What does remission feel like?

[Jane]

Hi all -

For those of you who have achieved remission what does it feel like? Do you still have symptoms? If you do have symptoms are they less severe than when you are flaring?

I see my GI doctor today and based on my last visit I feel like he may say I am in remission, but I'm not sure I agree with him.

I am tapering off of entocort and am taking 6 mp. My bms have improved. Instead of 4-6 a day I have 2-3 a day. They are slightly less urgent. Instead of having to sprint to the bathroom I simply have to walk quickly when the urge hits. : )

But I am still tired. I am trying to exercise again, but I am not bouncing back after going out for a short run. My legs feel drained.

I still have abdominal pains. They are not severe, but I'll feel uncomfortable in my upper abdomin. At my last visit the GI doc said that was reflux.

For those of you who have been in remission, did you feel great when you were in remission? Did you have energy? Or did you still feel tired and continue to have unusual poo.

Thanks for any insight!

 

[My Butt Hurts]

OO! OOO! I KNOW!
Remission is so amazing. I think it is different for everyone though, just like our symptoms and our treatments.
For me, my biggest issue was frequency and urgency. Now I am only going 1 - 3 times a day, and it means that I have more time to get to the toilet. I used to look for bathrooms everywhere I went, now I can go out without freaking out about toilet locations.

I still don't have completely formed poops, not sure that I ever will. I still have a tiny bit of leakage once in a while, but as long as I can maintain weight and not crap myself, it's all good to me.

I will never forget that I have Crohn's. I am always watching what I eat or getting worried by a teeny setback, and taking my meds, but I can feel close to normal when I am in remission.

It doesn't honestly sound like you are in remission to me, just that your symptoms are a bit milder than they were before.

 

[littlemissh]

You are not in remission until you are off steroids. Your symptoms may have remitted but by definition you have to be off steroids.

 

[Lee]

Remission feels great. I only go to the bathroom once a day unless I eat something that upsets my stomach. All the pain is gone.

 

[Bill41]

After my cipro and flagyl round I have lost all the pain, fistulas still there because no surgery appetite is back and strength slowly coming back.
Funny thing was my GI and surgeon didn't offer to prescribe anything when I was in full blown mode...had to go complain to my family doc and he gave me the antibiotics.

 

[Snookums]

I have often wondered the same as I have spent the last two and a half years not in remission and not totally flaring. My disease is what my docs refer to as active. Apparently if you are getting the right treatment you can live a fairly normal life, I cant wait to experience that as my life certainly isnt normal at the moment.

 

[Pirate]

Remission is like Heaven. Its like a land of lollipops, candy canes and gum drops. Its the happy place in everyones mind. Its a place where you can smile and really mean it.

For me its only going 1-3 times a day with totally formed BM. Its when you don't have to do the POOPY dance trying to get to the bathroom. Its when you rub your stomach, not because of pain and cramps but because you just ate something that you normally don't dare and it tasted oh so good.

But everyone is differant. I still have the occasional day with mild cramping and the big D but its so much like being a normal person.

I pray that everyone finds remission and it lasts a long, long time.

 

[Misty-Eyed]

Ahh I think I may be the only person in the world with Crohn's that doesn't use the terms remission and flare.

If that was the case, then I would of had a flare that lasted for 17 years and have only been in remission for the past year. But even then, I feel like a 'normal' human being the vast majority of the time, but I still have a lot of inflammation inside me. So technically I'm not even in remission. Go figure!

In my experience, it's not if you are in remission or having a flare. It's how well you feel in general. I never ever thought I'd ever feel this well but I managed it!

 

[Lisa]

To me, remission is symptom-free with NO medications....I used to be able to achieve that when I was a child - but the time between flares got shorter and shorter.

Even now, I would not call myself 'in remission' as I have to be on a maintenance drug.....

 

[Lydia]

There is remission and then there is medically induced remission.

Either way I define it as no active disease, and no symptoms. I do consider it remission, just a medical one.

I have had unmedicated remission for about 3 years once, but I took imuran to induce that one too. I took it for a year before hand.

 

[Lydia]

Remission is like Heaven. Its like a land of lollipops, candy canes and gum drops. Its the happy place in everyones mind. Its a place where you can smile and really mean it.

Heck yeah.

 

[Jane]

Thank you for your great replies!

Thank you for your great responses. Lee - I envy your one bm a day! Hope I can get there one day. : )

It seems like I'm making progress toward remission and I'm hoping I get there soon!

I am a little frustrated with my GI doctor. At yesterday's appt he decided we should do an ultrasound to look for gallstones and an upper endoscopy to look for ulcers. I am frustrated because at my last appt 3 months ago when I complained of episodes of SEVERE upper abdominal pain - I described the pain as being as intense as the pains I felt during labor and delivery of my two children - my GI doc decided it was reflux.

At this appt when my I said I have not had severe pain, it has subsided greatly, but I still feel discomfort sometimes he decided that we should look more into it.

I'm scratching my head - why didn't we look into it earlier?

Thanks again for your great replies. It is nice to know how you all define remission and how some of you are in remission. This list serve is a godsend.

 

[Lee]

Thanks Jane, I hope you and everyone else here reaches a state of remission on day too. Severe upper abdominal pain is the awful--some bentyl helps with that. I had a doctor in the ER tell me that the pain I was having was reflux too (even after I was admitted into the ER twice in 24 hrs--this was 4-5 years before I was diagnosed). I also lost a ton of weight then as well. Now I believe it was crohns disease. I have a colonoscopy scheduled for 7/7 and I canceled it because I feel great.

 

[Crohn'sFor Life]

For me, remission is no bloody D, and having to go no more than 3 times a day. Drug induced or not, I really don't care. I've been on steroids for nearly 2 years. I'm just happy to be out of the hospital and able to walk again.

 

[Aloysius M]

Remission...Closest thing I can think of was three days last week where I only had to go to the bathroom once a day and it was actually normal, not just a dull roar with more bad days than good the other 99% of the time.

 

[silvermander]

I had a small bowel resection when I was 8. So,from about 9 until right around my 16th birthday I was in remission.

Most of the time I was able to be a normal kid/teen without too many issues. After my SBR when I was 16, I was in remission until I was 20.

Since then I've had some bouts of remission here or there, but nothing long lasting.

For me remission, like any other time, is watching what I eat. But unlike in the middle of a flare, I could leave the house without knowing I need to get to a loo within 30 steps, meaning I could walk around the block without fear. I could have a drink without feeling like I'd been jabbing my guts with an ice pick for the whole next week. The pain wasn't too bad. I'd only spend an hour or so in the loo a day and it was usually only one or two trips, not 15-20.

I guess the biggest think I remember about being in remission was feeling like a semi-normal teenager. I could date and have fun without worrying every moment. I could make it through the school day without spending half my time in the loo. I'd spend a half hour in there before school and I could usually last all day.

I will get there, I know I will be in remission again!