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What is remission really?

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Ulcerative Colitis
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Posted 6/19/2008 6:50 PM (GMT 0)
First of all, I should point out that I'm brand new to the boards. I've been reading through alot of your posts and all of you seem to know your stuff way more than I do. Also, I have Ulcerative Proctitis. I hope that doesn't disqualify me from the forum though it certainly makes me the weanie of the group. It sounds like a lot of you have it WAY worse than I do. So, I apologize in advance for whining about my comparatively lame problems. Lastly, I love smurfs. smurf

Anyway, I really want to know what I should expect out of this conceptual colitis paradise that we all call remission. Here are some questions:
1) Does remission imply that you experience no symptoms at all?
2) Do you stop taking medication during remission?
3) What is a reasonable amount of time to be taking medication and expect remission to occur? IE, how long should you stay on a particular medication before you scrap it and say "This sucks AND it's not working."

I have a peculiar urge to spill my guts right here - right now, but it seems the topic will be better served if more focused. Rather than blather out a tale I'm sure you've all heard a million times before, I'll bid you all adieu and just say thank you for reading and knowing more about this stuff than I do.
Posted 6/19/2008 7:06 PM (GMT 0)
Remission is when the UC is inactive.

Medication in remission - there are different schools of thought. I believe in taking meds ALL OF THE TIME to keep the inflammation down and prevent the spread of the disease through the colon. Taking meds in remission is also thought to keep flares from being as severe. Others do not take meds unless they are feeling unwell.

The time table for remission is a variable one. It's individual. I believe that you need to give a 5ASA at least a month to work before trying a new one. If after three months you are not seeing marked improvement - time for the next one. An immunosuppressant takes 3-6 months to start working, so usually a person is on prednisone while waiting for the immuno to kick in. Steroids should start working within a week - a few days usually, but dependent on how often you have used them.

We're all anxious to hear your story! You can "spill your guts" here or create a new "get to know you" thread, if you'd like.

Glad to have you as a HealingWell member!
Posted 6/19/2008 7:19 PM (GMT 0)
Thank you dakotagirl! It's so helpful to hear "real world' information. The stuff I get from doctors and mainstream websites is pretty bland.

I think I will start a new post and give you all the low down. Thanks again!!
Posted 6/19/2008 7:21 PM (GMT 0)
Hi and welcome. I too have Ulcerative Proctitis. Basically, I think it's the same thing as UC, it just hasn't spread yet. Hopefully it may not. Anyhow, I have read a lot on this site about people in remission (I thnk it is when they are not flaring). What I've noticed from reading is that a lot of people that have chosen to go off meds, once they flared had a hard time and the med didn't work as well and then had to go on steroids (Prednisone). I fear that (a lot of bad side affects), I plan on staying on my meds forever, my husband doesn't like the idea. I plan to get a second opinion to see if they concur with that decision. Whatever you decide is your choice, your body, and everyone is different.
Good luck to you. Take Care, Bellski
Posted 6/20/2008 12:04 AM (GMT 0)
My personal experience with going off meds can be seen in my signature.Started out with Procto-Sigmoiditis,slackened off with my med regime and ended up with the entire length of my Colon involved.And yes,flares are MUCH harder to get under control,if you haven't been on a maintenance med.I'm now med compliant again,and have come out of about 18 months of hell,enough said!
Posted 6/20/2008 10:57 AM (GMT 0)

Don't feel like a weenie, we are all suffering, proctitis, colitis, it's all a pain in the a**.  I was first diagnosised with UC 10 years ago and except the first year and up until now I've had it really easy.  The first year was rough for me because I didn't have a very good doctor.  I was in and out of the ER for IV fluids because I could't even keep enough liquids in my body.  I was having 20-30 liquid stools a day, it was bad!  I found a doctor that listened to me and took my case as an individual and I was on Pentasa for about a year or so.  I had what I called mini flare up on and off for maybe another year, meaning occossial bouts of bloody diarrhea but nothing requiring the ER.  To get to the point, for the last 5 years I had been off of all medication and essentially symptoms free.  I tend to have problems for a day or two just before I have my menses (sorry guys if your squeemish about that word). 

