Crohn's Patients--how often/long do you flare?

[HungerPains]

Hello all,

New to the forum, although I often refer to it during my disease-inspired Google searches.

My question for you is: how often do you generally flare, and when you do, how long does it last? I recently read that many patients experience flare symptoms at least once a week, but with my own disease the pattern seems different. I will gradually improve for weeks before entering a downward spiral of pain, diarrhea, and fatigue. This spiral will last weeks before I begin to recover, only to eventually plunge downward again.

I know that this isn't the road to a sustainable remission, so I wonder: does anyone has any tips for shortening the "flare cycle"? I've had no surgeries (I know I've been lucky, so far) and am on Imuran and Pentasa. I try to avoid "trigger" foods (by now including pretty much all raw fruits and vegetables--a major dietary problem at this point). Could I shorten the flares with more dramatic dietary changes? What about over the counter medicines? I recently starting taking Imodium for diarrhea, and while it really did cut down on the frequency of my BMs, they're still watery and foul when they occur; I also know you're not supposed to use Imodium daily, just for emergencies.

Thanks for reading, and in advance for your advice!

 

[Manzyb]

Welcome to the forum!!

i've never quite been into remission, but I do cycle into getting worse and feeling better. it seems to me to be every couple of weeks i have a really terrible time, and then it gets better where i still have trouble, but not nearly as bad.

I know some people go into remission for a very long time and don't have too many problems. Everyone's disease really is so much different from the others.

With me, i dont' really have trigger foods. Some days i can eat, say mashed potatoes, and then the next day they may not sit well at all with me.

 

[Keepingfaith]

I've never been in a true 'remission'. The only 'remission' I had was spontaneous, lasted a few months & happened out of left field.

My flare gets worse EVERY February. It never fails. My flare also gets more symptomatic whenever seasons change.

A lot of people get a short lived Remission from diet alone but in order to sustain remission your best bet is to exercise, eat right(no fatty foods, limit sugar, cut back on the grains) & get on a good maintenance drug.

As for the diarrhea, I take liquid Lomotil(It's called Lomotil because it literrally stands for 'slow motility') and it works wonders! Whenever I try to hang out with friends I sneak it in my purse and just take a swig before & after meals. It works :dance: Immodium makes me very nauseated & upsets my upper GI Crohn's.

I will say, that whenever my GI hospitalizes me from time to time, to get my medications/diet straightened out, my flare is usually moderate(as opposed to severe) for at least 2 months. I guess the rest & IV fluids/meds realy help. Especially with malabsorption.

Take care! Try to rest up as much as you can & eat enough calories! Your body is presently trying to keep you alive & attack you at the same time.
We are all in this together :hang:

 

[Raleigh]

The nature of your flares are exactly like mine. I'm not under any treatment, so it's just a constant up and down cycle for me. Unfortunately, I don't have any advice that I can give you, but I just wanted to let you know that you're not alone in what you're going through. I hope you're able to get things under control!

Brian

 

[Dawny]

morning all ,this is my first time on a forum ,i have been expieriencing excessive saliva ,with cramps and a terrible feeling of sickness ,can anyone help with a poss way to eliviate the symptoms x:dance:

 

[randy.stand]

I was diagnosed 8 years ago and was put on Azathioprine. This put me into remission and it lasted up until April just gone. I flared and was immediately put on Pred, but finished these last Sunday and already seem to have fallen back into flare mode. Really sucks after being in remission for so long. Am still on the Aza but its not working well clearly now. And my Consultant and Nurse have also been an absolute disgrace this past week, cannot get any sense out of them, ignoring a patient's symptoms for a week is horrendous practice and if a Nurse did that on a ward to a patient they'd be struck off. What's the difference?