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Does Crohn's ever go into remission unaided?

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Posted 2/9/2010 11:46 PM (GMT 0)
That is, without any medication, elemental diets or very severe diets such as the SCD?

It hasn't been my experience that it does, but when I was first diagnosed I learnt about Crohn's being a 'relapsing-remitting disease'. For years afterwards, everything I read about Crohn's confirmed that it was a disease which had periods of flare-ups and periods of remissions.

Nothing ever said whether the remissions could occur spontaneously or could only occur with medical/diet intervention.

I'm kind of curious about it. Even though I don't expect now after 11 years of untreated disease to go into remission. Untreated, by the way, because I couldn't tolerate the drugs or they didn't work.

Thanks in advance... skull
Posted 2/10/2010 2:51 AM (GMT 0)
Personally, I don't recall ever coming out of a flare without meds/diet. I've come out of flares with prednisone, entocort, humira, and SCD. I suppose anything is possible, but it seems unlikely that someone would spontaneously go into remission.
Posted 2/10/2010 3:02 AM (GMT 0)
I'm interested in what people have to say about this as well. I can't imagine how it would but at the same time I was very sick when I was younger for awhile when I was 8-9 years old and though it wasn't diagnosed as Crohns back then, it seems to me like it may have been. That being said, after I got better at age 9 I didn't get sick again until I was 18... so maybe!
I'm going to ask my GI about this next week when I have my appointment
Posted 2/10/2010 3:31 AM (GMT 0)
Yes, people do sometimes come out of flares unaided. I speak from experience.

I wouldn't recommend it though. Most will come out of flares quicker, and with less risk of damage done, with help from meds.
Posted 2/10/2010 5:04 AM (GMT 0)
I've had surgically induced remission, meaning took out disease and then i would go into remission for years, then the monster comes back, either thru trauma or progression of the disease itself. 1970 first surg. then again 1989, now on imuran and pred.15mg,thank god

Posted 2/10/2010 6:31 AM (GMT 0)
All 4 GI's that I've had in my 18 yrs of this disease have all explained it the same way to me...CD can go into remission or flares spontaneously and they can last anywhere from a day to yrs...RX is relied on to help keep people in remission but it's not a guarantee and every patient varies...alot of the reason for that is because it's such an individual disease and very unpredictable, has a mind of it's own for the most part...even those that have surgery have no guarantees because more often than not, the disease eventually re-occures near the resection site, this is often the reason why docs keep their surgery patients on RX after surgery in the hopes that the patient will hopefully have a longer remission period, works for some but not all...it's the nature of the beast.

:)
Posted 2/10/2010 6:37 AM (GMT 0)

I have been thinking about my Crohn's quite a bit since reading so many other people's stories and just learning more about Crohn's period. I can't say I have ever been in a flare that I knew of because I wasn't diagnosed until the age of 55 and then only from having a colonoscopy. They found a stricture and I had a resection last May, so this was obviously 'growing' for quite some time without any symptoms of diarrhea, pain or bleeding.

I did see a GI about 25-30 years ago but can't find any records.  Only remember drinking barium for a test and having a rigid sigmoidoscopy. I had diarrhea and urgency at the time but it went away without any meds or changes in diet and have always considered myself quite healthy.

I have had other things like psoriasis, canker sores and warts but never associated them with Crohn's until now?

Just my thoughts.

Posted 2/11/2010 12:29 AM (GMT 0)
@spookyhurst -- From this board, it does seem kind of unlikely... But since almost everybody who posts here is doing or taking something for their Crohn's, it's impossible to draw any conclusions about spontaneous remissions.

@sickandlucky -- See, I had never had suspicious symptoms pre-Crohn's. I never had an attack of anything which could have been described as Crohn's, so I'm pretty much certain my CD didn't begin until the year I was diagnosed with it.

@beave -- Yeah. Meds must obviously do something, otherwise they wouldn't be used.

@artistguy -- Was excluding surgical intervention too, sorry <_<.

@pb4 -- Four GIs all saying the same thing kind of confirms it; thanks!

@Bammer -- Cripes. Not sure if I've heard of a stricture without any symptoms before, and a surgery to get rid of it to boot.

