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