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 have had UC for almost 11 years now (I'm 25) so I've been dealing with it for nearly half my life.
I have been lucky enough that the Asacol I started taking when I was diagnosed helped my disease fairly quickly and I was symptom free (while taking my meds). Over the years I have had 3 significant flares and many smaller insignificant ones.
Back in June I started feeling crappy (haha, pun intended) again and found it strange because I had been taking my Asacol. Because of the flare, I doubled my dose and found that it did nothing to help my symptoms. I went to my GI who put me on Imuran because he thought the Asacol wasn't cutting it for me anymore.
After two weeks on the Imuran I developed pancreatitis and had to stop taking it. I went back on the Asacol (double dose) and gradually got better.
September I started bleeding again.
But this time things feel different. I'm wondering if anyone has experienced the same thing.
When I was having a flare before the big problem for me (aside from the bloody diarrhea) was the pain. Awful cramping pain that left me bed ridden the majority of the time. NOW I find that I am not feeling as much pain, however I am experiencing the same amount of bleeding and more urgency. I have been fortunate to have never had an accident (thank god). But I am wondering if anyone else has experienced a change in their illness?
ALSO, I have been taking my Asacol again and am still having a flare. I went to my doctor and he said I was fine and gave me an appointment from a year from now. However I am still experiencing quite a bit of bleeding and uncomfortability. Which he knew.
Any dietary tricks and whatnot that work for you would be appreciated. I've never really had to avoid certain foods in my disease before. So any help you can give me would be great!!
(sorry for the book),
Rachel
I have been lucky enough that the Asacol I started taking when I was diagnosed helped my disease fairly quickly and I was symptom free (while taking my meds). Over the years I have had 3 significant flares and many smaller insignificant ones.
Back in June I started feeling crappy (haha, pun intended) again and found it strange because I had been taking my Asacol. Because of the flare, I doubled my dose and found that it did nothing to help my symptoms. I went to my GI who put me on Imuran because he thought the Asacol wasn't cutting it for me anymore.
After two weeks on the Imuran I developed pancreatitis and had to stop taking it. I went back on the Asacol (double dose) and gradually got better.
September I started bleeding again.
But this time things feel different. I'm wondering if anyone has experienced the same thing.
When I was having a flare before the big problem for me (aside from the bloody diarrhea) was the pain. Awful cramping pain that left me bed ridden the majority of the time. NOW I find that I am not feeling as much pain, however I am experiencing the same amount of bleeding and more urgency. I have been fortunate to have never had an accident (thank god). But I am wondering if anyone else has experienced a change in their illness?
ALSO, I have been taking my Asacol again and am still having a flare. I went to my doctor and he said I was fine and gave me an appointment from a year from now. However I am still experiencing quite a bit of bleeding and uncomfortability. Which he knew.
Any dietary tricks and whatnot that work for you would be appreciated. I've never really had to avoid certain foods in my disease before. So any help you can give me would be great!!
(sorry for the book),
Rachel
-
Look at what my best friend did with my picture!
-
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 told him everything 100% truthful. That I was experiencing a significant amount of bleeding and that I was having several trips to the bathroom. I explained the urgency and the changes I have found with my illness.. He called my symptoms "rumbling active UC",,
Told me that I was fine to continue my Asacol at a double dose and that he would see me in a year.
If my symptoms do not improve by the new year I will be going back for sure.
Please for sure contact him after the holidays. Hope things turn around!
I think we associate bloody stool as being normal sometimes and therefore something that we just have to tolerate. It's not normal and is a sign things are not right. If your body is responding to the meds, the bleeding should at least start slowing down as the meds start doing their job. Plus anemia is something that becomes a real concern.
I agree that you get proactive sooner than later. You deserve to feel well!
I agree with you, it seems like the bleeding for us has become something that just seems "normal".. and it's unfortunate that it doesn't seem to be something that feels scarier.
I talked to my mom on the phone tonight as well. I will be calling tomorrow and trying to get in to see my doctor in the new year. No need to wait any longer. I am lucky enough that I have been able to continue working so far, and I'd really like to keep it that way.
After my reaction to the Imuran I am really afraid to try a different medication. But I feel like the Asacol just isn't cutting it anymore. Especially since my double dose used to change things for me so fast.
Definitely ready to start feeling better again.