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Ulcerative Colitis
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Posted 3/4/2008 1:14 AM (GMT 0)
Hello all.
Since being diagnosed the longest remission i have had has been 4 months. I also had one 3 month remission, and a couple of 1 month ones. I have had UC for about a year and 7 months now, and have been flaring for about 10 of those months, and in remission for maybe 9. I had that 4 month remission when put on colazal, and i really thought that was going to be my wonder drug, well it was for 4 months anyway. So i began flaring on jan. 6th this year, which is incidentally the same day i started flaring last year after my 3 month remission (weird huh?) I got on pred and was fine and tapering and all that, and then all of a sudden BAM when i was about to taper from 15 to 10 mg, the morning after i thought it would be a good idea to eat italian food and drink bloody mats in a restaurant I started bleeding again. Its been 3 weeks now. im back up to 30 mg of pred, being doing the cortifoam 2 x daily for 2 weeks, eating as carefullly as i possibly can, resting when im not at work, meditating.EVERYTHING and ANYTHING i can possibly do. And the bleeding just wont stop.
Im so scared. I feel like ive lost so much of my life, and myself to this disease, as well as the majority of my friendships.
its hard to feel like i have a future.
sorry this is not very uplifting. Does anyone have any advice?
Posted 3/4/2008 4:03 AM (GMT 0)
Winni - I'm so sorry and I hear exactly what you are saying. See my post a few threads down, Tell me it will be okay....please, and I am describing the same frustration, fright, anger, and a whole bunch of other emotions you must be going through right now too. It's awful to be on this yo-yo where we are fine for a few months and then bam out of no where we start flaring and it takes months again to go back to remission. It sounds like when you got down to 10-15 mgs of prednisone and started flaring again that your GI started upping your prednisone again and now you are back up to 30 mgs. For me, that never worked. For some reason, I usually have to start back with 60 mgs and work my way down. But that is just what I've learned now after the past 18 months which is why my GI doesn't want me doing that anymore and is suggesting 6-MP for me. For one, I can't keep doing these long prednisone cycles and they are not even holding me in remission for that long once I'm fully off. I wish I had some specific advice for you, but just know that there are others out there who understand your feelings.
Posted 3/4/2008 10:31 AM (GMT 0)
winni, have you tried the specific carbohydrate diet? it is difficult to adjust to, but i really believe in the science behind this diet. my daughter was diagnosed 13 mos. ago and has never been in remission, ended up in the hospital, etc. it has been quite a journey for us. when she is home i have her on the diet, but when she is away at school, i don't know what she is eating, how much sleep she's getting, how much water she's drinking, how much she is exercising, whether or not she is drinking alcohol, whether or not she is worrying, etc. i urge you to research every single thing you can find about uc and to take an active role in your treatments and your recovery. i can assure you that my heart goes out to you as you struggle with this horrible thing. i really, truly believe that you can get better. try everything that makes sense to you and has scientific evidence to back it up. don't give up.
Posted 3/4/2008 10:43 AM (GMT 0)
Winni,my best advice at this time,would be for you to try Azathioprine.It will be a few months before you see benefits,but if it works for you,you could achieve a very long lasting remission,possibly years.

Every avenue has to be explored with this disease,we all have different responses.Don't give up hope,there are so many meds for you to try yet,you'll find something that works eventually.
Posted 3/4/2008 8:06 PM (GMT 0)
i have would have to second that motion for the SCD diet. i have had great result with it, entering my 5th week of remission. i am eating nuts and hard cheeses now. who knew?

i am not taking any more meds as of last monday. i actually said goodbye to prednisone for the first time in a year.
Posted 3/6/2008 3:23 AM (GMT 0)
Thank you all for your responses. I am feeling much better today and yesterday. I think it all just builds up inside me (probably mostly in my gut!) and then just comes exploding out. Both physically and emotionally, so monday was a really bad day and i was in pain for all of it, but i am feeling much better now, and truly appreciate your words of encouragement.
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