Crohn's Disease & Ulcerative Colitis Support Group
Crohn's disease is a systemic inflammatory bowel disease (IBD) of unknown cause, that results in chronic inflammation of the intestinal tract. It can affect the entire gastrointestinal tract from mouth to anus, and can also cause complications outside of the gastrointestinal tract. There is no known medical or surgical cure for Crohn's disease, but there are many medical...
I just got back from my follow up appointment to discuss the results of November's colonoscopy. Dr. Z tells me he has good news which thrills me because my condition had worsened. He had mentioned 6mp and all sorts of different treatments that I really didn't want to go through with. So there I am thinking that the good news is that I can stick with the Lialda.
I was partially correct. Instead of three a day, I will be taking one a day from now on. Why take less, you may be wondering? Allow me to quote my doctor:
"You are now one of the 10-15% of patients whose UC clears up and goes away on it's own."
WHAT?! How? Are you kidding? Just like that?
"Well doctor, if there's nothing more I'd like to make this our shortest visit ever. Happy holidays and hopefully I won't be seeing you nearly as often anymore!"
I told my loved ones and offered to treat them to a celebratory dinner. One of my loved ones brought me back down to reality by reminding me that the best course of action now is to get a follow up. Damnit, he's right and I so don't want to go through another colonoscopy any time soon. The way I see it for news that great, it'd be worth it.
I hope you all are able to fully enjoy your holidays. I know the chances of this sort of thing happening to all of you are slim but I'm now thinking that any thing is possible. The UC just "going away on it's own" was never mentioned as a possibility and yet, it has happened for me. Keep your spirits up and I wish the best for you all :)
I was partially correct. Instead of three a day, I will be taking one a day from now on. Why take less, you may be wondering? Allow me to quote my doctor:
"You are now one of the 10-15% of patients whose UC clears up and goes away on it's own."
WHAT?! How? Are you kidding? Just like that?
"Well doctor, if there's nothing more I'd like to make this our shortest visit ever. Happy holidays and hopefully I won't be seeing you nearly as often anymore!"
I told my loved ones and offered to treat them to a celebratory dinner. One of my loved ones brought me back down to reality by reminding me that the best course of action now is to get a follow up. Damnit, he's right and I so don't want to go through another colonoscopy any time soon. The way I see it for news that great, it'd be worth it.
I hope you all are able to fully enjoy your holidays. I know the chances of this sort of thing happening to all of you are slim but I'm now thinking that any thing is possible. The UC just "going away on it's own" was never mentioned as a possibility and yet, it has happened for me. Keep your spirits up and I wish the best for you all :)
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Look at what my best friend did with my picture!
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We all have 24 hours in a day. How we spend these hours is important. Watching a little bit of a video about how sitting affects us made me aware of how much sitting and laying down I do. Gonna have to work on that.Your turn. Tell me another truth.
I've had a TERRIBLE year, after surgery for obstruction i had a stroke, a seizure and four abscesses on my teeth that they took 4 months to remove!!
FINALLY got the teeth out last week and I'm finally feeling like a human being a bit. Don't need babysitting by my Mum and can start to look forward to Xmas, not taking so many meds and spending time with my boys.
Also pain specialist said I was great and definitely not a junkie, which made me glow!!!
Come on anyone with good news, bring it on!
After only six colonoscopies (including the one up coming that I have yet to schedule, to confirm that the UC is gone), one round of prednisone, one job I had to leave, two insensitive managers (also have to mention the understanding bosses and professors!), the asacol, the lialda and only one experience with enema's.... I have been given the best news ever. There is hope that this disease is gone from my body and perhaps for good.
I still suffer from two other diseases and a plethora of other health conditions that go hand in hand with a piss poor immune system so I'm not out of the woods just yet. But damn does it feel good to say good bye to UC. I plan to remain with the UC support group.. forever. I will always be here wishing the best for you all, and meaning it with every shred of my being.
what a fantastic news!!! and I thank you so very much for sharing this great news with us as it is giving us so much hope. Can you take some time to tell me a bit more about your self , how long you had it , what was your treatments and is there anything you would like to share with us that you did and that maybe you think it might have help the process ,also maybe your diet... I totally understand if you don't want to go back there again so please feel free in refusing to talk about it again.