Thanks for the answers, folks. I do wonder if I have an unusual disease course, though, in that my disease never seems to go into remission but nor does it accutely flare up, or only rarely. Most folks seem to have more obviously demarcated periods of flare ups and remissions than I do. I wondered if the remissions could happen spontaneously (took it for granted that the flare-ups could), and it seems like they can. Now I'm starting to wonder if there's a type of Crohn's not particularly liable to either remission or accute flare-ups (accute enough to place you in hospital or at least make your life a living hell), but which simmers along, boringly and annoyingly, for years, which may or may not eventually take a turn for the worse after decades.

So much I don't know about this disease... skull
Posted 2/11/2010 1:28 AM (GMT 0)
Well, I've had Crohn's for about 22 years now, and in that time I've had only about 3 periods (two months in 1988, two months in 1995, and several months in 2006) where I had what most would call flares, ie, times I had active, obvious Crohn's symptoms (fever, diarrhea, nausea, weight loss, etc). And the first two times (1988, 1995) it went away on its own with no medical intervention. In 2006 I got bad enough to be hospitalized, needed IV fluids and steroids, etc, to get it controlled.

So I've "acutely" flared probably 8-10 months out of 22 years. The rest of the time I tend to move back and forth between pretty good and so-so overall, with fatigue being my primary manifestation.

In a lot of ways I'd say my course is like what you're describing, just simmering along (I've had tests reveal active areas of disease even when I felt fine and had no symptoms beyond fatigue), for years. As I mentioned, I've had three obvious flare times, and looking back I've had times where I felt *nearly* normal (playing sports, etc), but most of the time I'm somewhere in between. Not totally sick, just a bit run down.

I actually think that's far more common with Crohn's than most people realize. The whole notion of flaring and remission is an oversimplification. Lots of people exist somewhere in between the majority of time.

Post Edited (beave) : 2/10/2010 6:36:24 PM (GMT-7)

Posted 2/11/2010 2:11 AM (GMT 0)
I think it's possible. I was not diagnosed until 18, but I have been sick much longer...maybe since 12? And I definitely experienced periods of worse symptoms and better symptoms during that time of 12-18, when I wasn't being treated. I guess that means I have to have come out of the flares on my own. I think medication definitely makes things better, though!!
Posted 2/11/2010 2:19 AM (GMT 0)
Through my nurses, doctors, and support groups, I've heard of patients living months and years with Crohn's without taking meds, but they seem the exception. When I flare, it gets worse rapidly.
Posted 2/11/2010 1:01 PM (GMT 0)
Hi, and yes i also had surgically induced remission and got 15 yrs remission out of it, but it eventually caught up with me again in 08. I probably may of still been in that remission if i had stayed on medication. Bev x
Posted 2/11/2010 2:18 PM (GMT 0)
I did not know that I had CD for about 12 years, I would have gut pain, i.e, pain in the ileocecal valve area (that is the epicenter of my CD), but the CD went undiagnosed. Suddenly it flared with fistula, since the discovery of fistula, I have been in constant flare controlled through hospitalization, prednisone and now remicade. There was brief one-year period in 2004-05, that I was symptom free-but I was on Pentasa. I think my disease has progressed far, so it is very unlikely that I can keep ever off meds, but there are some days where I feel normal. Otherwise, this thing is for the long haul.

Also, there seems to overwhelming evidence that CD returns even after surgery. It is just that Surgery might give anywhere between 1 to 5 years of relief or lot longer in some cases. In the long scheme of things, that is worth it. Five years of relief is five years of relief. But there is no Cure for CD, no causative evidence, so we are basically just treating symptoms.
Posted 2/11/2010 2:22 PM (GMT 0)
I have had Crohns for almost 35 years and I have had a mild case for most of that time. I have had 2 resections, and I think those happened because of my lack of compliance with maintainence meds. I am now a BIG proponent of maintainence meds because of the trauma I experienced not taking them and how long it took to get things back into remission. Good luck!
Posted 2/11/2010 6:16 PM (GMT 0)
When my husband's disease flares, it seems to get really bad. He doesn't have a case of CD that can remit without meds. It's the meds that kick him into remission - remicade to be particular. But when he's in remission, he is completely normal - normal stools, no real food allergies, no absorption issues, etc. But then boom, CD appears - it seems overnight - there's no simmering, no slightly flaring state - just bang horrible hospitalization worthy flare up. In fact, that's my biggest compliant about this illness - I think I'd prefer an illness that simmers constantly rather than these traumatic flare ups that change your life upside down within hours. It's the acute flare ups that my husband has that completely throws me for a loop, especially because he's on remicade already - what's next? I guess that would be surgery - but I think it affects a large portion of his colon, so that would not be good at all.

