Please help - how long til I can expect remission?

I was not experiencing extreme UC symptoms, though I did think I was potentially flaring. I've been under a great deal of stress lately (I've gone into this, would be glad to do so again if anyone really wants to read it) and that tends to have brought upon flares in the past for me.

I was diagnosed with mild to moderate proctosigmoiditis 9 days ago. My treatment was changed from Asacol HD (4.8g/day) Librax (1-3 daily) and Canasa (nightly) to replace the Canasa with Rowasa enemas administered in the morning and night for a week, and then nightly for 3 weeks. Shortly after undergoing this treatment, I started seeing a reduction in symptoms. Instead of 4-6 BMs, I was having 2-3. I no longer had mucous, though my stools were still somewhat loose which I assumed as due to voiding the enema contents. I had no trouble retaining the enemas for 2-3 hours at minimum.

This week, I stopped taking the Rowasa in the AM starting yesterday. Things have gone back to where they were prior to last week. I have had 4-6 BMs, some that were loose and mucousy and today I noticed blood with the last one.

I'll acknowledge that I haven't been careful with what I eat. Over the past few days, I've eaten more "complicated" foods - fried, seasoned, etc. just to test my limits, I guess. I was hoping that things would stay normal as a sign that the new treatment was working.

My question is: when can I go back to "normal?" When can I recognize myself as symptom free and
know I'm in remission?

I've seriously got so much going on in my life right now, the stress part of this is going to be difficult to manage. I also get even more anxious and nervous when I see blood and experience UC symptoms, so it's kind of a vicious cycle. Any input or advice would be appreciated. I'm having a very tough time and don't want the UC to make it worse.

Controlling my stress has always been a big factor in getting flares under control.

I eliminated dairy and started taking the max dose of Asacol HD like 2 flares ago. The last one was solved by Budesonide/Canasa, eventually just Canasa.

I don't know how to relax right now with all I've got going on. I wish I knew how. I have a ton of Klonopin prescribed to me by a psychiatrist but I am concerned about forming a habit so I try to keep it to a minimum and only use it for sleep.

I hear you about the stress! Me too! Going home for the holidays and it can really freak me out! You just gotta try to step back and remember that you are more important than the stressor! Easier said than done.

Why not try budesonide and canasa again, it is really getting my flare settled. Knock wood, crossed fingers!

Good luck

That does suck! If you get dental work done you should before steriod treatment I think. It is so freaking overwhelming to keep it all straight so just try to relax and write stuff down and then make sure you try to take your mind off the drama at some point during each day!!!

garylouisville said...
They're going to want to put you on antibiotics for the tooth extraction.

does this mean my flare will be exacerbated?

I discussed the fact that I have IBD with the oral surgeon and he didn't mention antibiotics. he just told me that I'd likely have to set aside a couple of days to recover.

So to be clear: I need to try and relax about my health...

...but I'm getting my teeth ripped out of my head, might experience a great deal of pain, might need to go on antibiotics which might make me flare worse, might ruin my lower jaw nerves and also might wreck my sinuses...

Got it. That should be easy.

iPoop said...
That's the million dollar question "when will I be in remission". Nobody knows. It could be days, weeks, months or years, and every flareup is different.

It took me 2.5 years to achieve my 1st remission. Still in it.

Well, I guess my question is: how do you know that you're in remission? What tells you that you're fully asymptomatic?

sfc425 said...
Well, I guess my question is: how do you know that you're in remission? What tells you that you're fully asymptomatic?

To paraphrase the movie the matrix:

I wanna tell you a little secret, being in remission is just like being in love. No one needs to tell you you are in love/remission, you just know it, through and through. You can try but you cannot force yourself to be in love/remission, rather it just happens when you least expect it. You don't realize you are in love/remission until a while after it has happened.

Remission is an absence of uc symptoms: 1-2 normal bms a day without any urgency.

gosh sfc425, please don't be too hard on yourself. for me, stress doesn't bring on flares, flares bring on stress. when our bodies are kicking our butts, it can be very difficult to be positive and productive.

I try to treat flares like the weather. on the days the sun is shining, I'm outside enjoying as much of it as I can. inside projects and chores get rescheduled to night time and cloudy/rainy/cold/windy days. I have enough on my to do list that I can stay busy (which keeps me mentally healthy) good weather or crappy.

I treat my uc the same way. I do what I can, depending on how I feel. some days it's take it easy time, others it's non stop activity. but I always have something to do, regardless of how I feel. that puts me more in control than my illness.

I also try not to focus on defining remission, but more on what I'm able to do.

don't get me wrong tho. there are still days that I get p.o.'d at having uc. I thinks it's unavoidable. I just try to limit those times, accepting again that they are a part of the whole process, but not the driving force.

oh, and I always try to laugh at something every day - even if it's myself that I laugh at !

good luck with your upcoming bumps in the road.