut wrenching for me when it hits me that this is his life and that there is nothing I can do about it.  Any advice for me or things that you think I should consider or do. I just started him on a probiotic in hopes that it will help something.  I just don't want to add to the problem.  I could really use some advice, friendship, and understanding from anyone going through this. 

 Reply posted for Jacksons Mom.

Hi!  My son  was diagnosed with crohn's right after he turned six.  I know exactly how you are feeling...it has been a 2 year roller coaster.  It is the most difficult thing to watch your own child go through the pain, tests and frustration.  There are many days when I break down and I don't think I've ever seen him break.  He slips in an "I don't like when..." every now and then, and then it hits me all over again...how hard it must be for him.  My son recently started remicade and appears to be doing much better.  We just hope that this will work for a substantial amount of time.  And just today I went to see a counselor about him, someone for him to talk to since he doesn't let much out.  Well, needless to say we are all going back as a family.  It truly affects all of us and I think it will be good.  As I was leaving the counselor said, "You're not alone anymore."  It hit me really hard because besides my husband, nobody can really know what it is like to care for a child with a chronic disease, unless they have or are going through it themselves.  I know what you are going through, I have felt and do feel the same way you do...it isn't selfish, it's being a loving mother!

 Reply posted for Jacksons Mom.

My son Danny was diagnosed at 3 years old. He is now a 16yr old sophmore who plays football & track at his high school. Your stories really brought back alot of memories - most of them heartbreaking! 

 Reply posted for Jacksons Mom.

Michelle,

What meds is Jackson taking for C-diff?  I ask because my son, Seth, had C-diff and along with the UC and it took us 7 months to get rid of it. He took flagyl for several weeks and did fine while he was taking it, but 24 to 48 hrs. after stopping the med. he was so sick we had to take him back to the hosp. again.  Next we tried both orally and intervenious vancomycin.  He stayed on vancomycin several months, again he did fine until we stopped the meds.  I finally contacted a doc. 4 hrs. away from us that changed all of the meds. Seth was on and put us on Colozal instead of Pentasa (for inflamation), a seroid burst- which was the first time for steroids, and a stronger antibiotic.  With in 2 weeks, for the first time in 7 months, he tested neg. for C-diff.  Just wanted you to know that is more difficult to get rid of the C-diff with UC.  It has to be treated more aggressively.  Also, from what I was told by our doc. is once you have had C-diff, you are more susceptible to getting again when you take antibiotics.

 Reply posted for Jacksons Mom.

Hi there!  My son was diagnosed with Crohns last year.  He is 7.  I do not think you are selfish at all to say you are stuggling with this.  Watching my son go through what he has been through is by the far the hardest thing I have ever been through in my life.  It seemed to start last summer in June and he was finally diagnosed in October.  I know it takes alot longer for some peoeple so I always feel selfish when I say those were the worst 4 monthes of my life before he was finally diagnosed.  He is doing better now that he is on medicine and his doctor is great!!  Anyway, I wanted to let you know that you are a wonderful mother and there is nothing wrong with hurting for your child.  The important thing is to stay strong for him and keep positive.  I also know what it feels like to  cry and feel bad when they are going through a bad flare or having bad side effects from medicine but I always cry about it in private or call a good friend to vent.  I try never never to let my son see how his pain hurts me because I think that makes it worse for the little one.  Anyway I wanted to send my support your way from one IBD mom to another...hang in there and be strong.  God Bless you and your little one.

 Reply posted for Jacksons Mom.

my daughter was diagnosed with uc 2 years ago when she was 16.  it's so hard to watch our kids go through this.  my daughter has been on many meds too.  she is currently on azathioprine and lialda.  i was wondering if they tested your sons stools?  my daughter had it done 3 times (i can't remember if it was every week) but it was 3 times to see if she did have c diff which i believe can be helped with antibiotics but it's hard to get rid of.  my daughter is also on one women's one a day and one probiotic called ultimate flora critical care 50 billion.  it would be different for your son since he is 4 years old so i'd probably check with the doc about if there is a probiotic he'd recommend.  i know you started him on one.  i really hope it works for him.  my daughter's 18 now so she started seeing an adult ibd specialist instead of the pediatric docs she was seeing.  this is her 4th doc who also does alternative medicine.  he said lots of uc patients have bacteria overgrowth and he actually recommends the probiotic that my daughter is on.  i went to whole foods and they really helped me.  i'd also recommend changing his diet a little.  you probably already are but i'd say to limit dairy, no seeds, nuts, peel anything with skins like peel the apple skin, peach skin, etc.  no hotdogs, dilute fruit juice and only get juice with no additives and no foods with those additives.  no added sugars.  i know it's so hard.  they have some foods that are gluten free that may help also.   i'm hoping he'll be ok soon.  i know what you are going through.  my daughter had a flare up for 4 months when she started college.  since she's been taking the probiotic she feels so much better.  i also wanted to mention that ccfa has a camp that is so fun for kids with ibd.  please keep us posted.

 Reply posted for Jacksons Mom.

I am not a mom.  I have Crohn's, not UC.  What your son is going through is 100 times worse then what I have been through.

My words to you, Jacksons Mom, keep doing what you are.  Being there for him, giving him the emotional support he needs and lots and lots of lovins.  My financee has been a tremendous strength for me when I am down and just having someone there, it means more then anyone could ever understand.

From the sound of your words, Jackson is very fortunate to have you for a mom.