So, I live everyday, keeping my fingers crossed, and hoping that the ugly CD beast doesn't rear it's monstrous head or thorny tentacles of complications today.

:-)

PV
Posted 2/12/2010 1:29 AM (GMT 0)
@PV - This is gonna sound bad, but right now I'd be tempted to trade the simmering version for a version with accute flare ups/remissions :/ I'm probably wrong to and I would probably regret it if it ever really happened. At the moment I just feel a weary sense of inevitability, as though nothing will ever change, as though I will have this disease inside my body forever, causing not dramatic illness but a general malaise and lack of energy, which given my already sluggish personality, fills me with about as much get up and go as a student at a 9am lecture after a heavy night's drinking.

@Nanners - I thought the 6-MP was going to be my maintenance med. Until it stopped working. Oh well, still the biologics to try... =/

@Beave - I've always had symptoms, even if it was just diarrhoea. All my flare ups have been within the last five years I'd say. They're a bit tricky to describe. For about two years I had bad fevers, on and off: I'm not sure if these fevers were even caused by the Crohn's or not. Anyway, during that time I also had anaemia, weight loss, and wacky blood tests. (Wacky enough to get referred to a haematologist.) Last year I went through some bad times too, although nothing hospital-worthy. My illest times were during the fevers - I could barely walk when those were at their height. At least nowadays I can walk, but I do feel run down: yesterday a trip into town led to me having to lie down afterwards, I felt that exhausted :/

I think replying to this thread has tired me out too. For real... >.>

Thanks to everyone who replied :p
Posted 2/12/2010 2:03 AM (GMT 0)
after my first surgery, which was 1970 and involved removing 8ft of small intestine, then great for 6 yr's no med's nothing normal life, then 6 yr's later i thought it was a complete blockage, it took 24 hr's to pass gas, and then went away, again no med's, then off and on gas blockage's I would need pain med's, then I broke my jaw and required 2 surgeries to repair jaw, plates and wire jaw shut, that 1988, before my wire's were off my stomach was so bad i needed surgery tomove another foot, dr's said it was build up of scare tissue, fine good once again no med's. then 1991 i broke my neck, and same type of stomach pain again, but no med's. then 2005 I had scope and then dr's said and let me see pictures of resection area and sure enough very inflammed, my point is 1988 with the second resection was it actually flame of cd or scar tissue, my dr's said scar, but what i no now i think it was flame not scar, because i experience same pain in that area of resection, my issue now is it has held it's own in stomach but moved up throat and has come out as canker sores, now after all those years I'm on imuran and pred. would have i prevented all of this now by taking med's? more than likely i will say yes, stomach is mild cd but throat and mouth is some what concerning, I hate useing the word serious, so I'll stick to some what concerning, but I am on very strict diet, of 95% vegan, no green leafy or diary, is this too long?

Posted 2/12/2010 9:49 PM (GMT 0)
PV: Your husband's situation seems very similar to mine. I get sudden and acute flare, exactly as you described...boom, it hits and hits very very hard, severe pain, 11 on 1-10 scale, nausea, violent vomiting...which requires hospitalization, morphine, iv fluids, iv steroids, iv antibotics, and off-food for 1-5 days minimum. Now, I am on remi, it keeps me normal for the most part, but I thought I could get off Pred, which has not worked at all, I have now had two flares, which has required bumping pred from 5 mg to 25 mg. So...I am not a loss tooshakehead
Posted 2/12/2010 10:01 PM (GMT 0)
Iram:

I'm sorry to hear remicade alone isn't keeping you in remission. My husband also takes Canasa and Lialda in addition to remicade. Can you take those? Also, would entocort work for you instead of Prednisone? I hear that entocort has fewer systemic side effects than prednisone, and is nearly as effective. I'm not sure, but I think I recall that you said you were also dealing with osteoporosis because of steroid use - I'm so sorry you are facing that. Are there other meds like Entocort or Imuran that you can try to wean off the pred? The other thing to try is maybe pushing remicade to every 6 weeks, and maybe even doubling the dose of remicade. I think you need to talk to your GI and see what the options are.