So, as far as remission, it's going to depend on your body, your stress level, your life styles.  Make sure you get a doctor that will listen to you!!! I cannot stress that enough.  I would not have suffered as much that first year if I had had a different doctor.  Even if you live in a rural area like I do and have to travel a ways, it's worth it for the sake of your health.

I've been back into active duty for the last three months (not the military, my UC is flaring up) and am not taking steroid enemas.  A new treat for me, but since I wansn't responding to the Pentasa this time my doctor wanted to get more aggressive because of the amount of bleeding I'm doing. 

Good luck with your proctitis and may you have a doctor that will treat you as an individual with dignity and respect because this can be a very embarrasing diagnosis.

Posted 6/20/2008 1:59 PM (GMT 0)
I too have proctitis and I do feel I am fortuneate not to have UC as bad as others.

I have one flare a year, always during the snowmelt in spring (I am in Ontario), I was on meds for the first time this spring (500mg salofalk sup.) and they worked almost instantaneous for me.  I took them until my symptoms disappeared, then I slowly weaned off them.  I do not take any meds between flares, my GI said it was not necessary if my flares were far apart.  In my first two flares, I did not take meds and was able to get into remission.  The first flare was by far the worst and lasted months (didn't have meds was waiting for diagnosis).  The second and third were not nearly as bad, they lasted less than a month.

During remission I have NO SIGNS of UC whatsoever.  No D, no urgency, no mucous, no blood.

Posted 6/20/2008 4:39 PM (GMT 0)
To answer the OP:

A definition of clinical remission in UC is - no blood, no diarrhea, no urgency, healing visible on histology, and normal blood test results. The problem is this - some people have a very mild form of UC, or limited involvement and they achieve remission easier, stay in it longer and don't experience severe symptoms when they flare. So for them, remission really is "feeling normal". But those of us who are unlucky enough to have pancolitis or refractive disease experience everything much more intensely and have a lot of trouble with achieving and maintaining remission.

Another problem is - when you have constant inflammation in the colon, just bubbling underneath the surface ready to erupt, negative changes happen, scars begin to form and eventually the colon becomes rigid and narrow, like a garden hose. This is unfortunate because it impairs normal colonic motility and results in cramping, pain and urgency even when, by all other parameters, you should be in remission. Therefore, as hopeless as that sounds, some patients simply can't feel like they did before the disease, even when they're in remission. You just learn to live with it, or you opt for surgery and get the darn thing out.
Posted 6/21/2008 1:26 AM (GMT 0)

WreckedRectum said...
Anyway, I really want to know what I should expect out of this conceptual colitis paradise that we all call remission. Here are some questions:
1) Does remission imply that you experience no symptoms at all?
2) Do you stop taking medication during remission?
3) What is a reasonable amount of time to be taking medication and expect remission to occur? IE, how long should you stay on a particular medication before you scrap it and say "This sucks AND it's not working."


1) Yes, you get to be "normal" for a while;
2) No, maintenance drugs are critical;
3) Changes from person to person.
Posted 6/21/2008 5:11 AM (GMT 0)

Hello..

  I was diagnosed with Ulcerative Colitis in 2005. I was on constant medications and tried to taper off twice after achieving what I thought was a good remission. I flared back up 2 times within 2 months of quitting my meds.. That's when I decided to go on and stay on my meds for at least a year, even if I were symptom free. This last December, I was in Montana taking a break from life and when I came back to California, I left Montana without my meds.. That was December 11, 2007 and I have been off all and any U/C meds since then. I am in total remission as far as I can tell, no symptoms, blood or mucous and I can eat pretty much whatever I want, within reason of course as the older I get, the more delicate my tummy is..... So now it's been 6 months and I have decided to stay off any meds and just see what happens...  Keeping my fingers crossed.... and my toes too.. lol....

  That's my story and I'm stickin to it!! LOL....     

Posted 6/22/2008 2:58 AM (GMT 0)
Hello Everyone-
All of your stories and advice are illuminating... truly. I feel like I should give some background on my situation as many of you have. I think I'll take dakotagirl's advice and start a new thread to do just that. I'm completely psyched that this forum is so active and so many people are willing to take the time to share. Pretty cool.