However I'm really happy for you and wish you all the best. I'll never stop believing in miracle. God bless you all!!
This is such a weird disease, how it impacts people so completely differently, the extent of the illness from person to person, how each of us responds individually to dietary changes or med changes, or both, how one day you feel like you're on death's door and the next, completely free of symptoms.
I'm really happy for you that you are doing so well!
and find other peoples mesages very helpful .
happy new year to you .
does anyone knows anything about a drug name CNI-1493. Is this new. I was surfing the net of course always for the same monster crohn and UC and happen to fall on this CNI-1493 drug. I'm not sure if it's old news or if it's a new research.
Thank you and happy new year everyone, Good health!!!! and let's stay positif, they're will be a cure! :)
http://www.wchstv.com/newsroom/healthyforlife/2206.shtml
go to the Healthy For Life Extra section.
And a PubMed article:
http://www.bioportfolio.com/LeadDiscovery/PubMed-010223.htm
that make it seem a recent discovery that's still being tested. The PubMed article suggests it will replace or at least supplement infliximab use. Apparently trials started in 2002. Wikipedia has a write up:
http://en.wikipedia.org/wiki/Semapimod
If it works well and is less troublesome than infliximab, that would be great.
nikyta: I don't mind sharing with you, or any one else for that matter. I usually worry about sharing the details with others because it makes them more uncomfortable than it makes me!
I was diagnosed with UC October 2004. Soon after my first colonoscopy I had my first and only really bad flare that lasted months. They've given me mesalamine enemas, prednisone, asacol and lialda. Never had to take more than 6 a day.
My diet seems to always be changing. Sometimes I can handle certain foods better than other times, odd I know. There are a few things my body can never tolerate though. Popcorn, oatmeal, milk, yogurt, ice cream (cheese doesn't bother me thankfully) and nuts. I know I'm forgetting some. Anything I eat right after I wake up will cause pain and send me straight to the bathroom. Which sucks, I love breakfast.
There is one thing I think may have had a hand in my remission. Almost two years ago my friend suggested I speak with my doctor about taking a b12 complex. He said it helped him with depression. My doctor gave the okay and I started taking it daily. March 2009 my primary doctor checked my folate and b12 levels, I'd been taking folic acid suppliments as well. She said my b12 was right on the money and to keep it up.
A week later I was watching Mystery Diagnosis and there was a woman that had terrible symptoms of IBS, vertigo, vision distortion (and temporary blindness but I've never suffered that thankfully) and a few other awful symptoms that she suffered for nearly two decades. Turns out her body didn't produce b12. They gave her injections and she improved immediately. I found it strange that my symptoms nearly mirrored hers and I began to get better (in relation to UC) after taking b12. Obviously this is just speculation and I haven't spoken with my doctor about my thoughts/findings yet. So of course I have to add the following disclaimer-
What works for me may not work for you, please do not begin or stop taking any medication or supplement without consulting your doctor first! =]
I'll keep you posted about what the doc says after I tell her my thoughts on b12!
amber- I'm glad my story could be a helpful one for you! Wow you've been dealing with UC for quite awhile. I'm sorry to hear that. I guess I was overly hopeful and misunderstood my doctor when he said it went away, he simply meant remission but I'm certainly not complainin hehe
I'm sure everyone here is very happy for you.May be this is what we need to hear the most HAPPY ENDING =D I know for my self,it gives me hope and God knows we all need it. I find most of the blogs so depressing which I understand pefectly as my self don't have anything good to write about this horrible disease but if one day life gives me a second chance,I will make sure to scream it on the top of my lungs hoping to send a message of hope. Thank you Katsumi and rmb !