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Longest remission.. and longest flare up

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Posted 2/12/2014 6:40 AM (GMT 0)
Hey, I am looking for some success stories because I am trying to stay positive with this disease.. It seems like everything I read on here is horror stories about going through every single medicine and ending up getting surgery.. and STILL having symptoms/complications after surgery. Most can't seem to get off the steroids either. I just really need some positive energy right now. I've had the disease on and off for about 6 and a half years now, with my longest remission being 3 and a half years (it was nice). So my question is to you guys... What was your longest remission and what kind of medication/diet helped you achieve that amazing remission? Do you know anyone who has sustained this disease for a long period of time without surgery or extensive steroid use (more than a year)? Thanks for the input
Posted 2/12/2014 1:58 PM (GMT 0)
I was diagnosed with CD in the colon in 2007 after having two massive rectal fistulas.  GI wanted to put me on remicade saying this is the only way to heal fistulas as large as I had.  I refused to have my immune system turned off and decided to try the SCD diet approach first.  After 7 months of fanatical dedication to the  diet and taking pentassa, both fistulas were healed and all my other symptoms like mucus and blood in my BMs were gone. 

To this day I am symptom free and have not had one flare or problem from my CD since 2007. I still follow the scd diet, but not as strict as before and the only drug I take is pentassa. 

Posted 2/12/2014 2:59 PM (GMT 0)
Health forums tend to attact the worst-luck cases, so try not to be too disheartened by what you read. My Crohn's was mild for 5 years after diagnosis, and it would never have occurred to me to join a Crohn's forum during that time. It wasn't until 2010, when I had already been ill for a few years and it was clear that nothing was working, that I enrolled. I wanted answers that I hadn't cared about when I was doing fine.

By way of contrast, my brother also has Crohn's. He's had it for a little longer than me (about 15 years), and has never been hospitalised or needed surgery. He's in remission most of the time; maintains on 5-ASAs and azathioprine and takes a course of steroids about once every two years. Apart from no longer eating very spicy food, he doesn't follow any special diet.

Most people with Crohn's do have periods of remissions. about 10% have a chronic, unremitting course: I was in that 10%, naturally. But I remember years ago talking to somebody who used to be an IBD nurse: she thought it strange that I was literally never in remission and that something else other than the Crohn's was going on. (It wasn't, but the point is I stood out as an unusual example.)

The internet draws in sob stories like manure draws in flies, but the reality is not as grim as all that. In fact there have been a few people on this forum who have had very long remissions: I'm talking about 20 years long. I can't really imagine a remission that long, but some people do have them.
Posted 2/12/2014 3:13 PM (GMT 0)
I was diagnosed with this disease 25 years ago this month. My longest bout of continuous remission was about 6 years while on Remicade + purinethol.

Other bouts of remission included several at just 6-24 months when first diagnosed...there weren't a lot of other effective drugs treatments at that time. So, I was on a cycle of steriods for 6-8 weeks, then a short-lived remission until the flare returned.

After the flare following the 6-year remission, I had a 2-year remission and a 4-year remission. The 4-year remission was just Pentasa and Purinethol.

I have had one surgery, but that was 22 years after my initial diagnosis to remove strictured parts of my bowel, including my terminal ileum. I've been in remission for the almost 3 years since that surgery, and have been on Humira since the surgery.
Posted 2/12/2014 4:08 PM (GMT 0)
I agree with what NCOT said - most people with success stories have little need to seek out extra support beyond their doctor. It's those who are still sick that are the ones researching and sharing, trying to find more ideas.
Posted 2/12/2014 6:40 PM (GMT 0)
Thanks for the replies.. interesting stuff. That makes a lot of sense. After this last colonoscopy on Feb. 5th (had a nasty flare but it only lasted about a month and a half) My doctor wants me on Remicade soon, how was Remicade for you Nicecupoftea? I currently am experiencing NO symptoms except occasional gas and that has been going on for the last week. I am completely tapered off of the steroids by tomorrow. In your opinion, should I continue on the Lialda and deny the Remicade since I am basically symptom free, OR should I get on the Remicade in hopes that it will keep me in remission for longer than I would be if I opted out? I know this is only opinion and everyone reacts differently, but I am still hesitant to go on the Remicade, because in my opinion, the less drugs I am taking, the better (as long as I am staying in remission).
Posted 2/12/2014 6:43 PM (GMT 0)
Actually that question was directed at clonehead about the Remicade, I must have gotten the names mixed up. Also... a 6 year remission sounds REAL nice right about now. lol
Posted 2/12/2014 11:28 PM (GMT 0)
My guts have been in clinical remission for 7 years now. I got there after I started Remicade. I have been on one anti-TNF med or another for all but one year of that. During the year off I remained in remission. Also, realize the last scope that showed any inflammation was mild. I was placed on Remicade for the severe inflammation in my joints. At that time Remicade was only given for severe cases of Crohn's. Now the anti-TNFs are more often prescribed at the time of diagnosis in the belief that aggressive treatment in the beginning will halt the inflammatory process easier and a better chance of remission.

