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Hi everyone

My name is Simone and I have a 13 yr old daughter who was diagnosed with UC about 2 yrs ago. She has been through a lot - Asacol, Prednisone, Enemas, Lialda, etc.  She had pancreatitis earlier this year and was hospitalized with C. Diff in June. After a rough summer weaning off of Prednisone and starting 6 MP she was doing really well up until a week ago. She started flaring unexpectedly and it still very sick. It is so frustrating - she was finally like a "normal" kid and really enjoying life After Thanksgiving she started with diarrhea and then bleeding, pain, fatigue, etc.  We all thought we had finally found the right medicine (50 mg of 6MP) and that she would stay healthy for a while. I was finally comfortable telling people she was doing good when they asked - for so long all I had to say was negative, depressing things because she was sick for so long.   I feel so alone because my friends kids are all healthy and get to do fun things like dance classes, go to parties and not constantly worry about germs and getting sick.  Thankfully I have a part time job that I love and they are very flexible about letting me work when I can.and that helps keep my spirits up. My husband is a great guy and we do our best coping with her illness and all of the expenses that come with it..he suffers from Crohn's - my daughter was actually diagnosed BEFORE he was!  he goes for Remicade infusions every 8 weeks and has had no problems at all.

So, my questions to you all is how do you cope with it all?  How do you deal with the feelings of a child who feels hopeless from time to time? When your child does have a flare, how long does it usually last and how do you handle it? (steroids, probiotics, etc)  

Yikes, this turned out to be so long!   I look forward to finding someone here to offer and get support from!  Thanks for reading this :)

 Reply posted for Mom2One.

Hi There,

I was just reading your post again and I am amazed how our daughters are so alike, I know there are probably so many like them but your post is exacty my life. About two weeks ago my daugher got really sick and I thought it was another flare but I was just told the other day she has C-Diff and with all my reading I see how common it can be with Ulcerative Colitis. She is currently taking Iron Pills, 6mp, Flagyl and Colazol and she was on Cort-Enemas till they found the C-Diff. I am so tired, and so sad and I hate that she can not be a typical teenager. I am always saying no to going places because she so easily forgets how quickly she can feel crappy. I am hoping one day life will be good.

Thinking of you.

 Reply posted for Mom2One.

I hate that we can all relate to one another - but at the same time, I am so grateful that we can.  Does that make any weird sense?  My daughter too is 14 (if any of yours are interested in chatting, I can get them in touch with her - sometimes that alone helps.)

Any way she was diagnosed with UC just 3 years ago, just before she turned 12.  The first 9 months or so were great.  She was on 6MP and responded wonderfully to the medication.  However, her liver did not so the dose had to be reduced - and then she flared   She was very sick for almost two months before she ended up in the hospital in the spring of 2009.  She was a mess.  At that time they switched her to Humira.  Not a fun experience when she is terrified of needles. After a week she was released, weaned off prednisone and about 6 weeks later became symptomatic again so back on prednisone.  After 11 months she was switched to weekly Humira (as opposed to bi-weekly)  She still didn't gain any ground.  Had a horrible experience with Remicade.  Was put on Cymzia last fall and is not responding.  Was a week in the hospital - prednisone for over a year.  *sigh*  She has exhausted all her medication options and will be having surgery in just a few weeks.

I do get frustrated that I can't fix it, walking helps as does my Christian faith.  Most of the time I just have to remind myself that it is out of my control.   Hope this helps a little.

 Reply posted for Mom2One.

hi, my daughter story is like those mentioned on here. she is now 14 yo diagnosed 2 years ago. she has been hospitalized 3x for "flare ups" and 1x was C-Diff. she was on prednisone for most of the year and had negative reactions to some drugs (remicaide) and blood work showed she is not a canidate for others. She is currently taking lialda, vit D3, folic acid, prenatabs, prilosec, flagyl, and 2 injections a week of methotrexate and humira (and ondansetron before and after the methotrexate for the nausea). we have met with a surgean due to possibility of needing surgery, and work along with a psychologist. my daughter in the last 2 weeks decided she was tired of the injections and is refusing it (the humira hurts). she has been feeling better finally for a few months, but i am fearful of a set back now. I also struggle with the monthly expenses of doctor visit copays, traveling to the appoointments out of state, and medication (even though i have medical insurance). so, in regards to your concnerns, well i treat my daughter like a "normal child" and the disease second. (by the way i also have a step daughter who is diabetic at 14 yo). does anyone have thoughts on high copays for meds (i have looked in many places and have used various pharmacutical company discounts already, but with the new year some changes their policy coverage.) I currently only pay $5.00/month for humira through humira assistance, but Lialda no longer covers children under 18 yo (on there $10.00/month meds).

