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Back in June 2008 my son was diagnosed with UC now they believe it to be Crohns, they are saying it is undetermined.  He has been in and out of the hospital since.  He has not been in remission yet.  He has been on all kinds of different meds and nothing has worked.  He is currently on Humera and Predisone (5th time in a year and a half for the Pred)  He still is using the bathroom 7 to 10 times a day and has blood in his stools with liquidy stools.  The docs said that the Humera was the last meds they had available for him, but I am so confused and what the next step would be.  Has anyone else experienced this?  Any advice for a mom who has a child who doesn't tell you whats going on?

 Reply posted for MomofMouse.

Reply to Momof Mouse - Florastor has helped with pain and loose stools over the years for my daughter. SHe would take 2 twice a day and that has been a life saver. You can ask your dr. about it. Hope that helps. !

 Reply posted for jdp45.

He has tried everything...He is now in the hospital and on the last of meds they have to offer, but thanks

 Reply posted for melrosesun.

possible next steps depend upon whether your son had any initial improvement (aka response) on humira. and if he has taken remicade? and if he had any initial improvement on remicade?

 Reply posted for MominPoconos.

Your message is very encouraging.  Any tips/suggestions for getting thru the school days, or keeping up with homework when school is just too much.

I'm so proud of your daughter's attitude.

 Reply posted for melrosesun.

My daughter turned 13 in June.  She was diagnosed with UC when she was 11.  Except for the intial symptoms that led to her diagnosis, her first two years were really good.  At the time she was taking 6MP, later reduced to a 1/2 tablet.  In April everything changed.  She got "flu-like" and then tested positive for C-diff, and then the flair.  And what a flair it was.  She missed the 4th quarter of school, spent 8 days in the hospital and 2 - 3 months healing.  From April - August she was miserable.  During her hospital stay, she was taken off of 6MP and started on Humira.  As August ended she was back to her old self and ready for school to begin - but nervous just the same.

She had her 3 month follow up December 3 - her GI doc was pleased with her appearance, personality and her labs.  This was short lived.  By the 7th she couldnt complete a full day of school.  The 8th was her last day (hoping she will be back next week)  On the 10th she had a CT scan that showed thickening of the colon so back on Prednisone we go (She was on June - Sept)  She is still miserable with pain and just the running to the bathroom continually.  She is tired, but gets little sleep as she is often woke up by "the urge."

I truly sympathize with all you are going thru.  It is wonderful to have others who understand.  It (for me) is frustrating to see your child so miserable and not be able to "fix it."  Im sure many of you feel the same.

I wish you the best as we muddle thru this together and continue to pray for a cure - or at the very least a very long remission.

My questions are - 1) any suggestions for the gut pain?  2) any suggestions for managing school work - or school in general.

 

 Reply posted for melrosesun.

I just found your posting. It caught my eye since my dgt. was diagnosed when she was 13 yrs. old. I know what you are going through. Hang in there ! She is now in college and got through high school going on class trips and involved in many activites. She also graduated with honors. Crohn made many days a challeng ,but she was determined "not to let Crohns disease win " she'd say.I remember worryting about how she'd be able to finish middle school and high school . Now she is handling it in college.  I am telling you this so you know that your son will be OK too. It's just really hard to see that when you are going through those difficult flairs and periods. Prednisone stopped her acute flairs, but that is the last resort for our dgt. because of the side-effects that she gets from it. Florastor and VSL-3 have helped. Ask your son's doctor about them. Asacol did not work for our dgt. She, in fact, got worse on it. She is on  several nutritional supplements as well and has eliminated dairy since we found a correlation to pain and dairy.

Hope this helps you, but most of all, know that we are here for each other during good and bad times !

 Reply posted for melrosesun.

Thank you all for your advice and words.  Sara thank you for your suggestions of asacol but we have tried that as well and it didn't work either.  We end up going to the doctor and she is putting him on another shot weekly called Methotrexate on top of the Humira.  He has lot 7 pounds since he got out of the hospital at the end of September and she was concerned about that beings he has been on Prednisone since then.  He gets his last pill tomorrow.  So I guess all I can do is cross my fingers and wait.   

 Reply posted for melrosesun.

Well i can say this much i have had Crohn's ever since Oct. 1993 & i have never heard of "Humera" at all but i can give you a name of the pill that i take for my Crohn's it's called "ASACOL" i take (3 pills 3times a day ) & it works so mybe you can talk 2 the doctor about this pill & i hope that your son will get better cause i was like 11-12 when i found out that i had it & i really didn't wanna talk about it either cause i really didn't know about it at all ya i was young when i got it so i can feel how your son feels also i was on the PRED as well i was on it 1 week then the next week i was on it again it was like that for 2months in & out of school cause the week i was off it i was in the Hospital & so my mom talked 2 the Doc. & i got off it for good so i haven't taken the PRED since 1993 well i hope that i answered some of what you needed 2 know

From : Sara

 Reply posted for melrosesun.

I have an 11 year old girl with Crohns.  She too doesnt like to discuss day to day problems.  However, I dont sense that she is actually depressed, but just lacks the language to express her feelings.  Your son, no doubt is worried and unfortunately he hasnt had a chance to feel normal again yet. I have reassured her that Crohns isnt life threatening. She can still do anything she wants with her life, but it will make her life uncomfortable at times. That being said, she isnt comfortable discussing it with classmates and she doesnt know how to use humor yet to diffuse awkward moments. At this age, she doesnt want to be different.

I have to restrain myself from asking for a bathroom report each day.  I do stress that she let me know if there are any changes, etc. I know when things arent going well for her as she tends to cut back on food intake, especially on school days. She has been on Remicade 1 year.  It was a miracle drug for her, but now she gets allergic reactions and the effects are short lived. We dont know what the future holds so we deal with it one day at a time.  Eventually, I know she will need surgery...sigh. I hope things turn around soon for your son. This forum is helpful.

 Reply posted for dmstern8.

One more thing, My son also doesn't tell me everything and doesn't like to discuss his illness.  It's like pulling teeth to get information out of him.  I also believe he his depressed and I intend to discuss this issure with his doctor.  Just one more thing to consider when dealing with this illness.  Hang in there. Be strong.

Derek's mom

 Reply posted for melrosesun.

My 15 year old son diagnosed with IBD in sep. 09 is also considered undertminate.  He has already been in the hosp. 2 times so far this year and has missed many days of school due to illness and doct. appt. He to was not responding well to all the traditional meds. for IBD.  He just startred remicade yesterday and we hope this will put him in remission. I completely understand what your going through as a parent.  This forum has been helpful to discuss may things that I have been concerned about.  In the mean time,  we just have to love and be as supportive as neceassay to get through this.  Also, don't be affraid to ask for help if you need it. Good luck

Derek's mom