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My 8 y/o son was just diagnosed with UC a few months ago. It has been a roller coaster ride trying to figure this disease out and it seems like all the doctors want to do is prescribe medication. He is on 3 medications so far (asacol, omeprazole, and canasa) which to me seems like a lot for a kid. He also takes a multivitamin and when I can get him to florastor for kids. He just had blood work done to check for an enzyme which came back low which apparently means that if he were to go on immunusuppressive drugs that he would require a lower dose due to toxicity (??). I would like to hear other people's stories, any suggestions anyone may have, and how to cope. Prayers are also welcomed.

Thank you

 Reply posted for AZMOM.

Was your daughter placed on the 6MP from the start?? I am glad to hear she has been in remission for 18 months. We were just diagnosed in December so have only had the one episode thus far and boy it was a whirlwind experience. Do you mind me asking.....What happens when a flare up occurs??...What should I look out for?? My understanding is abdominal pain, diarrhea, and bloody stools. How long do flare ups last??? Does your daughter follow any special diets or eliminate certain foods?? When I ask the GI about diet he states that my son can eat anything he wants but I have a hard time believing that. However, he is only 49# and will be turning 9 this month....maybe because of his weight and height he feels he should eat whatever he wants.  I am looking into another diet that another writer posted called the gaps diet....have you heard of it?? I am sorry I have so many questions and you don't have to answer if you don't want .

I have tried to find a support group in the area and there are none which I am really surprised. This is the only place I am aware of for information.

How is your daughter doing now? I hope all is well.

Take care,

Melissa

 Reply posted for blynnmck.

I totally understand what your going through. One day your child is healthy and not taking any medicines and then all of a sudden twice a day doses. My son takes two oral meds and the supposatory at bedtime. He is used to it now but at first kept asking why he has to take this stuff. He even asked tonight at bedtime if he will have to do this forever. The immunosuppressive drugs are used for certain types of cancers and RA is what my understanding is. That is why I fear them because they target the immune system and can have nasty side effects. I am going to look into what another writer posted about "LDN" and gaps diet. I figure I better educate myself as much as possible.

My son was asking about going on a week long camp today in the summer about 4 hours from home. All I could think about is what if he has a flare up during that time and how will he take his medications. I don't want this disease to run his life. I also worry about teachers not letting my son go to the bathroom when he needs to and fear accidents for him. Right now his 3rd grade teacher is awesome and they have a secret signal for when he needs to leave to go to the bathroom so that he does not get noticed as much. I have heard some people's teachers are a nightmare. Most don't understand this disease and need to be educated.

Hang in there and stay strong. I am here on this end. We live in Minnesota. My name is Melissa and my son is Noah.

 Reply posted for alanschachter.

Alan,

I looked at the diet on line. It is such a change from our normal eating which I am not surprised to see. Can you implement parts of the diet?? My son is such a picky eater that I just don't even know where to start. How did your daughter respond to the diet??

I am also looking into the ldm you mentioned. My son's GI just keeps saying that the next step is 6MP (I think I have that right?)

Melissa

 Reply posted for babybluenrw.

we had to go to twirling competition this weekend and she almost missed getting her award because she had an accident and was in the bathroom trying to clean up.  i thought she was back stage with the other girls and paniced when she didnt come out and no one knew where she was.  she had to do all that by herself. i felt terrible. she told me she had an accident at school the other day and wore it all day cause the teacher told her to come straight back after going to the bathroom so she was afraid to go to the nurse.  i sent the brochure for teachers to school the other day but no one has called me to ask any questions. i'm gonna lose my mind i think.

i started my own post too, i don't want to take up this posters space. we all need all tha information we can get 

 Reply posted for babybluenrw.

Hi - Claire maintained remission for almost 18months on 6MP.  No "scary" side effects - no hair loss, on opportunistic infections, less illnesses than her "healthy" brother.  

I've yammered on in this post  so if there is anything specific I can offer, please tell me.  I'm an open book and happy to share our experience.

 Reply posted for blynnmck.

I too am a nurse and was surprised by this diagnosis of UC and still not understanding it completely. I was surprised by how fast everything came about too. My son's disease started in September of last year with a diagnosis by the end of December. One moment my son is healthy and the next in pain, not eating, and on the toilet all the time. I was so concerned and confused by what it could be at that time. My son is now on 3 medications and Florastor for kids. At this point he is in remission BUT FOR HOW LONG??? Because it sounds like this disease can recur at ANY time. My sons GI MD always says "he needs to come in if he has loose stools and abdominal pain." One thing that scares me is the immunosuppressive drugs. How is your daughter doing??

 Reply posted for babybluenrw.

my 8 y/o daughter was just diagnosed on Friday.  I'm an LPN and feel like i dont even understand all of this.  She has only had symptoms for 5 weeks. complained of a stomache off and on but it didnt seem to be that severe she would continue to play as usual and is into all kinds of extra curricular activities like dance and twirl. Then she told me she had blood in her stool. i figured she was just constipated so didnt pay much attention then a week later she said it was still there, so i told her to let me see. I couldnt believe what i saw i knew it was more that just a small tear. Her pediatrician did an exam and said it was a tear and should get better in about a week. when it didnt he refered me to a GI and he thought it was a tear and put her on flagyl. after another week with no relief of symptoms i called the GI back. By this time she was in the bathroom more than she was out. 3-4 times a night having accidents, and i couldnt tell how many times during the day. so we had a colonoscopy on Friday and confirmed Ulcerative Colitis.  All this just came on 5 weeks ago all of a sudden. I have been on this web site all weekend. Im scared to death now.  The condition has been inconvienient so far but the things ive been reading seem like its terrible. I dont know if its just because she hasnt had it very long yet, or she's so young, will it get worse than this? will she really need to have a psychologist? I have so many questions i cant even think of them all. any help or advise will be greatly appriciated.

 Reply posted for alanschachter.

Thank you Alan.....I will research this information.

 Reply posted for Mom2One.

I agree 100% with you. I wish I could take this disease away for my son. I would rather have it than him. MP6 is the next drug our doctor is going to use.

Hang in there and thank you for your response. Like I said earlier it is nice to know I am not alone.

 Reply posted for babybluenrw.

She is on Methotrexate right now.  She was previously on 6MP but it stopped working.  She was able to maintain on Asacol for about a year but then got pancreatitis.  I like to think things happen for a reason but I cannot see any reason for my child (or anyone else's) to suffer like this. This is no way to spend your childhood years

 Reply posted for Mom2One.

Thank you for your response. It is nice to know I am not alone in this battle with UC. Is your daughter on the immunosuppressants?? How is she doing with that if she is?? That is our next step.

I hope we have a good doctor. He seems all right so far. This is so new to me. And, you are right about the denial piece. It is hard to believe this is happening.

Hope all is well.

 Reply posted for babybluenrw.

Sorry to hear about the diagnosis.  I know it seems like a lot of medications for a child to take....I have lost count of all of the meds my daughter takes!  but I am also thankful they are available to help (especially nausea and pain meds!!!)

I hope you have someone to talk to - the initial diagnosis is so stressful. I think I was in denial for a long, long time...part of me still is!

A good Dr is key - one you feel really comfortable with and who makes him or herself available to you.  Hang in there