 Reply posted for Mom2One.

I think every parent here has walked in similar shoes at one time or another.  My daughter was sick from infancy and as her Mom, I knew something was wrong.  After being mis-diagnosed a couple of times, she was finally confirmed CD @4.   I thought I was on a never ending roller coaster.  I suffered from a period of depression and then I finally came to terms with the fact that knowledge is power. So, I picked myself up, dusted myself off, and read everything I could to get educated.  

As for dealing with the stress factor, I run, do yoga, pilates.....I find it really helps and I'm a better mother to my kids when I do it.  

My daughter will turn 11 in Jan. and I have to tell you, we have had our share of ups and downs, but the big picture is beautiful.  Once we figured out what foods worked (were safe) and which ones weren't, things improved.   If you haven't gotten that far with it, it is a daunting task, start a food journal.  Our doc recommended a low fiber/low residue diet and at this point, Lizzie knows what she can / can't  tolerate and when she can "cheat".   I make sure I always have a number of "safe snack" options in the house, this way she has a choice. 

There is a "teen" section on this site and it may help for her to check it out.   I can also recommend Camp Oasis.....Lizzie has gone the last 2 yrs and can't wait for this summer.   It really is a rewarding experience where they can just be "ordinary" and have fun.  

Lizzies Mom

 Reply posted for Mom2One.

Hi There,

I know exactly how you feel, I don't have any answers or medical info that you probably have not already read, but I just wanted you to know that there is always someone to talk to. My daughter is 14 and diagnosed last March with UC, she was not bad then and seemed to be doing quite well till the begining of July when she had her first major flare, she was put on Cortifoam, 6mp, Prednisone, Colazal, & Ciprofloxacin and around the end of November (5 months later) she was weened off of Prednisone & Cipro so she is just taking Colazal & 6mp right now. About 2 weeks ago we were in emergency with what ended up being Kidney Stones, she spend 4 days in the hospital. I got her the flu shot to better protect her and started her on a few different vitamins but she is just not herself, the last few days she has lost interest in eating because she is feeling some nausea. So many days I just don't know what to do anymore, will her days ever bee good. I feel so sad for her as I want her to enjoy her teenage years. We'll I just wanted you to know that I really do know exactly how you feel and if you ever need someone to chat with I would be very interested.

 Reply posted for mygirlrj.

Hi

Yes! I forgot to add she is using Cortenema right now.  I also give her Florastor.  I think the enemas are working but it has been very slow.  Still, it is WAY better than having to take Prednisone and deal with all of those HORRID side effects!

Thanks for your reply

 Reply posted for Mom2One.

Hi Simone-

I am so sorry that you guys are both suffering. It is such a scary disease- especially when your dd is flaring.

I have a 10 yr old dd in the same boat. We have been diagnosed for a year now! My dd is also on 50 mg 6-MP. We have had a lot of success with the probiotic VSL#3- it is expensive but a very good supplement- I give my dd 1 1/2 packets a day after breakfast.

While your dd is having diarrhea/blood have you used Cortenemas?

My GI thought it would not help but it does- We use it as needed- you can use it in the am/pm while flaring and hopefully it can turn things around.

What has your GI suggested you do while she is flaring right now?

 Reply posted for Mom2One.

My daughter was diagnosed with UC 4 years ago when she was 16.  I know exactly what you are feeling.  It's hard for friends to understand this when their kids don't have a chronic condition.  My daughter has had one flare up about 2 1/2 years ago which wasn't as bad as her first flare.  She has been on the same meds as your daughter.  She is currently on 4 Lialda per day.  She was on Azathioprine for almost 4 years but just stopped it last month because she was getting so sick.  She now needs her tonsils out on Tuesday because of 5 weeks of strep/tonsilitis.  Right now you'd never know she even had UC.  When she's in remission like she is now, she is feeling great (except for my daughter's tonsils).  She is currently seeing an IBD specialist who is great.  She watches her diet:  no sodas, no processed foods, no junk foods.  The IBD specialist said lots of UC patients get "bacteria overgrowth."  He wanted her to take a Lactulose Hydrogen Breath Test to see if she had it but she started taking probiotics called Ultimate Flora Critical Care 50 Billion which has really helped her.  She would have had to stop the probiotics to take that test and she was feeling good after that flare so she didn't take that test.  I know at 13 it is very hard to have her watch her diet when she goes out with friends.  It will get better.  Thank goodness for this forum.