Med hopping

I feel like my doctor isn't giving me enough time on one med before moving me to another. The only med I took for a decent length of time (3 months) was prednisone and that didn't work, go figure.

I've done only 3 remicade infusions, the last one being a higher dose because I didn't see improvement with the first two. I noticed SOME improvement after the third, but not enough, but am I right in thinking its something I need to let build up over several more transfusions? The nurse called and said he wants me to stop remicade and start 6mp. I told her I felt I really needed to give it more time. They will probably call me back today.

I'm also taking asacol 1600mg 3x a day, and hydrocortisone enemas nightly (he keeps trying to pull me off of these too early too....I fought to stay on them longer).

Is this weird? Is he not being patient enough?

Also, the thing I've had the most success with so far is drinking nothing but elemental formula. No other food. I keep falling off the wagon though. It's soooo hard to get this stuff in me! It doesn't taste good and the only way I can drink it is to flavor it, which is putting stuff in my body my GI system probably doesn't like. Would it be terribly unreasonable to ask for a temporary NG tube to give me a chance to really give this elemental formula a fair shake? I'm familiar with tubes as my daughter has a g tube. To ME an NG seems like no big deal, but I know other people consider it fairly drastic, and wouldn't want something shoved in their nose! But to me it seems like it would be heaven not having to actually taste the formula.

I'm still waiting on a reply from the doctor. And I told them I wanted an NG tube. The lady who I talked to first (receptionist I guess) seemed to think it was a perfectly reasonable request when I told her how much I was struggling. When the nurse called me back she was like "well they generally don't do NG tubes because it's temporary". Uhhhh....what is "temporary"? The NG tube? Yeah that's why I want it! Or does she mean my symptoms? Because I've been at this for a year and a half with no end in sight. I kind of feel like an idiot right now. But I don't know what else to do. The only thing that doesn't bother me is so completely unpleasant to drink I'd rather just lay here in bed all day, every day. And I have kids. I need to get up and DO stuff.

What dose of pred did you start at? I agree with you that you need to give a bit more time with remicade. I think with pred, if you don't see results in 3 months, you may need a higher starting dose or perhaps you're not going to respond to that treatment. Was this your first course of pred?

Do you know where your disease is active? pancolitis?
Have you tried other 5ASAs besides Asacol? Some do better on others.
Have you tried any antibiotics? Stool tests?

It does seem rushed but if you're at the point of needing an NG tube, you're not far from hospitalization and your GI probably just doesn't want you to have to go that route. Did you have the test to see whether you've built up antibodies to Remicade?

I am on 6mp and I've done really well with it. Maybe it will work better for you. Many people on remicade use it in conjunction with 6mp because it can prevent antibodies.

notsosicklygirl said...

It does seem rushed but if you're at the point of needing an NG tube, you're not far from hospitalization and your GI probably just doesn't want you to have to go that route.

To be fair, I don't "need" an NG tube. I can stay hydrated fine. I have extra weight from my prednisone treatment. I'm not going to starve. But I can't live like this. I can barely get out of bed most days. I can't function on so few calories. Because that's what my doctor wanted me to do....just drink chicken broth or whatever...that's fine and all, but it's not a good long-term option.

I WANT the NG tube because quite frankly, I don't see it as a big deal, it's not permanent, I can place it myself, and if it makes my quality of life better then that's GOOD. I personally don't see any downsides or risks to using one until I'm good and in remission and can start VERY slowly introducing single foods back into my diet.

it seems weird for your doctor to up your remicade dose on the third one. the first three are considered loading doses anyways. i don't understand why he'd up it and stop it right away. i know some people do better with 6mp and remicade. maybe you could try the combination?

i know my doctors were begging me to get TPN for months. i'm sure they'd still wanna do it to me now. i keep rejecting it because i eat so much and prefer getting food naturally.

For the record, I stopped eating hours ago because I could feel everything heading south (haha) and I've been crazy thirsty and so I've been drinking a lot of water, but not peeing and now I'm bloated as heck. I really hate that everyone jumps to diet first thing. I feel like I've been through the wringer and nothing I do matters.

My abdomen feels tight and the cramping comes and goes. Reminds me a lot of early labor.

I didn't have medical insurance when I first started having symptoms so the first thing I tried was diet stuff. I think gluten free was the first thing I tried. I was already eating a vegan diet at the time, so no dairy. I also knew enough not to eat nuts and seeds and stuff. My sister has u/c so I was already suspecting it. I'd watched her try diet change after diet change, be hospitalized for a month at a time, do all sorts of meds...she finally found the right combo. I'd like to think most people here would "get" that there's no one size fits all solution. I'm a little disheartened to see that the tone of the boards is "if you haven't tried this first you are destroying your body". Especially when they don't even know what I have and haven't tried! LOL I will get over it I'm sure and eventually people here will recognize me as something other than a sheeple that does everything the doctor says without thinking alternatively. In the meantime, I'm going to get my hands on an NG tube one way or another! I have enough nurse friends...I'll figure it out.