What is remission like for Crohn's?

[bball diva]

Ok, I have had CD for 19 years now and can't remember ever having a time where I didn't worry about diarrhea, cramps, pain, etc. So, I just stopped taking Imuran about a month ago and am still on Entocort and Pentasa and actually don't feel that bad. In the last month since I have been off of the Imuran, I am still extremely fatigued and feel bad (malaise), but have only had about 5 or 6 bad days. These days were the typical "in the bathroom all day" days, but the other days were not bad at all except for the fatigue and exhaustion. About 4 months ago I was diagnosed with a fistulae, and my bloodwork from last month shows the regular Crohn's markers (but is stable).

So my question is, what exactly is remission like? Is it mostly good days with some bad days or is it all good days and no times where you are like "here we go again"?

 

[farm]

I've had it for 15 years and was in "remission" (according to my GI) for about 7 years.
Remission for CD is not like remission for cancer where your life is normal again.
I still had the screaming scours off and on, I still had stomach and lower GI pain. Weight went up and down from month to month without any diet/exercise change. I still had some late night low grade fevers that were blamed on CD.

During my remission I still took 2,000mg of Pentasa everyday just to ensure I didn't have any flares and still had to take pain meds from time to time when the lower GI acted up.

It seems like having crohns = unexplained/unexpected bowel movments; but during a flare, all bets are off and anything could happen.

Come to think of it my doctor never used the word remission. It calls it "crohn's" or "active crohn's."

 

[Josh]

that makes me depressed. Im 18 and diagnosed 6months ago. I thought remission would be a normal day to day life lol.

 

[farm]

Don't get depressed just yet, that is my verision of remission. I know some folks who do have normal lives and no pain or signs of the disease during remission.

 

[My Butt Hurts]

I think that remission is the absence of symptoms. Right now I am feeling about 95% normal, so I consider myself in remission. I still am reminded that I have Crohn's disease every day. I don't think that will go away. I still have some bad days here and there, but they only seem to be diet related, and only last a day or so. Sadly, I am sure this remission won't last forever, but for now I am trying to enjoy it as much as I can.

 

[BWS1982]

I don't think there is variation of "remission" for patients, in my opinion. Some Crohnies have the D, some have the C, some can have dairy, others have to avoid it like the plague. Some get miracles off Remicade, others do best with just 5ASA drugs, then there's small bowel Crohns, oral Crohns, rectal Crohns, pyroderma gangrenosa, mouth ulcers, fisulas, it varies per patient what IBD is like for them............ But remission is fairly objective, I agree with MBH, it should be absence of symptoms, I don't believe there is a "remission for me is this, but I know one guy who is like this in his remission"....that doesn't make sense if you think about it, but that's just my take. The concept seems too cut and dry, it's our holy grail, beat this thing into the ground and then some, why settle for "almost"....

 

[farm]

BWS if your ideals are true, then I've never been in remission, eventhough my GI doc called it remission.

Would remission be the absence of ALL symptoms or MOST of the symptoms? MBH says she is only at 95% in her remission.

 

[fenway1971]

i agree with mbh's assessment. i think i'm in remission now - mostly pooping like a champ (1-2x per day, normal stool) but every other week I have bad day which I can tie directly to what I've eaten.

 

[BWS1982]

As I'm not a GI, I couldn't stand toe to toe on the matter with another GI, I'm simply saying what I've been told by my GI's and read on the matter as well, which is that it "should be" the complete absence of symptoms. 95%, 99%, 80%, those all sound awkward when describing something that should mean the disease is currently "dormant". The concept of having any or no symptoms sounds cut and dry to me, at least, I feel you either feel like you don't have Crohn's (and live like a normal person, which was my 2007 remission for 4 months) or you're flaring, one or the other, and there's just degrees of said flare up, badly flaring, mildly flaring, but to me the idea of a flare up is usually considered to be the disease showing itself and the body being ravaged.

I suppose if a patient is so ravaged that the body will never be 100% absent of symptoms, just because scarring or tissue trauma has precluded the possibility of such a goal, then you could say 95% is "remission", but maybe that's an exception not the rule?

Where to "draw the line" in defining remission appears to be black and white to me, perhaps because for a fleeting couple months I experienced the joys of having not a single sign I ever had Crohns, and since then I've had some degree or another of abnormal life via IBD. My GI's have referred to this as remission and have called everything else a flare up. This could be one of those varying "theories" and has to do with GI perception, similar to what causes Crohns or which is better, top down treatment or bottom up treatment, etc... It shouldn't be subjective or individual, but after a while on this site I've noticed it seems to be.

