How long does 'Crohn's' remain quiescent?

[Honey]

Hi there,
Having been hospitalized for three weeks with a lung infection, due to side effects of Remicade treatment, I had an anxious time deciding whether or not to continue treatment. I eventually decided I could not suffer that again and said 'No ' to Remicade infusions. My options used up, I wondered what next? My Consultant thought it was the feel good factor of Steroids that I seemed to be well. I am on Prednisolone , low dose, for another problem.
What a lovely surprise to find C.T. scan revealed a lot of healing even though F.C. test results were extremely high!! I do not need meds just now for Crohn's!! The disease is quiescent. How about that?
I am over the moon with joy!
Has anyone else inexplicably experienced Crohn's going quite?
:rosette1::wine::rosette1:

 

[Axelfl3333]

Don,t question it,just enjoy

 

[Orchid]

I'm sorry but if your FC is high you're not in remission. There could easily be damage in the intestinal walls that isn't showing up because you haven't had a colonoscopy with biopsies. This celebration is entirely premature until you get a colonoscopy to see how active the disease is in the most informative way possible. I know how frustrating CD is, I know you want to be better right now, but you need a colonoscopy. You also need to be on medication, otherwise your remission is going to be shorter and your flares more aggressive and damaging for your body, and by the time you "feel" a flare it's already done major damage to your gastric system because it has few nerves for detecting pain - you're feeling the echos of it outside the GI tract in most cases. There are many choices besides Remicade. You could try Humira or Cimzia or even Entyvio if you want to be on the cutting edge.

 

[nogutsnoglory]

Crohns going flare free has no timeline. It can be weeks, months or years there is really no telling or standard. I also agree with orchid that with FC test high you are not in remission. I would urge you to be on maintenance drugs of some sort other than Remicade. If you failed all existing maybe you can go on a clinical trial.

 

[Honey]

Hi there,
I have had a colonoscopy and biopsies too: all clear! I trust my good Consultant to work with me at making the right decision about meds. I reacted badly to many. I had a letter telling me this high F.C. test result has come down considerably, so I have to remain as I am. I do see him in a months time, so we shall see what is happening then. I do enjoy the day, as I have had a very rough time over the last three years! It is the only way, with God's help and a prayer, to enjoy your life. Best wishes to everyone for better health.

 

[nogutsnoglory]

I hope you continue to remain clear and your markers keep dropping please keep a close eye on it. Best of health.

 

[shamrock15]

I hope you remain clear as well. I don't think at this point I would willingly give up remicade. It brought me remission when nothing else in 25 years did. Congratulations, and enjoy!

 

[Johnnysmom]

My son's crohn's is quiescent according to his GI and has been that way for a year now but he is still on his meds. I have a feeling that if he went off of them things would start back up, it could take a while to cause symptoms but his good health is the result of his medication.

If you are not willing to go back on Remicade maybe you could talk to your GI about a med like 6mp or Imuran that can be taken in pill form to help keep your crohn's quiet?

 

[Honey]

Hi there,
I have used up all my options in meds because of side effects like pancreatitis, so therein lies the difficulty. I was very ill, on oxygen and a drip, as a result of Remicade so that is out! I shall see what suggestion my Consultant has on my next visit. Best wishes to you all and thank you for your input.