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My son has been newly diagnosed with Ulterative Colitis, and I just can't get over the pain of seeing him cramping and just recently started passing blood.   I keep saying why, why why.   I was so devasted that I could not even function at work.   I need a friend and some support.   He is presently on Lialda and just started hydrocortisone enemas.  I am so scared and never know what to expect.   He is taking it like the champ he is.

I just need to vent and express my feelings to parents who are going through the same thing as I.   

Thanks for listening

Reply posted for hammertime1121.

Hi; my son recently diagnosed with UC. He is on mesalamine 1.2 GM x2 daily. He is flaring up so we on hydrocortisone enema from today. 

how much Lialda your son was taking, you mention 3 tablets daily ... how many grams. 

please share ! Thanks 

 Reply posted for hammertime1121.

Hi There,

Along with many others I know exactly how you feel. My daughter is 14 and got diagnosed last March with Colitis, she was doing great until July when she had a major flare. She is currently on 4 different prescriptions (15 pills a day) and I know how hard it is to see your child in pain. She has a few side effects from her medication (moon face/acne) but she is dealing with it quite well. So if this illness is not enough for her to deal with, last Friday night I drove an hour to take her to the Childrens Hospital because she was in extreme pain and vomiting and it ended up she had Kidney Stones, she was admitted, given morphine and we spent 4 days in the hospital. Yesterday she went back to school and so far is feeling pretty good but it is a wait and see game. I to am new to this and I don't have a lot of experience or information but I do have a open heart and would be willing to listen to you anytime you need. This goes for any parent looking for someone to talk with, it is always good to vent/share your feelings.

Momcat

 Reply posted for LAB.

Hi!   We are still battling the flare-up with medication, prayer and trying to maintain normalcy.    It hurts to see my son a top student have his grades decline due to absenteism and having to leave early, go in late, etc.   Dr. says he has to try and stay in school as much as possible and continue with sports (track).   He says pain is part of the healing process.  He has not lost weight.     He is at the point of being annoyed at the entire illness and not wishing to speak about.   I guess it's so hard for a teen to deal with this, not to mention us as well.   What state are you in?   I am in New York (Long Island).

In any event, I will hope your daughter feels better and better and that the procedure can rectify her pain.

 Reply posted for hammertime1121.

Hi

My 15 year old daughter was just diagnosed with pan ulcerative colitis last thursday.  We are now already facing surgery and ileostomy due to the seriousness of her condition.   Has your son lost a lot of weight? 

This is definitely a difficult road to travel.  We have had so much information given to us in the past 3 weeks, via tests, Dr. visits, and now her hospital admission.  We can probably relate to many of the same experiences our kids are having.  You said your son has been dealing with his diagnosis like a trooper.  I'm sure he is.  Is he willing to talk with other kids who also have UC?  I'm trying to interest my daughter in doing that, but so far, she hasn't taken the bait!   I know how I feel, I always like to meet and talk with others dealing with the same thing so I don't feel alone.

please write back, I'd be glad to talk with you. 

Lisa

 Reply posted for hammertime1121.

I know exactly how you feel.  My daughter was diagnosed with UC when she was 16 (4 years ago).  She's been on many meds.  Currently she's on 4 Lialda per day.  Her IBD specialist here in Los Angeles said she could stop Azathioprine since she was getting so sick with so many illnesses (strep and tonsilitis and many rounds of antibiotics).  He wants her to double up on her Women's One a Day multi vitamin and probiotic.  The probiotic she's on has helped her so much and maybe it would help your son too.  She's on Ultimate Flora Critical Care 50 Billion.  She now takes 2 per day.  It's expensive (at least $1 per capsule) you can check it out online and actually buy it online it's made by Renew Life.  That has really saved my daughter.  Her IBD specialist said many UC patients get "bacteria overgrowth" and the probiotic helps.  Also watching her diet with no junk foods, no greasy foods, no fast foods, no foods with added sugars like sodas or any other types of foods like candy. No processed foods.  Limit dairy, no meat (like steak). My daughter is allergic to fish but fish is great (salmon).  She can eat chicken and soft vegetables (no raw ones), peel all skins on fruit too (during a flare up just eat fruit in the can packed with it's own juice NOT syrup (added sugar which is a no no).  Keep a food diary too.  I know it just breaks your heart seeing him that way.  My daughter is doing really well now and she's away at a 4 year college after transferring from a community college.  There's always the disability office for her if she needs help there.  I think you can find a really great doctor in NY that is a specialist if you aren't happy with your current doc.  My daughter is on her 4th doc and loves him.

 Reply posted for Momcat.

thanks so much for your support.   I wish I can take away his pain.    My tears and heartache just don't stop.    It's been about three weeks of pain and blood, missing school and just trying to find answers.   Hopefully, our children will go into remission and lead normal lives.   I live in Long Island, New York and am presently at the point of trying to find a support group locally.

Hope your daughter is feeling better.   He is presently on 4 lialda's daily and hydrocortisone enemas.   My doctor wants to stick it out with this treatment before jumping to the next level.   Thanks again for your words - having your kindness and support helps.

 Reply posted for hammertime1121.

I know exactly how you are feeling, it is scary and sad when you are unable to make your child feel better. My daughter is 14 and was diagnosed with UC, she has been quite sick since July and is taking 4 different medications (15 pills a day) and it has been so very difficult, but she is slowly starting to improve. All I can say is it makes a world of difference when you speak with other parents so if you need to vent I am willing to listen as I am new to this as well.

 Reply posted for hammertime1121.

I just commented on your other post.  I can truly relate - you need a friend, supportive ear, I am here.  Onedreamer@juno.com

My daughter is 14 and also has UC.  Email me - we'll chat.