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How long did it take you to reach remission?

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Ulcerative Colitis
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Posted 8/16/2014 3:10 AM (GMT 0)
Curious on stories of remission. How long it took, what medicines achieved it, etc...
Would like to see some light and something to look forward to.
I'm currently 1.5wk in on 30mg prednisone and 4apriso a day and I haven't noticed much of anything except I can take a slightly lower dose of immodium and not be as bad.
Posted 8/16/2014 3:13 AM (GMT 0)
Been at this for four years now. I'll let you know when I get there.
Posted 8/16/2014 6:10 AM (GMT 0)
3 years. lialda and pred. now more pred and only 2 lialda
Posted 8/16/2014 7:13 AM (GMT 0)
I've been in a flare since December... Tried enemas, switching mesalamine brands, imuran, SCD diet (for 3 months), then I got sick with c. diff so for that I've tried flagyl, dificid and vancomyocin... Then I got pancreatitis from the imuran so started remicade (imuran wasn't doing a thing anyway) and now I'm on remicade, salofalk enema every night, vanco for c diff and prednisone because of a stupid GI at the hospital. My symptoms just seem to be getting worse. Actually had my first accident last night.

Sorry for the rant, I'm just getting so frustrated, remission sounds like it would be nice, lol.
Posted 8/16/2014 11:33 AM (GMT 0)
2.5 years and waiting for a remission...
Posted 8/16/2014 9:50 PM (GMT 0)
I'm fairly new to this but been on pred for 7 weeks. started at 40mg reducing 5mg a week stayed at 20mg for to weeks then start reducing by 5mg a week until I get to 5 mg then finish, also currently takin 4.8mg of Asacol. check signature for supplements.

having one fully formed bm every morning best they have been in 3 years.

Not sure if this is remission I suppose I will find out shortly as I come of the pred. 3 weeks left to go.

Felling the best I have for a long time and am feeling confident.

Good luck
Posted 8/16/2014 9:53 PM (GMT 0)
sorry have had been in flare since December all started to look good once I started the Pred started seeing results within days. But I suppose it could take a little longer depending on how bad the flare is. I have moderate Pan-colitis.

Again I hope this helps and good luck
Posted 8/16/2014 10:00 PM (GMT 0)
about 32 years.

I'm probably about in remission as much as I'd hope to be. No noticeable bleeding. I go about 3-4 times every morning. No pain.

Life goes on, but it's been much, much worse. So I'm happy.

John
Posted 8/16/2014 10:30 PM (GMT 0)
I have had two actual flares since diagnosis in 2009. The first was moderate and asacol HD and especially canasa reduced symptoms to where I was fully functional but had very loose stools 3-4 times a day in about 8-10 weeks. Full remission took 3 months or so more on just oral meds and a healthy diet. My second flare(mild) was about a 3weeks/month with a couple weeks on each end where I was still having some blips. I took colazal the entire time and been using it for several years and used Rowasa for a week.

You will get discouraged reading this board because the majority of the people are doing below average. The chance you will do as I do is over 50% with a 75% chance you will do almost as well. Unfortunately about 25% of UCers have stubborn refractory disease. You also have many people that choose not to use more aggressive treatment . Pred gets a bad rap here and it does cause problems for some but it can work very well and give you a long remission using 5asa drugs. A week and a half isn't long enough to be worrying.
Posted 8/17/2014 12:31 AM (GMT 0)
i've only had three flares but the first lasted a year and the other two were about two years long.
Posted 8/17/2014 1:41 AM (GMT 0)
rthompson...sorry about my 32-year reply.

UC as you can see has been around for a long time. I probably got it before you were born!!

Truth is ...over that time I've probably gone into strong remissions over 10 times or so. Some short - a few months - and others longer, like a few years.

Everyone here has different degrees of it, but when you figure out what works for you it will be fine. I still believe after all of these years, it is diet-related.

Let's put it this way. Today I had two workouts. Mountain-climbing, and a vigorous swim at the gym. Many people without UC don't exercise at all! We may have UC, but we can still kick butt! (no pun intended there)

John
Posted 8/17/2014 3:20 AM (GMT 0)
First of all, this site is most likely not going to give you an accurate result in remission. As many people who reach remission are out living there lives!

I was diagnosed with UC in 2012 and was in remission 6 months later with 100mg of Imuran, remission lasted for 9 months. My UC started to creep back up, and I was stupid and came off all meds. Only to find myself in a HUGE flare. However, I'm on Humira now, and can see remission coming soon!

I love this forum and it does help, however, when you are in remission you don't want to be reminded of the disease over and over again, you are OUT LIVING A LIFE!

I hope you achieve remission soon!
Posted 8/17/2014 2:17 PM (GMT 0)
I respectfully disagree with the theory that only the sickest find their way to this site and that many are in remission. Everything you read on this disease states that it is a chronic life long condition with periods of flares and periods of remissions and that the meds we take for the disease often have many side effects. After four years of researching this I have yet to find a description of the disease which states that most people go into remission and don't have to worry about UC anymore. Only a select few are so lucky. We are more the norm than the exception. In fact, my GI tells me that I am pretty lucky and I haven't seen one remission yet in the four years I've had this.
Posted 8/17/2014 5:27 PM (GMT 0)
Yeah Gary, I probably exaggerated my (10 remissions), it's probably really only about 3 times. I just didn't want the original poster to feel too bad.

I guess my point in my post is that you can feel good - or at least try to - in other ways (e.g. exercise, different methods of thinking, etc.). I really think that's true for all the difficulties in life we all face about everything and not just UC.

