Community Forum

Have a question, or want to share your own tips and experiences? Join the discussion in the community forum. You must be registered to participate. Our forums are moderated by Crohn's & Colitis Foundation staff to facilitate a safe environment.

Daughter newly diagnosed


Mon, January 04, 2010 1:00 AM

My 10 yo daughter just had an acute, severe initial flare that the colonoscopy revealed was pancolitis.  She had bloody stools to the point of needing a unit of blood.  No prior symptoms, and none now while she is on the Asacol, prednisone taper, calcium gluconate.  She has been on a low fiber diet that is now causing constipation.  Since eating fiber is not a option, and she is already drinking 32 oz of water per day plus 8 oz of apple juice, what do we do next?  Also, I said that she wasn't having symptoms while on the meds, but she is tapering down on the prednisone 5mg per week and we are in the beginning of the third week and I've noticed an increase in the mucus (I never even noticed that prior to or during the initial flare) and a frank blood spot on the stool pellets (just like what I did see early this fall, but I thought it was due to a fissure).  I have a sinking feeling that tapering the Prednisone is causing this and that we could end up with a full blown flare like the last one.  We see the GI soon and I will tell him all of this, but I just kind of need people who have walked through this to help me out--with the constipation, any supplements you've found useful, and also is you've had experience with JuicePlus.  Thanks.  

FPO gorrellgirl
Joined Jan 4, 2010

Wed, January 13, 2010 12:34 AM

 Reply posted for gorrellgirl.

My 11 y.o. daughter has Crohns pancolitis with a similar symptom/med course. The massive doses of steroids (60mg/day) brought her into remission, but 2 weeks after weaning off she was in a major flare. The 6 MP levels never got to therapeutic and she was getting liver toxic. Ultimately, six months after diagnosis, she was started on Remicade. It worked wonderfully for her, but after 14 months the effects arent as beneficial. The remission period has helped her get a grip on this disease emotionally.  She will need to be strong for her uncertain future. 

Word to the wise: after your daughter gets stablilized, resist the temptation to ask daily about her BMs etc. It is easy as a Mom to get caught up in this uncomfortable disease.  My goal is to get my daughter to the emotional level as some of the awesome young adults that post comments on this site. 

 

FPO ibdamom
Joined Jul 4, 2008

Mon, January 04, 2010 9:58 PM

 Reply posted for gorrellgirl.

My son has a low 2in long  rectal stricture- the diameter of a straw. Miralax has been a life saver.

FPO wildcat
Joined Jul 6, 2009

Mon, January 04, 2010 7:53 PM

 Reply posted for gorrellgirl.

My daughter is 6 and like yours, she swung from one extreme to the other.  We had to start Miralax (how ironic right?) but she did fine on that and it did relieve the constipation without getting things too loose.  We only have to use it periodically now.  When mine started bleeding during the taper, we kept a calendar and a count and it was really helpful to see how much blood we were actually seeing.  You are probably already doing that but thought I'd mention it because it's difficult for me to rationally track when I start to irrationally worry .  I see the mucus now periodically but wonder if it is because I know to look for it??? 

Wishing you all the best....

Claire's Mom

FPO azmom
Joined Jul 20, 2009

Mon, January 04, 2010 1:00 AM

 Reply posted for gorrellgirl.

I'd first check with the doc about the spot bleeding just to be on the safe side. It's hard to know if it's the taper or she's straining to go and may have bleeding from that. IT's not necessary to have a BM everyday so if she's comfortable and goes every few days that's ok. If she's not comfortable ask the doc about a stool softener (not a laxative). 


Please ask first as the doc knows what's going on with her intestine.

Apple juice doesn't agree with me so I can't drink it but applesauce will make me go, and it doesn't take all that much. Only the "regular" helps not the low sugar.

FPO titan1
Joined Sep 1, 2008

Related Topics

Trying to support my husb...
Author Image jessers
Joined Mar 1, 2022

Hi, My husband is 46 and was diagnosed in 2019 ....

read more

Legal system
Author Image Kimdanon1
Joined Apr 20, 2024

My son has Crohn's and is currently in jail. T....

read more