Thanks again!
Posted 8/29/2013 1:14 AM (GMT 0)
This is a great site.I have just been diagnosed w UC not fun...I spent 2.5 weeks in hospital on iv steroids and TNE for nutrients threw a pic line.I have been home for 3 weeks getting stronger and symptoms are becoming less severe and and not as often..Predisone and asacol.However Iam finding it super hard to stick to plain diet.At first I did not want to eat now I feel like it is all I want to do and of course not the right choices.anyone else experience the want to just keep eating I hope it passes or iam going to end up back in a full pain flare and probably gonna be super fat..,,;( Also anyone now how long it usally takes to feel somewhat normal again..And how long should one wait to get back to physical activity Zumba fitness..???when on steroids?
Posted 8/29/2013 1:48 AM (GMT 0)
The steroids are making you hungry.
Posted 8/29/2013 4:03 AM (GMT 0)
I have ulcerative proctitis as well and am trying to battle a long flare without any prescriptions. Was taking asacol and canasa on and off since diagnosed in 2011. Midsummer started having a flare up while still on meds and at same time our insurance switched so I was going to have to go out of pocket until we hit a $5k deductible then it was only going to cover a small portion. Long story short, I'm a month in trying to only use diet, exercise and herbal remedies to go into remission. Still have urgency, d, and some mucous. I have blood once a day just 2-3 very small dime sized clots. I just ordered ccherbal which I read about here to give that a shot as it seems to be one of the herbal remedies I have not tried yet. Beyond that, the two powders I drink daily cover all the other bases of what most people see, to be taking on this forum. I have not reached remission since my most recent flare up but do fondly remember the good ole days when all that was in the toilet was what was supposed to be there. I hope to get there again and hope you do too. Welcome to the forum, I am new too and I will post an update on the ccherbal after I take it a few weeks. Good luck.
Posted 8/29/2013 4:48 AM (GMT 0)
Honestly, ulcerative proctitis just means that your disease is limited to your rectum, and in many cases, if you have proctitis, your symptoms are going to be pretty terrible even if the rest of your colon is fine. On the other hand, if your disease is higher up in your colon and your rectum is fine, you sometimes have no symptoms. So, not only are you on the right forum, but your disease is also pretty significant.

To answer your questions:

1) Clinical remission means that no signs of disease are found when you have a colonoscopy and biopsy. As far as all diagnostic tests go, your colon is completely normal. Symptomatic remission means that you're not experiencing any symptoms of UC. You can be in symptomatic remission but not in clinical remission. I know I'm in symptomatic remission right now (no symptoms), but I haven't had a scope in a while, so for all I know, it could still be all colitis-y up in there.

Your doctor's goal will be clinical remission. While that's great, most of us would be satisfied with symptomatic remission.

2) Well, have I stopped taking meds during remission? Yes. I had two flares prior to the one that brought me here, and I stopped taking meds after those flares ended. It was a HUGE mistake.

Most people here will advise you to stay on your meds during remission. If you're not happy with the medication you're taking, or you think you could have your dosage adjusted, talk to your doctor. I hate being on medication when I'm "not sick," so it's a struggle for me to stay on my meds when I feel fine. In the past, I'd just stop taking meds without telling my doctor. Now, I have a doctor who's very understanding and flexible, and he's worked with me so I don't have to be on more meds or higher doses of meds than I feel comfortable with.

Basically, take maintenance meds. Taking a pill every day is better than living through the past year and a half of my life.

3) It depends on the medication (or combination of medication), the person, and the flare. In the past, I've gone into remission on moderate doses of oral mesalamine (common maintenance med) in one month. My last flare got worse and worse even on the highest tolerable doses of mesalamine.

With mesalamine (Asacol HD), I've gone into remission in 1 month. With Asacol HD + hydrocortisone enemas, I went into remission in 2 weeks. This past flare, I almost got into remission with Asacol HD and Rowasa (mesalamine enemas), and then backslide. It took 6MP + Remicade + hydrocortisone enemas, over the course of 3 months, to get into remission.
Posted 8/29/2013 12:29 PM (GMT 0)
1) Does remission imply that you experience no symptoms at all?
As ScienceGirl said, there's symptomatic remission and clinical remission. My personal definition of remission also includes that you are NOT on prednisone, as it's not a maintenance drug. I've been in symptomatic remission since May of 2009. I didn't have a scope to confirm clinical remission until October 2011. I've had zero symptoms during the 4+ years of symptomatic remission.

