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Coming out of remission of Crohn's after 28 years

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Posted 2/4/2013 2:41 AM (GMT 0)
I was diognosed with Crohn's back in 1978 when l was 16yo. I had a bowel recession at 19yo where they removed 18'' of small bowel. I went into remission for 28 years up until 2 years ago where l suffered numerous serious tragedies which led to having a heart attack and a 6 way by-pass operation. This followed on with my Crohn's flaring up again.
I want to know if anyone has been in remission for a long period of time and that it has suddenly re appeared due to a change in their life.
Posted 2/4/2013 2:45 AM (GMT 0)
When I saw the thread title, I couldn't decide if you were lucky or unlucky... <_<

I guess the answer is now unlucky. Anyhow, I have heard of a few folks who had remissions for 20 years, but I think 28 years is the longest I've heard of, personally. Bad luck with your Crohn's returning on top of everything else :-/
Posted 2/4/2013 2:50 AM (GMT 0)
Wow! A 28 year remission is something I could only dream of. Stress triggers flares for me but certain medications do also. I got the worse flare to date from cholesterol medication. If you have been put on some new medications for the heart issue, it is possible this brought you out of remission in conjunction with all the stress in your life.

I hope you are feeling better soon!

Post Edited (pmedic) : 2/3/2013 8:06:31 PM (GMT-7)

Posted 2/4/2013 2:54 AM (GMT 0)
At least l am prepared for it. Diet, medication, signs of bowel obstructions etc.
If people want an accurate finding on what their Crohn's is up to, ask your GI for a Pill Cam. Amazing!
You swallow a pill which takes hundreds of pictures traveling down your bowel pin pointing exactly where the Crohn's is.
Posted 2/4/2013 3:07 AM (GMT 0)
Congrats on that 28yr remission Andrew. What a life, many can only dream of. :)

I've been offered the pill cam myself, but wasn't too comfortable with it for some reason lol

Were you able to see a point of view from your esophagus to rectum?
Posted 2/4/2013 4:04 AM (GMT 0)
Go the Pill cam, there was nothing to it. Everything is captured from the time it goes it to the time you crap it out. A comforting thought is that you don't have to retrieve the pill.
They first give you a dummy pill which will desolve if it gets lodged. Then you take the cam pill which will take approx 6 hours to go through your system. You wear a belt pack for the day which holds all the data.
Posted 2/4/2013 4:05 AM (GMT 0)
During those 28 years of remission, did you often experience diarrhea?  I heard that when long enought section of small bowel is removed, frequent bowel movement is very common. 
Posted 2/4/2013 4:09 AM (GMT 0)
Yeah with numerous bowel obstructions due to scar tissue. I averaged 3 - 4 motions soft even when l was in remission. had to take codeine to bind me up when l go anywhere a toilet is not assessable.
Had to stay away from high fiber diet as it makes the bowel work harder. people think its the other way around.
Posted 2/4/2013 11:16 AM (GMT 0)
Well I didn't make it 28 years but I did manage about 20 years of remission before crohns reared it's ugly head again. And I really feel it was because of a some very stressful stuff I was going through at the time. And the last 10 years have been a struggle to find the right meds to control this DD. I wish you luck getting back to "the good old days".
Posted 2/4/2013 2:26 PM (GMT 0)
Well, other than the age disparity at onset of our Crohn's you and I share a common and timely history, Andrew.

My symptoms first began in mid-1975, I was Dx'd in early 1976 at age 34. I had a resection of 18 inches of the mid-ileum in early 1978. And then was blessed w/a 20 year remission of my Crohn's.

However, diarrhea has not been a problem for me. I tend more to constipation. When my Crohn's did return in 1998 it returned in a mild form so that once I got started on Pentasa and then a few years later, Imuran, I pretty much remain in at least symptomatic remission, usually full remission.

Yeppers, it was a prolonged period of serious stress, not so much physical as emotional; working full time, caring for two elderly mothers, etc., etc., etc. A real rough time in my life.

I have "graduated" to a high grade partial obstruction at the old anastomosis and when I get some symptoms at times it is often difficult to determine if it is Crohn's activity or the partial obstruction causing the problems.

We've been two of the fortunate ones.

Posted 2/4/2013 3:45 PM (GMT 0)
Hey Andrew...similar story here. I had 18" resected in 1990 (emergent rupture repair) followed by very limited care over the last 22 years. Unfortunately, I am joining you in leaving remission---but not with all of the other issues you have had. It seems some new heart issues did kick up as I was heading into this flare. I think I just was so cautious those 22 years that I was able to remain in remission with limited meds and catching my diet when I had a twinge of something going wrong. For me this flare was a combination of eating poorly (several days of high fibre was a stupid thing to do), dehydration and I jsut think it was my time again. Stress did not help, but I dont blame it.
Hope things improve quickly for you.
Posted 2/4/2013 10:43 PM (GMT 0)
Similarities with a few of the stories here.
Diagnosed in 1979, age 13, lower bowel resection (17" removed) in the mid 90s. Had a wonderful 16 years of remission but a few years back I had issues with my blood, one being high cholesterol, low on B12, Etc.
As pmedic mentioned, I too had been given Crestor (for high cholesterol) and within 2 days wound up in the ER.

The Capsule Endoscopy procedure actually takes up to 50,000, give or take a few thousand, photos.
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