Also, NCOT is correct about worse case scenarios more often here than in the general CD population. I have been on this forum for 13 years [I think]. I have been a moderator for 8 years. I read almost EVERY post. I have seen countless newly diagnosed patients come here. Many, many of them after finding the proper treatment go on to lead active normal lives with no need for this forum. Please don't stress too much. Stress has been shown to have a negative influence in those with CD.
Posted 2/13/2014 3:06 AM (GMT 0)

IBDisannoying said...
My doctor wants me on Remicade soon, how was Remicade for you Nicecupoftea?

Well, the good news is that I didn't get any side-effects from it.

The bad news is I was in hospital a month after starting it >.> The surgeons wanted to operate on me during that stay, but my GI argued for giving Remicade more time to work. I gave it a year and it did **** all.

However, my GI told me that he'd only known 3 other patients for whom Remicade hadn't worked. I think I was given Remicade too late for it to make any difference: 5 years earlier and it might have have worked; 10 years earlier and I'm convinced it would have worked. But by the time I got onto Remicade it was like trying to put out a fire with a water pistol.

From that point of view, I am tempted to tell you to go on the Remicade, especially as your last colonoscopy showed active disease. The steroids have put you into symptomatic remission, but not healed your mucosa, which is absolutely typical of steroids. Hopefully the Remicade will heal your colon and lead to a deeper remission. I said elsewhere that biologics have not reduced the rates of surgery and unfortunately that does seem to be true. However, that may partly be due to biologics just being prescribed too late: it's still standard practice to start with the crap stuff (5-ASAs are better for UC than for Crohn's) first and then painfully slowly work your way up through the gamut of meds.

I can see why it's done: for people with mild disease that is not going to get any worse, Remicade is overkill. Trouble is, people with mild disease that is going to get worse invariably go undertreated. Unfortunately, there really is quite the massive leap from 5-ASAs to the next class of meds: the immunesuppressants and biologics.

*sees time* Oops, I should be in bed by now. But yeah. Talk it over with your doctor again if you are still worried, but my inclination is to agree with him about going on Remicade.
Posted 2/13/2014 3:18 PM (GMT 0)
Well...I still go to a support group and occassionally visit here despite many long periods of remission.  I hope I can give you some positives!

1990-emergency resection for a ruptured terminal ileum - first time I ever heard of CD.  After a few months adjusting, I managed to get to a 10+ year remission.  All I did in those years was limit my fiber intake drastically and take Pentasa.

2001-flare up and went on prednisione for a couple of months.  Had another 10+months in what I consider remission (very limited gut pain, some exhaustion that I could work around and no major meds).  Still only on Pentasa...but I started getting more adventurous in eating (ooops for me)

2012-flare up with mini obstruction.  Could only get a mini time on pred or I think I would have kicked it sooner.  Still having some issues, but seem to be stabilizing this last week.

During all this time I worked full-time usually more than 40 hours a week.  From 1994-2011, I traveled for work regularly including two years of being away 3 out of 4 weeks a month.  I still am not on any major meds.   I have had a fistula but a minor one compared to others and my gallbladder had to go.  I consider myself a lucky chronnie and I also take less sick days than many people I know without a chronic illess.  My biggest lifestyle adjustment is controlling my D and being stricter on my diet (I eat pretty much no fruits, no veggies, very limited red meat and nothing that says more than 3g of fiber per serving).

This all sounds like bragging, but I really do want people to see that there are some CDers without the horrid effects that I hate seeing for others.  I do have flareups (most of you have heard my whine!), but I think I have a very "normal" life.

Posted 2/13/2014 6:55 PM (GMT 0)
Remicade worked great for me (until it didn't.) It put me in remission and also helped with my perianal fistula. It's the only drug I've taken to completely shut off that drainage. Throughout the duration of taking this drug, I also took martial arts & I believe the exercise really helped, too.

I've heard that a lot of doctors approach crohn's treatment differently than they did when I was first diagnosed. My doctors started on the least powerful drug and only moved up the "power" scale as the patient showed lack of response to their current regimen. I believe a lot of doctors now (and maybe even mine with new patients) start with the "big guns" and try to find the right biologic for patients.

Some of this has to do with studies that have thrown doubt onto the efficiacy of mesalamine in crohn's disease. Personally, I feel that mesalamine has had some positive impact on my disease in the past. Do you and your doctor believe that the Lialda is providing benefit or no benefit?
Posted 2/14/2014 4:18 AM (GMT 0)
I was diagnosed eight years ago this month. I went into remission about a year after diagnosis and stayed in remission for about two years. Then I had a flare that was bad for about a year, then remission for a little less than two years. My most recent flare has been going on since July 2012, and is significantly complicated by a number of other health issues.

