What should be done in addition to Remicade?

the easy answer would be get him healthy - not just uc healthy, but overall healthy - the problem is that what makes me healthy might make your son sicker than a dog - us oldies understand that reality - no one drug, supplement, diet, lifestyle, or smiley face is gonna work for everyone - that's what keeps this forum so busy - lot's of questions = a gazillion answers -

so what you are left with is a lot of trial and error - hopefully the remi will get him to a good place - I would just advise you to go slow on adding anything - it's not only cheaper, but much easier to determine what's working and what's not -

good luck - hope he feels better soon !

Hmm... I don't mean to hit you when you're down, but gosh, you know, your son might need to stay on Remicade indefinitely to get healthy. Calling it "poison" is a little... I don't know... rude? It has some adverse effects but nothing compared to prednisone, cyclosporine, etc. We have lots of members who have been in rock solid long lasting remissions just by having 5 mg/kg of Remicade every eight weeks. I kind of think it would make more sense to *celebrate* it, if it works, than tell your son that he's getting "poison." There is a very strong psychological aspect to IBD. It is hard for anyone and especially hard for a young person. My parents were very dismissive at first when I got sick and insisted it was because I wasn't eating right. It is hard enough to live through the disease and accept for yourself all of the drugs and treatments, without having the people closest to you judging you for taking drugs that are FDA approved and medically indicated.

I would not start any of these "adjunct" therapies yet. He's very ill and you'd be surprised how much harm some of these therapies can do. Yes they definitely help some people, but other people can be just as intolerant. You could be masking the effectiveness of other things you're trying or even of the Remicade itself. Unfortunately with UC not only are no therapies guaranteed to work, but many therapies can make some patients a LOT worse instead of better.

I have to agree with Liz. UC is incurable and lifelong. Getting into remission is the goal, but unless it's Pred that helped you, you're generally on that drug for life. That's why I thought it was a bit too to jump to such an extreme drug. And adding supplements, other than probiotics, is not wise. There is no reliable medical study that shows that any herbs or supplements or special diets help, and they can do much harm. Eliminating gluten or lactose is commonly recommended on this board - but if it helps, it's not making the UC better ... It just means you were probably sensitive or intolerant to those things before. Don't go crazy rushing into ideas by a bunch if people on a forum - there are lots of folks on here who can share what worked for them, but that's them. They aren't doctors, and these are questions you need to ask your medical team.

I STRONGLY agree with Liz here. I know that you and your son are very scared right now, but throwing every possible herbal supplement into the mix is honestly a really bad idea, especially so early on.

There are three general classes of drugs used to treat UC: topical anti-inflammatories, steroids, and non-steroidal immunosuppressants. Sometimes, other drugs are used, like antidepressants or antibiotics.

Remicade can seem scary, but it's honestly much less scary than steroids. Steroids have a lot of serious side effects which are very, very common. Remicade is an antibody that targets only one molecule in the body (and renders it ineffective); its side effects are serious but incredibly rare.

I wouldn't be walking and going to work, or living my life very much at all if it weren't for Remicade.

I don't think the doctor explained Remicade to you very well--you have 3 doses all within a short amount of time (second infusion after 2 weeks, third infusion after 4 more weeks), and then have doses regularly. Going off Remicade is not advised unless you have a bad reaction to it, if you develop resistance to it, or if it stops working (since your body will then develop antibodies against Remicade). You should not be trying to get your son off this drug unless it doesn't work or makes him sicker.

My advice? Get a good gastroenterologist (not the hospital doctors). Ask about mesalamines, which are anti-inflammatories with VERY few side effects (which are typically not very serious). Your son wouldn't stop taking Remicade--he'd be taking both of them (I'm taking Remicade along with 6MP, another immunosuppressant).

And STOP STOP STOP taking all those supplements. While I think that SOME of them work for SOME people, they can make people sicker and worsen symptoms. Slippery elm bark actually gave me diarrhea and stained a couple pairs of underwear before I caught on and stopped taking it.

If your son is this sick, he might take a while to improve, even on meds that are working. Be patient.

Pluot: I'm really sorry I referred to it as poison. I would never do so in front of him. Really regret saying that!

Everyone: My understanding is that our medical team decided to go "top down" and start with Remicade because his disease is so severe and extended the entire length of his colon. When the Drs first told us, we'd never heard of Remicade or anything else. One of the top colorectal surgeons in our city told us Remicade was the only way to go if we wanted son's colon to be saved.

My after-the-fact research has me kinda scared, but it's nothing compared to the terror of watching him go into shock as we returned to the hospital...I didn't mean to sound ungrateful. Going thru the phase of "well, okay, he's got this awful disease, but we'll find a way to manage that doesn't hurt him..." you know, moms want to fix things.

ScienceGirl, After reading many posts I am so grateful that he hasn't had prednisone & hope it stays that way.

