Introducing myself...how long did it take for Remicade to work for you?

Hello everyone. I have been lurking here for a while and thought I'd come out into the open as I keep thinking of things I'd like to ask the kind people here. I am so impressed with the wealth of info, but also overwhelmed by all the divergence of opinion and options...right now just trying to absorb and filter it all (and now I sound like one big colon).

My daughter was diagnosed with UC almost a year ago. After a few months of steadily increasing frequency, diarrhea, blood in stool and high sed rates she had a colonscopy. They did a number of polyp excisions and biopsies and apparently one place was so ulcerated that they thought she had cancer, which, thankfully, they didn't tell us until after they had run exhaustive tests and determined that she didn't. We are at an excellent research hospital and I am very confident in the level of mainstream medical care we're getting.

She's now almost 16. She has an amazing attitude and has dealt with all this so beautifully. When she was first dx I was feeling pretty desperate and was determined to not totally submit to traditional medicine, but as she continued to flare I submitted pretty quick! I would do anything to prevent her having an accident at school (so far so good) and to reduce her stress level about this disease, and because of that we have tried one drug after the other. However, she has failed one after the other and is now on Remicade, which so far is not working, and we are getting a lot of pressure to do surgery.

I will post about the surgery question separately; I just wanted to introduce myself for now, and to ask one discrete question (I am trying to get info in small bites...jeez the food analogies). My daughter has had 2 Remicade infusions and has not had a lot of response yet. Certainly not full remission although it's hard to tell since she's on so many drugs. After the second one she was supposed to continue tapering her pred but started having trouble at 10 mg, and so went back up to 15. She's having her third infusion next week (the first 2 were 2 weeks apart, and it's now been a month) and the doc is upping her dose. Has it taken this long for Remi to work for anyone else?

I really hate this toxic combo she's on but we keep hoping for a silver bullet, or, at this point, like, a bronze or even tin one.

Thanks so much and will post more questions soon.

But I have no idea what the necessary diet modifications are! Of course I got the line from her doctors that diet was irrelevant. And of course I don't believe that. But there are so many conflicting diets out there and conflicting opinions and people who swear by one thing or another and Then just as many to swear by the opposite we are definitely investigating supplements and I have things to try. What diet changes have worked for you?

Hi bearmama, so sorry your daughter is going through this. I have no advice on the Remicade. Sorry. As for diet I'm sure you have seen on this forum many discussions about different diets SCD, Paleo etc. Some people swear by them, and for some they have no effect. I myself could never be diligent enough to restrict myself that much. When I am flaring I cut out fresh fruits and veggies. I greatly limit dairy (which isn't hard for me I don't do alot of dairy) and nothing fried or spicy. Just doing that alone helps alot.

Another thing would be to add in a fiber supplement as it helps to bulk up the stool. However, add it in slowly. Too much too quickly and I'm sure you know the effect it can have. I don't use a fiber supplement but normally I do get enough fiber. If I was flaring I would add it. A good probiotic would also be a good thing to add.

Hope this helps a little. :)