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kickboxer
Regular Member


Date Joined Sep 2007
Total Posts : 123
   Posted 3/3/2008 2:17 PM (GMT -7)   
Hey everyone. I think i asked this question before but I couldn't find it in the site search (which doesn't seem to be very helpful) .. Anyways I was just wondering for those of you out there who have had crohn's from say your 20's. Did the disease progress for you as time went by. As years go on do you find that you have more and more flare ups? Also have you noticed they increased in intensity the longer you've had the disease? I've tried to search for this information on the internet but I could only seem to find information on the progression of a single flare that was left untreated. I understand everybody has a different course for disease im just trying to get some real life examples. Thanks in advance!
VSL#3
Progressive - Calcium and Magnesium supplement
FibreSmart - fibre supplement
New Chapter Organics - Unbound Energy, Multivitamins


yogaprof
Veteran Member


Date Joined Apr 2006
Total Posts : 1665
   Posted 3/3/2008 3:44 PM (GMT -7)   
I think you will hear all different answers. I actually know folks who have one bad year and then all symptoms go away...you just don't hear about them here because they are not interested in crohns. many folks here are pretty ill, so they are more involved in conversation.
I am one of those who began this journey in middle age, so I am no help for your question; just wanted to throw in my 2 cents. yp
48 y/o woman.  Diagnosed 4/06 after colonscopy, SBFT, CT-scan all showed crohns. 3 months later, after pred and remicade, all tests showed no crohns. December '06 had adhesions cut through a laparoscopy. Now taking Glycolax, Ultra Fiber Plus, Florastor, and DHEA. Have become gluten-free diet per naturopath's tests.


MBJOH
Regular Member


Date Joined Mar 2007
Total Posts : 257
   Posted 3/4/2008 6:36 AM (GMT -7)   
I got crohns when I was 19, I am now 37. The only period of time that I felt really good was when I was pregnant with my only child. I had absolutely no crohns symptoms then. about six months after his birth the crohns came back and I have had problems ever since. The problems have varied, I had a perferation of my intestines which laned me in the hospital, I had a stricture of the terminal ilieum and had a resection, had ongoing D for years and the past couple of years have been dealing with rectal crohns. I am patiently waiting for my remission. MB

MikeB
Veteran Member


Date Joined Mar 2006
Total Posts : 1169
   Posted 3/4/2008 6:52 AM (GMT -7)   
There's just no way to say with certainty -- each case is different. There seems to be a subset of Crohns patients -- I have seen it estimated at 20% ro so -- who have fairly stable, unchanging disease throughout their lives. I seem to fit that mold, first symtoms at 19, diagnosed in 30s, 60 now and no real progression. Then there are others who have progressive complications related to fistulas, obstructions, etc. who require periodic surgeries. Overall it seems that if you have obstructive or fistulizing disease it's going to get worse -- or at least bounce from crisis to crisis -- whereas if you don't you may wind up having fairly constant non-progressive symptoms from now on.

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 3/4/2008 7:12 AM (GMT -7)   
I was diagnosed at 18. I had 2 flares in my first four years of having the disease and then enjoyed a 20 year remission where I barely even thought about Crohns. I could eat anything I wanted pretty much and took no Crohns meds. My remission ended with an emergency resection in 2002 due to a obstruction. I ended up having another resection 3 years later. My Crohns is now different, but that is because of the surgeries. I live on a low residue diet now all the time. But, my Crohns is pretty quiet. I consider myself to be in remission now. I do take Asacol to help keep things in control. That is one thing I personally recommend to anyone. You should always be on some kind of maintenance med all the time to help keep the inflammation down. I am sure if I had continued to take the Pentasa that the doctor wanted me to take years ago, I probably would not have had the surgeries. But that is just my opinion. I don't think my disease has gotten worse per se, but it has changed. But once again I think that is because of the resections. Hope that helps.
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


CrohnieYogi
Regular Member


Date Joined Oct 2006
Total Posts : 367
   Posted 3/4/2008 8:57 AM (GMT -7)   
I was diagnosed at 25, but had mild symptoms from the age of 20. I would say that while in a flare, my disease is moderate. Mostly it's mild. I am now 30 and I would categorize it the same, but it's not the same. My flares used to be signaled by numerous mouth sores followed by joint pain, then LRQ pain, nausea, fever, etc. Now there isn't much of a signal, it's just intense, dull pain and los of appitite. I'm glad the ulcers are gone, but now I have no warning system!

Everyone is different. I'm hoping that since things have been mild-moderate overall for the past 5-10 years, they will stay that way for the rest of my life. But who knows. Dr.s do say that if you're mild, you tend to stay that way. If you're not, you tend to stay that way as well. But there are some studies (there's a thread about one) that imply there are some therapies that may change the natural history of the disease. If that's the case, we're all in for a treat!

Doc2007
Regular Member


Date Joined Oct 2007
Total Posts : 294
   Posted 3/4/2008 9:33 AM (GMT -7)   

I was diagnosed at 15 after being sick from the time I was 14. I was sick for about 7 months then shortly after turning 15 I declined very rapidly and begin testing and such. I had a rough climb bakc up, because of Prednisone etc...Actually I was first diagnosed with UC then 10 months later diagnosed with Crohns by another doctor. I had a few slight flares after the initial diagnosis. then from 17 to 21 I had no symptoms. Flared again at 21yo then again at 23yo then just about every 15 months or so I have flared. I am now 28yo. I have not had a long run of remission yet. I am hoping to achieve that with 6 mp. At the 3 month mark going on month 4 on 6 mp. Everything is looking good accept for the occasional nausia and stomach upset like this morning. Then other morning I feel freaking fantastic!!! LOL Doctor is crossing his fingers that at 6 months I will be asymptomatic and be slowly tapering off of asacol. He says so far I am a poster boy for 6 mp because I have responded so well.


lamb61
Veteran Member


Date Joined Jan 2005
Total Posts : 1719
   Posted 3/4/2008 9:47 AM (GMT -7)   
I was dx at 21 after surgery to remove TI and some intestine. I had been sick and steadily losing weight for months. That was 26 years ago and for the most part, I've been pretty healthy. I've probably had 2 major flares in that period of time, the last one being the worst and longest. But I think if I had been on maintainence meds it might have been different. I'm doing "ok" right now, but keep having issues with my throat --- I was dx with cd in my esophagus 3 years ago.
 


kickboxer
Regular Member


Date Joined Sep 2007
Total Posts : 123
   Posted 3/4/2008 12:36 PM (GMT -7)   
Thank you all very much for your responses. I really appreciate you taking your time to answer my questions. :)
VSL#3
Progressive - Calcium and Magnesium supplement
FibreSmart - fibre supplement
New Chapter Organics - Unbound Energy, Multivitamins


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 3/4/2008 1:03 PM (GMT -7)   
Researchers have discovered a cluster of 9 different genes that contribute to the development of IBD and define the severity and behavior of the disease over time. Some of these genes encode factors involved in recognition and defense against bacteria. Mutations in immune response genes may adversely affect how the immune system reacts to harmless bacteria and this probably contributes to the development of IBD.

:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)

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