Has your Crohn's changed over the years?

[ibdoer]

Hello to all. I had a follow up appontment with my DOC. He says I'm doing pretty well. Just to stay on the maintenance meds for now. Also gave me a script for some Hydrocortisone Suppositories which I hope will help.
Anyway, I was talking with him about a long term outlook. He told me in most cases, "what you get is what you stay with".
Is this usually true for most of you? Does Crohns tend to get better or worse through the years, or does it usually stay the same?
I have read in many articles that auto-immune diseases tend to die off with age. Anyone have any input?
Thanks.

 

[CrohnsHobo]

For me it has been peaks and valleys. I assume it is the same for many. I had a low point, then got into remission and was just on maintenance drugs for many years without problems, then I got sick again, and got sicker, and now I am starting to feel better again.

 

[imisspopcorn]

Mine has escalated over the years....I had a really long period of remission due to pregnancy.....I wasn't on strong meds at the time though. I hope it calms down as I get older, but I'm already middle aged???

 

[alexandros8]

Mine has also gotten worse since diagnosis, or more aggressive as the doc puts it. The changes have actually been all in the last year. For the first 8 or so years it stayed relatively the same.

However, I had a really good 2nd opinion with a doc out of Emory University who told me that new research is showing that if you are diagnosed early (teens/twenties), the disease actually peaks at some point and then gets better (or possibly goes away) as you get older.

Something to hope for!!!

 

[Crohn's 35]

It is said to be a young persons disease, and supposed to settle when you are in your 60's but who knows, I am not there for quite some time but I have noticed it not as severe when I first got dx at 32. Still have flares, just different places. UP and down like a roller coaster.

 

[cwf5020]

Mines been like a roller coaster. I was diagnosed when I was 16, had a resection at 17. I went into remission for while just on Pentasa after that. I had a couple flare ups, but nothing major. Now it seems to be back in full force, Im now 22.

 

[Nyx]

Mine has been agressive to say the least. I was diagnosed in 2006, got it under control for 2 years, and then all hell broke loose! I just went from bad to worse, and just recently had an emergency colostomy. Turned out to be the best thing that's ever happened to me however. I'm hoping most of my problems are over now (wishful thinking??) as I'm not on any meds and have absolutely no problems!

Seems everyone is different...

Cindy

 

[Mountaingem]

Mine moves to different parts of the bowel-it started in rectum, then moved to illium, then back to rectal/anal area. It also began attacking my joints/spine/eyes as well. Doo Dah!

 

[Kacey]

Mine was pretty mild at diagnosis, about 7 years ago, I was 21. I've only been in full remission a few times, here and there. Always have signs of it, in blodd work, colonscopies etc... but not out of control... It never felt really terrible. But it is now progressing, new symptoms, more aggressive. So we shall see...

 

[Cog]

I have had Crohn's now for 28 years and it has always been up and down I did have 5 years of true remission after a colectomy. At the moment it is up and down the good news for me is that I can bring it under control faster and be more pro-active. May be this is why the medical profession think it is better controlled in later years I love science

 

[mharvey90]

I was diagnosed at age 9 in 2000, with very severe symptoms that I remember having my entire life. Went into remission for 3 years, then had a resection when I was 12. After that surgery, I was almost completely symptom free for 7 years...from the age of 12 to 19. During that time I pretty much forgot that I had Crohns...and then I got really sick again in March of 2009, and have been very up and down since then. From what I hear from other people, I had an unusually long period of remission...most people don't go symptom free for a whole 7 years, so everyone is definitely different

 

[merrywidow]

pretty static since i had a stoma. have lots of episodes where i get excess mucus in my stump though

 

[krahsdnal]

I was diagnosed in 1986, and was in and out of remission for 18 years, went on Remicade and held everything (or so I thought) in check for the last 4 years. About 4 mos ago I started feeling worse and worse and it was time for surgery, there was one fistula that was identified. Surgery was a good thing, there were two more fistulas that had reattached them selves to the small bowel and the sigmoid colon had adhered itself to the baldder and had to be chisled off. I am still recovering and hope that I can go back to my 20 year cycle

 

[Jennjenn]

Over the last four years it has been like a roller coaster for me.

 

[Peaches]

I wonder if what the doctor meant was that the actual *type* of Crohn's that one starts with is what they stay with? After joining this forum it got me wondering if I'd have to deal with fistulas at some point as I have been very lucky so far not to have any. My disease has been about the same since I was diagnosed. I believe I am classified as moderate to severe. I have either been in or very close to remission over the last 6 years while being on Remicade. One of my OB nurses told me that autoimmune diseases tend to fade out as you get older. I'd like to think that but then why do some people (although I think it is rare) get things like this or psoriasis (my Mother didn't get this until she was in her late 60's) when they are older?

 

[Misty-Eyed]

The only real major change for me was the strictures about 10 years after I was diagnosed. Although they are meant to be just inflammation rather than scar tissue at the moment, they don't seem to be getting better or getting worse. I think there may be more patches of disease along my transverse colon where as it just used to be mainly the descending onwards.

 

[Pirate]

Yeah its changed. Its gotten more personal. Not as much D as there use to be, but have more pain that will hit out of the blue.
Plus its like some a$$ hole talking $h!t behind my back!!!

 

[Wiles]

For myself it gradually got worse over time. Before my surgery I was sick for 7 years and only in remission once for a couple of months while on remicade. Surgery gave me my life back and I've been going to school full time ever since.

 

[Caromel]

Ever since I was diagnosed with Crohn's at age 15 (I am now 22) I haven't noticed an increase in symtoms. In fact, I feel better every year. I don't have the up's and down's that many speak about. I hope I never have a downfall ever again. My sypmtoms were severe stomach pain, slight constipation, lack of energy and nausea. I haven't had those sypmtoms since I was 17. I believe my Crohn's hasn't become worse due to my passion for nutrtion, yoga, and meditation. At the time I was diagnosed my Crohn's was very mild and I've only had to visit my GI doctor every two years for a check up. I hope to wean myself off of Pentasa soon and attempt the Gerson Therapy. I refuse to be a slave to pills and this disease.

 

[pb]

In a nutshell my experience in the 22 years I've had it is it's gone back and forth from severe to moderate and I've never been in full remission....it's very individual with each patient, but as we get older with this disease for some it may get better while for others it may get worse, the reasons are because there are so many varying factors for each person and things change as we age on top of everything else. Medications stop working, we tinker around with diets and maybe the natural routes and other things like stopping exercise or starting exercise and our age can play a huge factor since hormones are strongly linked to IBD, and as we get older we produce less hormones.