Flares and pain management

Just wanted some clarification. Sorry I'm posting like crazy...haven't seen my GI yet, and I'm a proactive know everything now kind of girl.

I see people mentioning having flares for months or years and I think of where I am right now...in bed, in pain, exhausted. So is everyone having these extended flares in constant pain and unable to function? Or is a flare also just having a mild issue, like occasional diarrhea or something? Is your flare always the same? Should I always expect this is how I will be when flaring, or will it be different each time? Would love to be mentally prepared.

For those with pain, do you have any tricks for managing it enough to get through? Surely we are not all becoming narcotic dependent right? Do you eventually adjust? Any supplements or herbs that help with that side of things?

Thanks guys!

My husband has crohn's disease. He is currently on Remicade 10mg/kg every 8 weeks. At the beginning he was very, very sick. Six weeks in the hospital, and lost over 50 lbs - came home too weak to shower by himself. Since then, he's recovered. He's back to normal. He's had a few bumps, but never as bad as the first one. It is now going on 5 years (knock on wood).

I think the hard part of IBD is actually getting diagnosed - and the whole time you are being diagnosed, the disease is gaining momentum and damaging your body. Once you are actually diagnosed, the next hard part is finding a treatment regimen that will put your disease into remission. I believe for the vast majority of people, this does happen. Thankfully, it did for my husband as well. He's been on remicade now at varying doses for over 5 years, and I attribute his good health to remicade. He lives a normal life, and is not in pain, and is not constantly in flare. He has had a couple of flares, but they were milder because he was on remicade, and a quick taper of prednisone, put him back into remission.

So, I don't think you should set your expectation to be always in a flare, and always in some level of pain. I think you should find a way to get to remission through medication. If you are having symptoms, and you can see signs of disease in tests, then, you are not in remission, and you need to keep working with your doctor to find the right medications to put you into remission. The goal of treatment is to get to a sustained remission (ie. get you into remission and keep you there as long as possible). During remission, you should have very minimal symptoms (if any), and you should be able to eat mostly normally.

So, hang in there, and push your doctors to get you into remission. I read from another post that you are on Lialda - which isn't a strong enough medication to put you into remission, especially with fistulas. I think you need to be on Remicade (which is also quite expensive - if your insurance doesn't cover enough of it, you should look into the remistart program funded by Remicade).

I hope you get into remission soon. Hang in there.

PV

If you have a fistula, then Remicade is the drug of choice for healing it. Throwing antibiotics at it does nothing but upset the already upset GI tract, IMO. Seeing your GI is the first step and finding a treatment plan that works for you as PV said. Everyone's disease is different and what works for one doesn't for another.

If your diarrhea and pain has gotten worse since starting the Lialda, then you might want to suspect it as the culprit. Diarrhea and abdominal pain are known side effects of Lialda. My mother has ulcerative colitis and takes Lialda. If she takes the recommended dose, her diarrhea is worse. At half the dose it works.

I can't recall where your Crohn's is located but if it sin't in the colon then I am not sure it is the proper medication for you.

Pv i dont understand what you mean by just pushing your doctor that you want to be in remmission? it hasn't really worked out that way for me. i think you say that because your hubs doctor prescribed remicade and it worked and he didn't have to worry after that, for me remission has been a strugle and I haven't reached it yet after 3 years. it isn't that easy for some people is all i'm saying.