(((Hugs))). It is always frustrating, and very scary when my husband is sick the way you are, and nothing seems to work. I hope you find the magic combination to bump your body back into remission soon. I hate to think of the day when Remicade stops working for my husband - fills me with absolute dread. Hang in there! Hopefully you'll get to remission soon. I'm keeping my fingers crossed for you.

PV
Posted 2/13/2010 12:50 AM (GMT 0)
There is a school of thought that basiscally comes down to "medicene is what we do while God heals the patient."
I have a friend doing research on spontaueous remission and so far in the study it is about 4%, but there are several caveats to that. Other studies range from 3-24.7%, but it depends on the disease they are studing.
Posted 2/15/2010 7:44 PM (GMT 0)
Dear PV,

Thanks for your message of wishes, much appreciate that. At times like this, we really need that support. Hope your hubby is feeling better or least has some good days. Now on the question of medication. Entocort, I have tried it, without much success, I might try and get back on it (very expensive meds). I am currently on Pentasa (2 tabs, 500 mg, 4 times, but I actually manage to take it only three times). My doctors are not convinced that they are working for me, but I they haven't taken me off it anyways. I am allergic to Immuran (severe acute pancreatitis), so I am basically reduced to Pred and Remi. I have an appt next month to see if they can bump my remicade and also space it every 6 weeks.

Yes, I have osteoporosis, full blown in the hips, I am on fosomax (generic version) and high doses of calcium and Vit D. I have not gotten up on the exercise part very much, CD does not allow one to work out much.

Two things I haven't tried...SCD Diet and Surgery. I am leaning towards SCD diet for starters...but traditionally this works for people with heavy D. In my case, pain, pain is the biggest biggest problem. Only thing that keeps pain away seems to be pred...

sad
Posted 2/15/2010 8:46 PM (GMT 0)
I was sick for a year and then one day I decided I was going to go off my meds, just so I could donate blood at a blood drive.

I didn't take any medication for 10 years.

I never considered myself sick for any of that time.

But most doctors don't like it that I've been med-free for that long.

I was told as a kid that it was all about maintaining a good quality of life.

I had a great one for a long time.

But during that time, I was waiting for it all to come back like an axe dangling above my head.

Even though I have a fistula now, I still don't feel like it's back because I just don't feel that sick.

Posted 5/1/2012 10:59 PM (GMT 0)

nicecupoftea,

    I just found your question by doing a google search on the subject.  I have had Crohn's for well over 20 years (48 now) and had a rough time with a lot of the meds that I was provided to begin with and found that I was just as well off without the meds and living with the continuous symptoms of the disease. 

  When before I would see a slight or short remission at times when I was sick or injured in some way.  I always viewed this as my immune system had something different to focus on rather than my intestines.  My doctors couldn't come up with anything better, for whatever reason about 9 months ago my symptoms stopped, it bothered me so much I went to the doctor to make sure that nothing more serious was going on.  He told me that I seemed to be healthy and just enjoy the break I have been given.  I never changed my diet or my habits for this to happen during the last 9 months I have seen maybe a total of 3-4 outbreaks lasting only a day or two (For the previous 20 years I would have that a week).  Only downside I have seen with it is I have gained about 20lbs.  I hope all is well with yourself like me but anytime you have unusual changes with CD I would recommend visiting the doctor if for nothing else but peace of mind.

Good Luck,

Mike

Posted 5/2/2012 12:05 AM (GMT 0)
Last year my CD went into remission spontaneously without any meds, diet etc. One week I just woke up & felt better. Then it just got great from there. It came back with a revenge a few months later & turned into this "over a year" flare. That was before DX though. Once it went spontaneously into remission I stopped seeking answers.
Posted 5/2/2012 2:35 AM (GMT 0)
I definitely believe that Crohn's can go into remission without drugs, but I do think that if there is some medication that can help maintain remission or induce remission, it makes sense to try to increase your odds of staying healthy. I take Pentasa, and there are studies that seem to indicate it is no better than placebo for Crohn's, yet I've had several long stretches of remission...so who knows if it's the Pentasa, or just my body?? I don't feel it's worth the risk to find out. Years ago before we had all of these new drugs, people with Crohn's weren't dying left and right that I know of. Just some thoughts
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