Happy Sunday! - see I'm trying! :)
Posted 8/17/2014 7:01 PM (GMT 0)
I disagree with Gary. I think sites and forums for chronic ill health naturally select those who are doing worst with their conditions. If you are not having a bad time with your condition then you are not on a PC googling symtpoms and the like. If you are then you will be more likely to find your way to and post on these sites. I'm not saying everyone here is doing poorly with their condition but the average health status of people on here is worse thn the average health status of people with that condition.

I'm a statistican involved in 2 ongoing trials - for IBS & migranes (not connected). We sampled 100 people with both conditions and asked them to rate their symptoms currently from 1-10. Both samples averaged a score of just under 5. We also took a large random sample of people with both conditions who used a number of UK health forums and asked them to rate their condition. The average was a whopping 7.5 for IBS and 8.2 for migranes.

The difference is so pronounceed that the marketing manager for one of the drug trials is now targetting advertisement of their products on such sites at ten times than before.

It's a completely different population of people who used forums like this than the average population who suffer from the condition.
Posted 8/17/2014 7:13 PM (GMT 0)
But if that is true then why doesn't all the literature say that most people go into remission? I have never found one source of information yet on IBD that says most people go into remission and only a small percentage of patients have ongoing problems handling their disease. All the literature I have ever seen all says the same thing - that it is a chronic life long disease with periods of flares and remissions.
Posted 8/17/2014 7:26 PM (GMT 0)
Hi all, sorry about the late reply and thank you all for chiming in. Arizonahiker, I have been dealing with this for 3 years now, I'm only 25 but I learned a lot on how to "deal" with it in the last 2 without doctors. Working out did decrease, over those 3 and I have cut a few things in diet that make me pretty bad. Staying busy, keeping my mind off things helps me greatly, even though I'm constantly scoping out the nearest bathrooms just in case.
While some stuff I read here could be interpreted as discouraging, I look at the brighter side of it all. I'd rather know the reality of the negative, and know I can strive to reach that positive goal rather than be disappointed that I can't get there, and be jealous that everyone else can.
This disease is nowhere near fun, nor do I get what anyone of us did to deserve it. I wouldn't wish it upon my worst enemies, but this sight is nice to have all of you to relate to and keep one foot in front of the other.
Posted 8/17/2014 8:05 PM (GMT 0)
Gary,

I suffer from anther life long condition - its called a stigmatism in my eye!!! Now I regularly take my maintenance drugs (ie my glasses) and from time to time my prescription is tweaked. The awful news is that a stigmatism has a 0% remission rate (ignoring surgery). But it has absolutely no effect on my quality of life. I've googled stigmatism I think twice in my life!! Now there are rare cases where stigmatism can really effect peoples eye health and I'm sure for those people they are out there looking for as much info as possible on the condition. But as you suggest yourself there is no difference in the quoted remission rate for both of us - its 0% but that has an absolutely minimal, if any, effect on how people with glasses choose to gather info for the condition.

You are suggesting that you can sort of pro rata the level of an individuals condition through to remission even through to surgery perhaps. That's completely in accurate. UC is a chronic condition which will have its ups and downs with people. We are not suggesting that there naturally are 2 groups fro outset - one of who look for info, one who don't. What we are suggesting is that for people with different current levels of their condition there is a natural selection (not a direct medical one) about who will present on a forum, or website looking for info. People will change between groups over their lifetime. But there are absolutely other factors that also effect these ratio (internet capability to mention just one). So any suggestion you can just expect two completely homorgeous groups is just not right.
Posted 8/18/2014 12:53 AM (GMT 0)
I was diagnosed in Feb of this year, and by the end of May this year I knew I was in symptomatic remission, so I was one of the fortunate ones!...everyone is different, but I should add I don't think its all luck, I immediately stopped drinking alcohol, ate the right stuff for me, and became informed about the disease...now I have also completely stopped smoking (e-cig) and I am swimming every day, so I feel like I am getting stronger every day, before I couldn't be arsed to exercise.....you have to help yourself.
Posted 8/18/2014 1:42 AM (GMT 0)
After my initial diagnosis I was put on Canasa suppositories and was in remission within 2-3 weeks. That remission lasted for about 4 and a half months.
Posted 8/18/2014 2:53 AM (GMT 0)
17 years and still trying to get there. My expectations have changed over the years.
Posted 8/18/2014 5:16 AM (GMT 0)
My first remission came quick with Asacol but it only lasted about a yeAr. I was in a flare for a long time regardless because I had no health insurance and I couldn't afford a doctor or prescription. The flare after Asacol was harder to control. Pred got in managed but I couldn't get off of it.... I think a flare lasts as long as it takes to control it and it takes a lot of patience and trial and error. There is no fail safe plan.
Posted 8/18/2014 4:02 PM (GMT 0)
It took me 2 months to get in remission. Got real bad after colonoscopy during first and only flare so not looking forward getting another one soon. I have been in remission for 3 years. I am on Delzicol. I do eat a lot of probiotic foods that I feel help me but only time will tell.
Posted 8/21/2014 2:36 AM (GMT 0)
I'm starting to feel like remission is a myth. I keep thinking maybe this is it...this is as good as I can get. It effing sucks.
Posted 8/21/2014 5:05 AM (GMT 0)
I guess I am one of the lucky ones. I was diagnosed about 8 years ago and the medication they put me on, Canasa and Asacol, helped very quickly. (like right away) I have pretty much been in remission ever since...kept on meds...now facing a different challenge as a new doctor just did a colonoscopy and is questioning if I even have UC because everything looks great and the biopsies came back good. I wish you quick remission and healing.
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