Community Forum

So I have been clinging to the idea that there is this place called Remissionland.  A mythical land in which after the perfect medical regime and food program I will feel like a human being.  Where I will have energy, enjoy eating, and will not have to nervously scan for the bathroom everywhere I go.  After a few months I am beginning to feel this place doesn't exist.  I am trying to stay hopeful and I am thankful for the fact that I feel better than I have- but I wonder does this Remmissionland exist?  Will we all get there? 

 Reply posted for asohn.

It does exist, but for how long no one knows.  I was diagnosed in 2005.  It took almost two years before I was able to be in remission.  You still have days where you might not feel well or have pain.  But they are nothing like when you are in a flare.  Even though I am in remission I still scan for bathrooms everywhere I go.  I'm just being proactive.  I still worry about when my remission will end, but you just take it one day at a time.  Once you are in remission embrace it.  Do all you can before you flare-up again.    Just remember it is out there and your day will come.  I've been where you are and I survived.  Didn't think I would, but I did.

 Reply posted for asohn.

I too am dreaming of remissionland and I don't believe it exists.  I was diagnosed in Oct. 2007.  I then had about 6 good months and have been feeling like crap since June 2008.  I'm on Pentasa, Mercap, and Prednisone for the Crohn's.  Then I'm on 2 more drugs for the high blood sugar caused by the steroids and 2 more for the osteoporosis causes by the steroids.  I survive by taking Vicodin.  I couldn't go to work without it.  As lousy as I feel, I read these boards and everyone seems to be worse.  I'm starting to think that just feeling lousy is good for people versus feeling horrible.  This disease is horrible.

 Reply posted for patman75.

It is a little piece of heaven right here on earth.  I'm not sure how long mine will last, 1 month, 6 mos, 6 years, but it was the 2nd worst battle of my lifetime.  (The first was working through life-threatening depression back in '99.)

I still have other issues that are being addressed, but to be able just to go to the bathroom and have any kind of BM is worth it. 

Psychologically, it feels like the heaviest of heavy burdens have been released from your mind, body and soul and you truly look at life and are thankful for the simple smile that comes to mind out of no where.

Please, please hang in there. 

 Reply posted for asohn.

Yes remissonland does exist, and it is wonderful.  With the correct diet and probiotics and other supplements that improve your bacteria flora you can find remission land.

 Reply posted for asohn.

I really hope it does exist. I'd like a one way ticket to it!! I'm taking 9 x 500mg pentasa a day, 3 mebeverine & 5 days ago I started 3 x 3mg budesonide (entocort) a day. I've been in a flare up for 6 months but was only diagnosed with the early stages of Crohn's disease in December. I tried prednisolone but after two weeks I was so jittery that I can to come off it (hence the budesonide). I haven't experinced any change since starting the budesonide, however it's only been 5 days so I'm keeping my fingers crossed. I relate to what you say - it would be great to feel at ease with myself again. Hope we get there soon.

 Reply posted for moose1109.

Hey Moose1109,

I was on 40 mg of prednisone and it took about a month before it really started kicking in. I was diagnosed with UC in 2007, and usually I would take pred when I got a flare and it worked fairly quickly. It seems to take longer now to become effective and because I have been on and off of it for so long, my dr. wants me to try Imuran or one of the other immunosuppresent drugs. He bumped up my Asacol to 8 tablets a day (was taking 6 previously). I'm also taking Caltrate 600-D. Right now I'm tapering by 10 mg a week...so on 30 and will soon go to 20. Because of my pattern of flaring in the Fall and Winter, with remissions happening in the Spring and Summer, I just held off on starting the Imuran...so hopefully I will continue to do well once I am totally off the prednisone.

 Reply posted for jn4025.

Hey there,

How long were you on Pred before you started feeling better?  How much were you on dosage wise?  I'm on 40 mg and 2 weeks and I am starting to get firmer stool but along comes the blood after I have a normal stool sample....Pred doesn't seem to be working as quick as I had hoped....am I just being impatiend??

 Reply posted for asohn.

Hi Asohn,

Try to hang in there...I know it's tough. You had replied to me recently on a post and since then I have been doing a lot better. I am weaning off prednisone and so far, so good. I tend to have a pattern of flaring really bad in the Fall and Winter, and then get remission in the Spring and Summer. I know from my past experience how wonderful you can feel when you are in remission. I feel like a whole new person and am enjoying each healthy day. I hope you get there soon...but I know that is the other frustrating part of these IBD diseases...not knowing when things will get better and for how long. Sending good thoughts your way

 Reply posted for asohn.

I am here right with you!!  I have had a flare for just over a month now.... I was taking entocort but it didn't work this time.  I am now on 40 mg of Prednisone and aBetnesol enema at night.  I started to feel better on the Prednisone after abut a week on it but the last couple of days I have been feeling terrible again.  I don't know what to do now. 

Maybe a trip to the hospital for some IV meds will get this disease into remission....never had to go before but now it may have to happen

 Reply posted for asohn.

I am here right with you!!  I have had a flare for just over a month now.... I was taking entocort but it didn't work this time.  I am now on 40 mg of Prednisone and aBetnesol enema at night.  I started to feel better on the Prednisone after abut a week on it but the last couple of days I have been feeling terrible again.  I don't know what to do now. 

Maybe a trip to the hospital for some IV meds will get this disease into remission....never had to go before but now it may have to happen