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Crohn's Disease
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Posted 1/27/2008 3:43 PM (GMT 0)
Morning all (from a newbie)! I am curious if anyone has any remission stories...such as how long they have been in remission, medicines taken or not, exercises, attitudes, etc.
I have had Crohn's for 20 years (wow that seems so long). I was really sick in the beginning (miserable), took lots of the usual pills, had many obstructions and finally had a small bowel resection in 1993. I declined "stabilizing" pills after the surgery because my doctor said that (at the time) there was no evidence that medicine would prevent a flare up. It was amazing the honesty from my doctor who was also a research scientist specializing in Crohn's. I haven't had a major problem since, sans one week long hospitalization and blood transfusion later linked to excessive ibuprofen (I took for sore muscles etc) irregular bowels and a few tiny "flares".
Anyhow, truth be known I live in a hidden world of Crohn's fear...the statistical truth that I should be terribly sick by know and have had more surgeries, and so on. Sometimes I just want to know that we can be Crohn's free (even for a short time) and that I am not alone. I have my own ideas as to why I potentially have been "lucky", if that is the correct word. Anybody else? Or am I just buying my time...?
Lastly, I am so happy I found this website. Crohn's is a horrible disease and can be depressing, isolating, agonizing and just plain ugly. Just because at this very moment I am not sick, I don't want to forget I ever was, that I can be tomorrow or that there are others who are hurting today. yeah
Posted 1/27/2008 4:54 PM (GMT 0)

Welcome to HealingWell. You have found a site filled with caring, supportive, nonjudgmental people. Feel free to post as you feel comfortable. You're going to love it here!
I am sure members will have remission stories for you. Stay with us and you will find tons of support.
Kitt

Posted 1/27/2008 5:01 PM (GMT 0)
Hi Coyotegirl, Welcome to HealingWell. I have been living with Crohn's for along time. I have also been in remission for over 2 years because of being on Remicade and Imuran plus the other meds that I am on. Remember one thing. We will always have Crohn's You just learn to live with it.
Posted 1/27/2008 7:18 PM (GMT 0)

I have been in remission since my one and only resection 12 years ago.  I was very ill for approx 3 years prior to the surgery (several partial obstructions, on prednisone for a whole year, etc.).  I was a very uptight person, but after the surgery, I mellowed out a lot, and I believe that helped.  I was on pentasa from surgery time until about two years ago.  My doctor retired and my new doctor was horrified that I had not had a colonoscopy since.  Had one two years ago, it showed mild inflammation (no symptoms!) so he has me on Imuran.  I saw him last week and he told me that there is no reason for me not to believe that I will live the rest of my life without another major flare.  My joints/muscles/bones ache almost constantly since the surgery - I feel like I am 110 year old almost all of the time.  All scans, blood tests come back clear, doctor says it is just the Crohn's and doesn't want to put me on prednisone for it (good thing since I have vowed never to go on it again!)  I do not worry about flaring again - even when I was sick - I had the "it can always be worse" attitude and I think that has always helped me along.  I am just happy to be on the planet.

Posted 1/27/2008 8:57 PM (GMT 0)
I had "controlled" crohn's since December of 2004 when I had my colon removed.  I hd no flares while I was on my medicationsl  My doctor said I would be in true remission when I'm off all medications.  I am glad to report I am now off all medications since September (I was on remicade, immuran, and prednisone).  I had surgery in November to remove my rectum (it wasn't diseased they  removed it since I can't get a j-pouch) so I was had to get off my meds.  I was a bit nervous but luckily no flare ups!

 

Posted 1/28/2008 1:02 AM (GMT 0)

Coyote Girl, 

  It is good to hear about your good fortune over the last 14 years or so.  I was diagnosed with Crohn's in 1973 (16 years old).  I had trouble for a year with the intestines (weight dropped to 89 punds) and some joint problems, but by the time I went finished college in 1978, I went into remission.  In the early 2000's, the disease was extremely active according to the colonoscopies, but I had no symptoms.  Three years ago, I officially was out of remission, not bad 25 years.  The only symptom  at the time was distension caused by stricture of the intestine.  Over the last three years, I've been on a number of drugs.  The only one that had actually worked was entocort which is not really recommended for long term use.  Unfortunately every time I drop entocort the distension comes back, the last time joints started hurting as well.   I started Humira last week with plans to get off some of the other drugs.  I can't compain, I haven't needed surgery and hope the new drug will take me back into remission and  hope you and everyone else on this site can have as much succes or luck as I have had.

I am a male on humira, entocort, azasan 225 mg, asacol 12 /day, and the usual vitamins.

Posted 1/28/2008 11:22 PM (GMT 0)
I was first diagnosed about 9 years ago. For the first year I was sicker than a dog. Then it just went away...for about 3 years. Until last Feb, I was on a continuous mild flare, but didn't really use that much medication. (Felt it was the acidophilious milk that put it in remission and kept it pretty mild). After the first year, I thought I really didn't have crohn's (it was a diagnosed only because my symptoms didn't fit anything else, and Prometheus testing wasn't really in use). I ate what I wanted (lots of fruit and veggies), ran a lot, got married...loved life.

I don't know why my body fell apart last year...I know what remission feels like...I want it so bad....want to go back to work...go back to life...Remicade hasn't given it to me yet, but I think I am getting better...

I hope you achieve that remission that is the holy grail for all.
Posted 1/28/2008 11:32 PM (GMT 0)
Well I have had Crohns for over 32 years. And once enjoyed a 20 year remission. During that time I took no maintainence meds. Would I do it again, NO WAY!! My remission ended with a emergency resection. So now I take only Asacol to keep things in check and it works well for me. I would consider myself in remission right now. I do have to watch my diet closely, and I too suffer with alot of joint pain all the time. You should take some kind of maintainence med to keep the inflammation down. I too suffer from the anxiety of this disease and fearing I will get sick again, but I think this is just me and not the disease. Hope things continue to go well for you.
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