2) Do you stop taking medication during remission?
I personally think it's VERY unwise to do so. Studies show that the biggest reason people have flares is non-compliance with meds. Also, mesalamine has a very, very good safety profile, so I'm completely comfortable taking it long-term, and feel that staying on it is a MUCH better option than flaring. Also, I've heard a lot of stories of people who quit taking mesalamine, then flared, and found that mesalamine no longer worked. I'd rather not have to move on to stronger drugs if I don't have to.

3) What is a reasonable amount of time to be taking medication and expect remission to occur? IE, how long should you stay on a particular medication before you scrap it and say "This sucks AND it's not working."
That's a very difficult question to answer. As long as you're improving (even if it's very slowly), my opinion is to give it several months. If you're not improving at all, I'd say 6 weeks or so is long enough to know it's not going to work.
Posted 8/29/2013 1:51 PM (GMT 0)
What is remission... well at least to me it is a fantastic but vain hope lol. I've been fighting uc for 1.5 years and I have yet to experience remission.

I gotta join the chorus here: you are a fool if you quit your medications because you 'feel good'. As you will flareup in time and for many it is one mean mother of a flareup. If you like falling asleep on the bathroom rug, as you are going to the bathroom so often and sharp pains emanating from your intestine then be my guest tongue
Posted 8/30/2013 10:11 AM (GMT 0)
Diagnosed 1988. For me personally , remission is non pharm. drugs for long periods.
Those that shoot for that goal work very hard for it. I fully understand those that just want to do maintenance drugs.
Over the decades I have had 3 remissions, one @ 3 + years, one @ 1/1/2 years and current run @ 3/4 months aprox. All were ended from run ups of poor food choices(i.e. cockyness). I have always tapering med down to half normal dose for months before going totally off pharm med. During this peroid of tapering listening to your body is key. If... your generally eating right, a poor food choice will talk to you.

A newbees may ask... what are good food choices? Well, look at what those w/ out meds are eating. Because they are not masking their symptoms with maintenance drugs, they truly know for sure what to avoid.

Again, for newbees. General things to avoid until you can confirm ok (maybe never ok)
Dairy, gluten, fried anything, carbed beverages, spicy stuff, processed foods, caffeine.

Healthy cooking, healthy cooking & more healthy cooking.

I just had a well visit with my GI Doc, lol found out I was one of his first patients.
I just preped last night for my colonoscopy today, wish me luck...

Post Edited (25yearsw/colitis) : 8/30/2013 4:16:52 AM (GMT-6)

Posted 8/30/2013 1:09 PM (GMT 0)
I hate the words "clinical remission". That is just such a load of crap. If I were still having symptoms and the doc came up to me and told me, "Good news. You are in clinical remission." I would really want to punch his lights out.
Posted 8/30/2013 1:42 PM (GMT 0)

25yearsw/colitis said...
Diagnosed 1988. For me personally , remission is non pharm. drugs for long periods.
Those that shoot for that goal work very hard for it. I fully understand those that just want to do maintenance drugs.
Over the decades I have had 3 remissions, one @ 3 + years, one @ 1/1/2 years and current run @ 3/4 months aprox. All were ended from run ups of poor food choices(i.e. cockyness). I have always tapering med down to half normal dose for months before going totally off pharm med. During this peroid of tapering listening to your body is key. If... your generally eating right, a poor food choice will talk to you.

A newbees may ask... what are good food choices? Well, look at what those w/ out meds are eating. Because they are not masking their symptoms with maintenance drugs, they truly know for sure what to avoid.

Again, for newbees. General things to avoid until you can confirm ok (maybe never ok)
Dairy, gluten, fried anything, carbed beverages, spicy stuff, processed foods, caffeine.

Healthy cooking, healthy cooking & more healthy cooking.

I just had a well visit with my GI Doc, lol found out I was one of his first patients.
I just preped last night for my colonoscopy today, wish me luck...

Really helpful post, thank you from one of the newbies.

PS I did my first colonoscopy last week, am I the only one who found the prep a breeze ? I've suffered from constipation on and off for a couple of years, and I found the prep was so much easier than when I previously had to take epsom salts (or similar) to move by bowels during a bad bout of constipation !!
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