my daughter was just diagnosed

Hi all,

I've been reading past posts and it's helped a lot. My daughter, who will be 9 tomorrow, was just recently diagnosed with ulcerative colitis after an 11 day hospital stay and 6 weeks of issues. She has been on pentasa and a liquid form of a steroid for 2 weeks, and while it's helping a little, it's not enough. She still goes 4-5 times a day with horrible cramping, blood, and piecy/stringy stool. The Dr. said his next choice as far as medication goes for her would be remicade. If anyone could shed some light on their experience with remicade and/or ulcerative colitis in children I would so appreciate it. As a side note, we are also thinking of getting and 2nd opinion with an infectious disease Dr. just to make sure the GI practice didn't miss anything as far as bacteria goes...even though they did a ton of testing as well.

Any answers would be appreciated!

Thanks!

hi ljf01,

Unfortunately, I can't comment on Remicade with regards to children though I have had Remicade infusions myself in the past. Is your daughter taking a probiotic? If not, I would like to recommend using culterelle, which has helped many on this board regain formed stools.

ps.

If you don't mind me asking, has your daughter ever taken antibiotics?

Can you possibly create a signature with a list of meds, etc. that your daughter is on?

thx,

NBT

Just wanted to say hi! I was going to recommend the website someone already gave you. There are several other meds out there...has she tried Colazal, Asacol, any rectal meds? I hate she is having a hard time. Keep us posted.

Just throwing it out there...have you considered an antifungal diet? UC symptoms can have a fungal etiology. I see your daughter has taken antibiotics in her life, which can certainly be culprits of health issues, like UC. An antifungal lifestyle change was the only thing that helped me get well again after 8 years of UC. I am very sorry to hear that your daughter is suffering. Ditto the probiotics suggestion, especially if she is on antibiotics now.

I have not been on remicade because, at least according to my rheumatologist and gi, remicade incorporates mouse proteins. Although there is no significant threat posed by them in the short term, long term use has not been sufficiently studied. Therefore, both of these doctors recommend using remicade only for older patients who (let's be honest) will not be on it for as long and, even if they are, it is preferable that they have a better quality of life than quantity. I was first diagnosed with ulcerative colitis and ankylosing spondylitis about 6 years ago at age 18 and both doctors felt that I was simply too young to go on remicade when it is certainly feasible that I'd be on it for another 60+ years. Therefore, they put me on humira (which treats both AS and UC). Although the humira did wonders on the UC, it didn't work on the AS, so I ended up going on enbrel instead, which doesn't do anything for UC (therefore I'm now on something else that doesn't work for the UC, but no insurance company would pay for both enbrel and humira).

The point of my saying all this is that your daughter is too young to deal with UC, especially when it affects school, playing with friends, athletic events, etc., but remicade has the potential down the road to have some nasty side effects. Humira, on the other hand, is manufactured using wholly human proteins and synthetics. For all the bad press that the pharmaceutical companies get, the fact remains that they're in the business of making money, and that means coming up with new medicines to treat chronic diseases like UC. As my doctor always says, I've gotten these at the best time in history since there is no doubt that those money grubbers will do their best to make a dime and at the same time cure the disease.