Do you think it's possible to be symptom free?

[bcv513]

My doctor keeps telling me that she considers remission to be completely symptom free. I just can't imagine that! The combination of Pentasa and budesonide has me feeling MUCH better than I was. I'm going once or twice a day, instead of six or seven. I still have pain sometimes, but not nearly as bad. The urgency is gone. I'm very happy with where I am now, but I have a feeling the doc will say it's not enough. Is anyone truly symptom free?

[Deleted]

I'd love to be symptom free, but I'd also be really happy to have manageable symptoms with a combo of diet and meds. I just want to continue to live a normal life.

My biggest fear is long-term total parenteral nutrition... or ending up with a colostomy bag. Many people can rock it - I think that would be the point where my spirit breaks. It also would be really, really awesome if I could one day carry a healthy pregnancy to term. :-)

Symptoms aren't a big deal to me. Even when the pain was at its worst (multiple obstructions, blood in stool, chronic anemia from blood loss due to intestinal ulcerations) I lived a kickass life. It's the potential complications or disease progression that terrify me.

[aimeedyan]

Yes, it is completely possible - and I have lived it a few times!

2.5 years while on Remicade - 100% symptom free
2 years on Humira - 100% symptom free

MIRACLE DRUGS.

However...after a resection, I'm not as confident that that's a possibility since I'm missing stuff that makes the digestive system work normally. But maybe they don't consider that a symptom as much as a lasting effect of a surgery?

[Deleted]

Mar 18, 2013 19:38:34 GMT -5 aimeedyan said:

However...after a resection, I'm not as confident that that's a possibility since I'm missing stuff that makes the digestive system work normally. But maybe they don't consider that a symptom as much as a lasting effect of a surgery?

Interesting - my digestion/BMs have never been this regular in my life! 

Before my resection (45 cm) I was constantly constipated and never had regular BMs. I've had a regular BM every morning for 28 out of 30 days since surgery. I know I'll have a harder time absorbing nutrients but I was deficient in many nutrients before surgery bc of all the inflammation and damaged tissue. (Low k, D, HDL, iron, B, Ca at baseline.)

[aimeedyan]

Mar 18, 2013 20:28:53 GMT -5 tacom said:

Mar 18, 2013 19:38:34 GMT -5 aimeedyan said:

However...after a resection, I'm not as confident that that's a possibility since I'm missing stuff that makes the digestive system work normally. But maybe they don't consider that a symptom as much as a lasting effect of a surgery?

Interesting - my digestion/BMs have never been this regular in my life! 

Before my resection (45 cm) I was constantly constipated and never had regular BMs. I've had a regular BM every morning for 28 out of 30 days since surgery. I know I'll have a harder time absorbing nutrients but I was deficient in many nutrients before surgery bc of all the inflammation and damaged tissue. (Low k, D, HDL, iron, B, Ca at baseline.)

Did you lose your ileocecal valve? That valve keeps things going and without it, chronic diarrhea is usually inevitable. (I lost mine, unfortunately).  

Awesome that things are behaving normal for you!!  

[Deleted]

Nope. sorry to hear that. I lost most of my jejunum - the site for most nutrient absorption.

[anna7602]

Even when I am feeling good, there is this nagging persistence of all the issues I can't see but am aware of- the fact that I tend to get dehydrated easily, the foods I know won't make me feel so great so I pass on them, the fear I always feel as soon as my plane takes off for somewhere that I may have forgotten to pack my meds, etc. etc. etc. While feeling good might mean being symptom free, my mind does not allow me to live a truly symptom free life, ever.

[caramia]

That's interesting- my dr said remission = no active disease (inflammation from the crohns). According to her, I've been in remission for over 3 years, since my last colonoscopy was normal. But, I've had symptoms that whole time. Usually they're manageable, but there are still symptoms. When I feel good, it's because I've taken my meds right, I've taken the right supplements, and I've eaten/avoided the right things. Feeling good doesn't just happen, I have to work for it.

[anna7602]

Mar 24, 2013 11:58:59 GMT -5 caramia said:

Feeling good doesn't just happen, I have to work for it.

This is a better way of putting what I was trying to say above. I will never just float through the world eating and doing whatever I want without any consequence.