 

[farm]

You would think (at least I do) that if you were not having a flare you would not experience symptoms of the disease, however I still have some minor symptoms during remission. Mind you that they are not present every day but some.
During remission I do have days where I have NO symptoms of the disease, however I feel that they are far and few between. Fatigue is the greatest of all symptoms I recall having during remission. That might be from the fact that I am anemic from having Crohns. I don't know.

 

[danman]

I would agree with MBH. It's not 100% remission, but you feel good enough to forget about it.

I'm feeling 100% remission for the first time in 20 years. But it hasn't been all bad. Sometimes I had complete remission for up to a few months, and I had a lot of trouble passing BM's.

I actually preferred 90-95% remissions. I still had D, but it was more under control.

For the younger members, the longer you have this, the easier it gets. I know it sounds weird, but it's true.
You body still has Crohn's, but it adapts itself to the condition.

I had this conversation with Pen one time and she pointed it out to me. It's not age, but how long you've had the disease.

 

[bball diva]

OK...I think I jinxed myself. All of this talk of remission or inactive Crohn's and mine is back with a vengence!

I guess I was wondering because I can't remember a time when I was symptom free and I have had CD for 19 years. I've had a couple of good weeks in a row for the first time, so I was really excited. I thought....maybe this is it? Maybe this is what remission is like? It didn't last long though!

MBH - I think it's great that you feel 95% absent of symptoms. I guess you must be right that we will always know that we have Crohn's and that it never really goes away, but maybe the symptoms decrease during "remission".

Farm - so you still had fatigue during your remission? I guess that's what I am confused about. Are people in remission with CD still having any symptoms at all or are they completely symtom free?

 

[My Butt Hurts]

I think that the slight symptoms you have in (near) remission will depend on what symptoms you have when you are flaring.
My symptoms when I am flaring are frequency (going 10+ times a day) and urgency (needing to get to the toilet in 20 seconds or less or have an accident). I rarely had bleeding and rarely had pain.
Right now I go one or two times a day usually, and usually as soon as I wake up, so the rest of my day is usually predictably poop-free. I say usually 3 times in that sentence because it can vary from day to day, so it's always in the back of my mind "will I crap my pants today? IF I have to go, will I be able to find a bathroom in time?" I have been able to make it to the toilet since I have felt remission, but I don't really know how long I have. I haven't had to test it, so I haven't had any accidents. Maybe I can hold it for a long time, I don't really know. But EVERY time I have to fart, I wonder "Is this REALLY a fart, or is it gonna end up being a shart?" So far it's been safe, but I think I have been traumatized from crapping myself so much that I will never feel completely safe. My poop is still soft-serve and thin and riddled with pentasa granules, I only get very ocassional belly aches that only last a very short time, I still have to take my meds 4x a day, my worst symptom (besides the worry, which is subsiding a bit) is a teeny bit of leakage, not even every day. I still love my Calmoseptine when I need it. I still keep a change of clothes in my car just in case. I still have to watch what I eat, and make sure to avoid things that may trigger a flare.
That is why I can't consider myself in complete remission, but damn I sure do feel great for the moment.

 

[farm]

OK...I think I jinxed myself. All of this talk of remission or inactive Crohn's and mine is back with a vengence!

I guess I was wondering because I can't remember a time when I was symptom free and I have had CD for 19 years. I've had a couple of good weeks in a row for the first time, so I was really excited. I thought....maybe this is it? Maybe this is what remission is like? It didn't last long though!

MBH - I think it's great that you feel 95% absent of symptoms. I guess you must be right that we will always know that we have Crohn's and that it never really goes away, but maybe the symptoms decrease during "remission".

Farm - so you still had fatigue during your remission? I guess that's what I am confused about. Are people in remission with CD still having any symptoms at all or are they completely symtom free?

Yes, I still had fatigue but not everyday like I do with a flare. Somedays I felt absolutely nothing and it was great, but every week there was some reminder. Night sweats from low-grade fevers, fatigue, minor cramping, sharp pains, etc.
But not every day. I had the big D a couple times a week for no reason.
During this time my GI said I was in remission, and I felt like I was. But like I say, every few days or so I would feel one of the above symptoms.