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For 2 years, I've never been in remission

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Ulcerative Colitis
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Posted 9/10/2009 2:36 AM (GMT 0)
I've finally concluded and accepted that for the past two years, since I was diagnosed, I've never been in remission.  My symptoms have been controlled more or less over periods of time but never in remission.  Unfortunately, my physical endurance, health, and emotional well being have also declined a great deal. 

I'm having a hard time even caring about trying anything new to help my UC or having hope anything will ever work.  My GI switched me to Colazol this week and I'm on a quick pred taper, second week, now, but don't see much difference in the 7-8 diahrea trips a day.  I've taken only 1/2 lomotil at most a few days instead of the previous 2 every single since I began this new regime, that's new.  This prednisone treatment and taper have been much worse than the one I did 18 months ago.  I know it's also messing with my head, but the bottom line is I was feeling pretty hopeless even before I began the prednisone. 

Plus I'm using Rowasa for the umpteenth time hoping it will start working instead of waking me up in the night for another trip to the bathroom.

Emotionally I'm feeling down and bitter.   UC is beating me.

Any empathy, sympathy, or upbeat thoughts will be greatly appreciated. 

 

Posted 9/10/2009 2:52 AM (GMT 0)
I am sorry you're feeling so bad. I was in a flare for over a year and finally got out of it with oral meds. I guess I have been lucky in that way but I don't have insurance so it's nearly impossible to get medication in a pricerange I can afford. It is hard for all of us and we all have our challenges. Have you had a colonoscopy lately? Is the inflammation in a certain part? If it's near the rectum, maybe you need to use more rectal meds? I have heard a lot of the oral meds don't reach the rectum. I hope you can find a solution quickly. Have you thought about remicade?
Posted 9/10/2009 2:54 AM (GMT 0)
     Know the feeling only too well.  Prednisone make me feel like that too.  There is hope...I am in remission and you can get there too!!!  Ask your doctor about Imuran or 6MP.

     What's that stuff you take listed at the bottom?  Metamucil wafers? Omeprazole?  I have my doubts about that spinach and sunflower diet.

     I started going to a chiropractor too.  May be a coincidence but ever since I started going to him I noticed improvement.  He never claimed to help UC but he works on the part of the spine where the nerve endings connect with the GI tract.  He also does acupuncture and laser treatments.  I intend to stick with these treatments, along with my meds for UC (off the prednisone, off Cort enemas and off

Canasa and down to six Colazal a day plus the 50 mgm of 6MP). 

     You sound so down and out...exactly how I was from Memorial Day up till three weeks ago.

     Good luck to you!!!  Tell yourself you WILL get well!!! 

Posted 9/10/2009 3:40 AM (GMT 0)
I can empathize with ya potatoe, I haven't seen remission in the entire 18 yrs I've had IBD.

:)
Posted 9/10/2009 6:37 PM (GMT 0)
Thanks for the replies, guys.  It helps to be reminded I'm not the only one dealing with everything brought on by this crappy (pun intended) disease.

Notsosickly, I've tried Rowasa maybe 5 times off and on, but it seems to increase diahrea and bleeding.  I've also been using hydrocortisone enemas off and on for 12 months, far too long IMO.  They got to the point of helping a few hours.  I needed off them so that's one reason for doing the prednisone and taper now.  My GI's NP wants me to think about Imuran next, but I'm reluctant because I think I may have liver problems already. 

Christine, I've followed some of your journey with this disease, and my heart is with you.  I'm so glad you've reached a good point.  It's like having a new life!  At least that's how I've felt during the short periods of more control of my UC.  So much to enjoy!  Right now the pred is really making things bad for me, on top of my discouragement.  I quit the spinach and sunflower diet a few months ago, haven't used the metamucil wafers for a couple of weeks, and the omeprazole is just generic prilosec, which I've been on for years.  It's probably something I want to discuss with my GI though.  (not sure why, but I changed my sig and it didn't take, so I'll try again) 

I think that dealing with my doctors (it's an HMO) and trying to get them to really listen is one of the biggest problems and stresses I have. 

pb, you are a shining spirit.

Thanks again guys.

     

 

Posted 9/10/2009 9:26 PM (GMT 0)
Hi there potoato,
you are singin' my sad song! I am back on pred. (40 mgs) and so far still in a pretty severe flare up. I am functioning, but that's about it! I feel that in just two weeks time my life is AGAIN turned upside down. I cannot take this sad, confused feeling that I get from the prednisone... it is worse than the UC itself. I am ready to taper off and let whatever will be, be! I just turned 50, and was diagnosed in 1991... a long road indeed. Strange thing is that I had been in a COMPLETE and wonderful remission for the past almost three years. I had forgotten how wonderful it is to be HEALTHY. Let's keep the faith that we will get through this one.... better days are ahead. Keep in touch....
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