I am going to discontinue the slippery elm bark for the time being. I read about it my first day on the forum...& realize now that was premature...every poster has a different set of remedies, and they're all valuable, but not for everyone. Will continue probiotics I think. He's had no other supplements.

His Friday blood work showed v. low potassium, so he's taking prescription potassium until it's back up.
He's getting lots of protein, and I've pulled dairy and gluten. (Deeply distressed to be cut off from mashed potatoes and corn...) He's enjoying lactose-free milk & ice cream. The kid loves butter, so I've turned to a non-dairy replacement. He doesn't even know about the replacements yet, or he would've made up his mind he didn't like them in advance. Time for that later on.

Bananagirl, he's getting two protein shakes a day w/ probiotics. It takes him about three hours to get one down, but they're going in. Kefir included. I'd love to do saurkraut, etc but there's no way...he won't even eat a dill pickle...hell will freeze over before any kimchi passes those lips! The smell alone would finish him off...

When my nephew was diagnosed w/ Crohn's (two years ago I think) he had already lost 40 pounds and been ill for months. He lives in a far-away state, so I was following his situation long-distance. He started w/ Prednisone but things went berserk every time he started tapering. This went on for a very long time. Eventually he went on Humira, which failed. Last summer he had a bowel resection, which gave him enormous relief. Still doing well.

Liz, we are very upbeat with him and so careful not to express doubt or dismay, only sympathy (this really stinks, etc...) Never dismissive or scary...this thing hit us like a bolt of lightning, the boy's been a freight train until now - but we're keeping the shock and fear to ourselves.

Compared to his illness last week, he is improving, and Remicade gets the credit. We're down to two or three pretty painful trips to the bathroom each day, with semi-loose stools. Urgency but then takes forever to go. Still has too much nausea, and seized w/ random severe abdominal pain multiple times each day. But no blood, no fever, and his color is better.

I will be patient!

Low potassium is due to diarrhea, it's not a dietary issue. When his flare gets under control the potassium issues will abate on their own. Good he's supplementing for now.

Honestly that is an AWESOME response to a single Remicade infusion. I think you have a lot of reason to be upbeat right now. I really don't believe in doing these dietary mods right now -- for one thing the stuff in the replacements could be more irritating than the original dairy etc. For example, most of those lactose free ice creams contain carrageenan, which is known to cause colitis in rats (at very high doses) and suspected to cause GI issues in humans at normal dietary levels. It's a darned if you do darned if you don't situation so, in my opinion, I would let him eat what is comforting and what he has an appetite for.

Top down is a big thing for peds right now, I guess it's a matter of opinion as to whether your son is truly a pediatric patient anymore but it definitely makes sense to me and if I could have hopped straight to Remicade instead of prednisone I would have been happy!

Really happy to hear your response, sorry for my strong words but I think we're on the same page :)

I only wish Remicade had been available to me when I was first diagnosed, but it hadn't yet been approved for UC and my insurance wouldn't cover it. As it was, I suffered through over five years of severe flaring with none of the medications helping much, either individually or in combinations.

The most common reactions to Remi are intolerances or allergic reactions which occur during the infusion and are easily managed with a quick dose of IV steroids. The adverse effect most people freak out about is lymphoma, but this occurs in a miniscule percentage of people, and is usually in people taking both Remi and another immunosuppressant such as azathioprine or 6-MP.

You have been getting pretty good advice, I know. We all care here, but have such different experiences. Remicade gave my daughter great flare free years, where no food caused any reaction. When it stopped, all bets were off, and I too was seeking the best Slippery Elm Bark. Western medicine has an upside. Hang in there till the Remi does its business. Keep the supplements limited, then investigate diet and other possible maintenance drugs. Our data is in flux. You are a great mom!

Rabbit, your post reminded me of this! http://xkcd.com/1252/

I'm not sure that pulling carbs right now is the best thing for your son, though. When I was very, very sick, all I could really eat were low residue carbohydrates. I ate a lot of white rice, white bread, and white pasta.

The key thing during such a bad flare is that food can make a flare WORSE, but avoiding certain foods often doesn't make you any better. So if I'm flaring, I won't eat lettuce because it'll tear up my colon. But avoiding lettuce won't make my flare end. So foods that won't tear up his colon are good, and low residue carbs are great for that.

I'm glad your son is doing better.

As you mentioned, the "top-down" approach is becoming fairly common for peds UCers who present with very severe UC. So despite what some other people are saying (i.e., that the docs should have tried other meds first), I think that your son's doctor recommended a good strategy. Hopefully the Remicade will get him into a solid remission and then he'll be able to go off of it an maintain on some other drug. Lonie used Remicade for a few years and is now maintaining well on mesalamine.

HillHunter, I will reup my "good jobs" & thanks for the reminder. BTW, you are doing a good job, too!

hey b'smom - do a forum search for ldn insofla

you'll find a ton of stuff -