I've been on Remicade since last April and really didn't think it was doing anything but making me terribly constipated... until this week when I realized that my nausea was starting to come back. I had to reschedule my infusion two weeks later than normal and nausea is one of my big symptoms. So at the very least, I think it's helping with that (it definitely hasn't put me in remission, as I had a colonoscopy in the fall and had active inflammation in my colon).
Posted 2/14/2014 4:46 AM (GMT 0)
I was diagnosed just last year with CD/Ulcerated Colitis (excuse spelling) I am currently on Lilada 4 pills a day and I have weekly bouts. God so far this has been a good week. I am on a low residue diet. No raw foods, no dairy and it does seem to help. It's very trying on the system especially mentally not only physically. At times I don't want to go to work because I am scared that one of those moments will occur. I can't talk to anyone about this because it is embarrassing to say the least. My GI doctor said I am in good medical condition for the 6MP but I have looked at it and I do not want that high amount of steroids in my system plus I have a compromised immune system. I just take each day as it is and follow the diet. No chocolate, no dairy, no raw foods not red meats... LOL OH WHAT FUN!!
Posted 2/14/2014 6:46 AM (GMT 0)
Thanks again for the responses.. I like the positive story Habshockeyfun! The one thing I am worried about is if my insurance covers the Remicade... I heard it was REALLY expensive... as in thousands of dollars per infusion.. I have not changed my diet very significantly like some of you, but I don't drink alcohol anymore except MAYBE once a month, don't ever eat popcorn, and I limit dairy and caffeine.. Fiber and fruits and vegetables are not limited unless I am flaring up. This is a terrible disease, but this forum is a nice place to go to see how others are dealing with it, and to do some research into how people react to medications/surgery.. My goal is to eventually know at least as much as a GI doctor! Today is my first day off of the prednisone, lets hope that I don't experience any symptoms for a long time.. It's risky being off the prednisone without anything but Lialda and probiotics keeping the disease at bay.
Posted 2/14/2014 1:58 PM (GMT 0)
My goal is to eventually know at least as much as a GI doctor!

That won't take long. *she said, cynically*
Posted 2/14/2014 4:10 PM (GMT 0)
I'm coming up on 12 years since diagnosis and have gotten a 4 year remission from Humira. I was given Remicade almost immediately after diagnosis, it took me about 2 years after my initial diagnosis to get into remission. After that I would flare after about a year or two of remission until finally 6 years in was put on Humira. The Humira worked great until my second child was born in '12 and I've been flaring to different degrees since then. I'm about to have my first surgery, a resection due to scar tissue in a little over a week and then hopefully I'll have a few good years. I also haven't used the dreaded pred since 2008 although I've been on entocort 4 times since the fall of 2012. The disease is frustrating at times but I haven't let it take my life over.
Posted 2/14/2014 5:10 PM (GMT 0)
My son, now 16, was diagnosed with Chrons at 12 years-old. He was not used to taking pills and I'm thankful for Remicade because it was more stressful to get all of the pills down (Colozal) and others my son was prescribed than it was/is to go in for his infusions every 8 weeks. I'm thankful that so far he's had 4 years, and counting, of success with Remicade. But, if you don't want the Remicaide, I'm also reading a book called 'Breaking the Vicious cycle by Elaine Gloria Gottschall),' and getting very good advice on diets that have helped (mostly with people with Celiac), but also Chrons and IBD patients. She advocates taking starches out of your diet for two weeks only and see how you feel. The book recommends nut flour to bake your breads and other carbs. My son is allergic to nuts, but, if the Remicade stops working, I plan to try her recommended recipes which include other gluten-free products that do not contain starches for him. Definitely I will try taking wheat and other starchy flours out of his diet for a short period of time.
Posted 7/12/2017 1:23 PM (GMT 0)

IBDisannoying said...
What was your longest remission and what kind of medication/diet helped you achieve that amazing remission?

It depends on how you would define "remission". There are various definitions such as clinical remission, microscopic remission, remission as defined by Crohn's Disease Activity Index less than 150, etc.

IBDisannoying said...
Do you know anyone who has sustained this disease for a long period of time without surgery or extensive steroid use (more than a year)?

