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when do you go to your GI?

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Crohn's Disease
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Posted 3/23/2013 2:45 PM (GMT 0)
I've been on remicade for a couple of years - and it has been miraculous - it's like I never had crohns! I just had an infusion a week ago - the last infusion I started feeling kind of "icky" during the infusion and then felt that way for a couple days afterward (fatigued, crampy, loss of appetite). I picked up after a couple days and felt better. I don't usually feel this way with remicade.
Also, over the last couple of months I feel like my crohns is doing the "slow creep" of activating again - I have more moments of noticeable burning in my intestines, started taking antacid every day, feeling slightly nauseous in the mornings, more tired. It is nothing (thankfully) too overwhelming or painful, and my BM's are not too bad - but I am feeling fearful that remicade isn't working as well anymore. I usually only see my GI once a year because I've been doing so well - I'm not due to go back until next December. This could the beginning of a flare, or hopefully just a blip! How often do you go to your GI? At this point I'm thinking there is not much point until I see how this goes? I don't think there is anything he could do for me other than offer prednisone and I'm not sick enough to be willing to take it! I'm thinking I will leave it and see what comes...thoughts? I'm thinking I will see how the next infusion/blood work goes in about 7 weeks...?
Posted 3/23/2013 3:21 PM (GMT 0)
My husband normally calls his doctor after 3 days or so of abnormal feeling/output. He is also on remicade, and 100% of the time when he reports feeling this way, there is something going on - c-diff or crohns flare. His GI after initially brushing him off saying it could be IBS or lactose intolerance, now understands that if he says something is wrong, it is true.

Also, my husband's diet has very little variation - we eat out at very few places, and even there he has just a few safe dishes he sticks to. So, if he says something is off, it is probably not because he ate something that didn't agree with him.

I think it is best to treat a flare up early than try to control it after it gets bad. You can get your blood tested for inflammation markers, and maybe get a calprotectin test to see if there is any inflammation. If there is, treat it right away to get the shortest and lowest dose of steroids to control the flare up.

Then, it maybe time to talk to your doc to see if your remicade dose needs to be increased to prevent future flare ups. Or maybe add another med like imuran to the mix, but I think it is safer to stick to mono therapy with remicade.

That's what we've done in the past. I hope it isn't a flare up, but if it is, that you quickly nip it n the bud.

PV
Posted 3/23/2013 4:17 PM (GMT 0)
Agree w PV. I usually try to fix things on my own for 3 or 5 days when I lose control and all precautionary measures fail, I see my GI. I think you should call your doctor and tell him/her about the symptoms. May be he has got a solution that you did not think of and which may turn out not to be pred.
Hope you feel better soon :)
Posted 3/23/2013 10:06 PM (GMT 0)
It seems like only seeing your GI once a year while on remicade is not very often. My doc sees me every 6 months when I am in remission and doing well, and much more often if I am having problems. Right now, I'm on a three month leash, as my constipation is bad and we are trying different things. It is a very hard question to know exactly when to call the GI. I have bad IBS in addition to my Crohn's and if I called him every time I had a bad three day period, I would drive us both crazy! Maybe you should call and say you are feeling a little worse and want the next available appointment, which may not be for a month, but you will then have something set up. I hope you feel better soon.
Posted 3/23/2013 11:29 PM (GMT 0)
I see mine every 6 months when I am doing well and more often if I am not. After my last scare I saw his associate immediately following discharge from hospital and then 8 weeks later. He said come back in 6 months unless the test he had run yesterday shows a problem and then he will call.

I personally would see how it plays out for a couple more days and then if you still have that nagging feeling something isn't correct, call and get an appointment.
Posted 3/24/2013 2:32 AM (GMT 0)
If I am really sick I can usually get in, in 1-2 weeks if symptoms are serious. If I am normal I go every 6 months, if I am ify they have me in every 3 months. For regular check up when all is well it is usually the GI nurse I see.

Post Edited (sooper) : 3/23/2013 8:35:50 PM (GMT-6)

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