I have had the CD for 24 years and was definitively diagnosed 23 years ago. So far I have avoided the use of steroid and have not had any surgery (I do not know how long it will last though). I am working 40 hours a week and my life goal is to retire as early as possible.
Posted 7/13/2017 2:46 PM (GMT 0)
I was dx in 2004.
Went through 2 yrs. of fissures, fistulas, abscesses, constant diarrhea, pain so bad I could barely breathe and lost 60 lbs. in under 5 months (thank God I was heavy to begin with)
During this time my GI doc tried every pill. At one time I was taking 32 pills a day. I kept working through this. 20 minute commute and would have to stop half way to go to bathroom.
Then I had surgery. Had 2 1/2 ft. large colon removed and lots of small intestine. Surgeon said how to tell how much it was all so swollen.
Still had pain and recurring fistulas.
Started on Remicade just over 10 yrs. ago.
REMISSION!! No more of any symptoms except chronic diarrhea. That will never go away due to length of intestines left. I use Imodium if I need 8+ hours relief, otherwise just know where bathrooms are.
No other symptoms.
there has been no side effects at all from the Remicade and I have been on it for over 10 yrs. now.
I used to live on this board, mostly just reading. So many things were happening to my body I came here for answers. I diagnosed my first fistula. Called my doc and told him I had one and he said "I'm sure you are right, but do you mind if I take a look?" Information from here gave me a sense of power and control and kept my fear in check.
I now only look in here a couple times a year just to find out if there has been a miracle cure. Ha Ha
Best of luck on your Journey...do not give up hope

PS my 2 foods that cause discomfort are watermelon and green olives...go figure!
Posted 7/13/2017 4:38 PM (GMT 0)
Please listen to the earlier posters - folks on forums likely fall into the smaller part of the "not doing so well" curve. I'm on here now because I'm currently going through the worst bout since my diagnosis.

I've been very lucky - diagnosed late in life (37ish) and my only symptom initially was intense stomach pain that lasted about 1 day followed by 1 day of feeling like I had been beat up, followed by feeling perfectly fine. My longest period of feeling absolutely nothing was about a year. The year prior to this last bout. If I weren't taking 16 pills a day, I would have had no idea I had Crohns.

You will hear some awful stories and if you read enough on the forum, you will get scared for the future. Don't! Everyone is different. You can be doing great and then suddenly be horrible, or you can have a resection and be completely "cured". Stay positive, you never know what the future holds.
Posted 2/12/2018 6:02 PM (GMT 0)
FEEL GREAT. & LUCKY!!! 15 years FULL remission of Crohns after surgery- Diagnosed at 16, I was hospitalized for blockage 1-2x a year for 7 years until surgery in 2003. I’m 36 now and still have no signs symptoms nor medications since 6” small intestine resection surgery. No issues since, I eat and drink everything!! I take No meds!!! I get a Colonoscopy every 3-4 years and they show no signs of reoccurrence besides minor inactive redness at reattachment site, which hasn’t changed since surgey. Doctors say I am a very rare success case and I should get on preventative medicine Humara or remicade to ensure it never comes back.. I chose to wing it and live life Normal without meds. My huge scar is my only reminder I have Crohn’s disease.

My question is.. How is this possible, what’s my secret? I’ve been on Adderal and now Vyvanse for Adult ADD since time of my surgery and drink a daily regiment of 2-3+ cups of coffee, 1 soda and 1-2 alcoholic night cap beverages..more on weekends ( which all cause soft / loose BM’s) . Could these “unhealthy” factors cause long term crohns remission? What ever it is I’m lucky!
Posted 2/12/2018 8:18 PM (GMT 0)
My dad has crohns he was advised by his doctor acouple years ago to take steroids, but my dad didnt feel that bad at the time so didnt take them, he cut out milk an thinks thats whats helped him,, although i think he must just be lactose intolerant, he tries to be healthy taking concotions from health shops but still eats unhealthy stuff, he is fine still so i dont know why the doctor suggested he take steroids and his doctor is also my doctor i mean my gi an he didnt suggest i take anything even though i had to have emergency surgery for my crohns because of perforation,,, seemed strange to me
Posted 10/2/2018 4:42 PM (GMT 0)
Next summer will mark my 30 year anniversary of being completely free of Crohn's symptoms (except for occasional loose stools and sore joints). I had quite severe but very restricted ileocecal disease. Had a resection in '89 and have been asymptomatic ever since. No maintenance meds.
Posted 10/2/2018 10:39 PM (GMT 0)
To add to my previous post: being free of Crohn's symptoms doesn't mean I've free of complications. During the time frame from 2000-2013 I would suffer from occasional bowel obstructions (BOs) and require hospitalization. The BOs were due to formation of abdominal adhesions secondary to the resection I had in '89. Usually the BOs would auto-resolve after about 3-4 days, but in 2013 I had one that lasted >7 days and ultimately required a laparotomy to lyse the adhesions. That laparotomy resulted the following year in a rather bad incisional hernia that required extensive and complex (and painful) abdominal wall reconstruction surgery.
But still, being Crohn's-free for almost 30 yrs has been a blessing and every day I'm thankful that I haven't had to endure the disease for so long. Because when it's bad, it's really bad.
I hope you're all doing better.
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