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found out i have ulcerative colitis

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Ulcerative Colitis
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Posted 2/8/2014 9:51 PM (GMT -5)
Hi
I found out 2 weeks ago i have ulcerative colitis. I am taking medication and supposed to have another colonoscopy in 3 months to see the progress and whether i have operation or not . My specialist told me if the blood in my stool didnt stop in 2 weeks then i should let her know. For the past 12 days the blood has stopped and the stool is forming and everything seemed good but when i go to toilet yesterday and today there was some blood in my stool. I have no stomach pains or diarreha and no constant urge to go to the toilet so im thinking should i be worried and contact specialist or wait for a few more days? I hope i dont sound stupid but i am terrified of having the operation and want to do whatever i can to avoid it . I am male 45 years and my dad has had chrones for 30 years.
Thank you
Posted 2/8/2014 9:58 PM (GMT -5)
Um....why would they tell you that if the one medication you tried doesn't work in three months you need to have an operation? That doesn't sound logical.
Posted 2/8/2014 10:23 PM (GMT -5)
What country are you in? That's crazy that they are talking about surgery so soon. Totally ridiculous actually. You need a new doc asap. There are literally tons of possible treatments before resorting to surgery. What medication are you taking?
Posted 2/8/2014 10:54 PM (GMT -5)
Thank you for writing, im in australia. Im only taking pentasa tablets and supposetory. I think i worded it wrong she told me she thinks the medication should work and maye wont need a operation but they did a biopsy and one of the cells looks cancerous so maybe she was talking about operation to stop that, im not sure. I have been told ulcerative colitis can become bowel cancer ? My gp told me i ha d haemeroids so being diagnosed with this was out of the blue. I think it is a mild case. Forgive me for my ignorance but i dont know anything about this disease.
Thank you
Posted 2/8/2014 10:58 PM (GMT -5)
I agree with the posts above me, there are far too many medications to attempt before surgery is even mentioned. Surgery is permanent, so please make sure you do some research before making such an important decision. Please keep us posted.
Posted 2/9/2014 6:58 AM (GMT -5)
In 1986 I was in the hospital for 3 weeks getting transfusions & not getting better.I was transferred to mass general in Boston for surgery.The gi's wanted to try other meds so they put surgery off.I never had surgery and am doing well.Point is don't ever rush to any surgery.Good luck & be strong.
Posted 2/9/2014 8:24 AM (GMT -5)
UC patients have a slightly higher risk of colon cancer but I have never heard of anyone diagnosed with both UC and colon cancer right out of the gate. The colon cancer rate is actually just a little higher than the general population and it is usually diagnosed about 12 - 20 years after your UC diagnosis, if it happens at all. I really think your doctor is a moron. Assuming for the sake of argument that your biopsy actually does show cancer, it would probably be best to have the surgery, even if your UC gets better. If your biopsy does not show cancer it is foolish to even talk about at this stage. You've already got two strikes against you because of your own lack of knowledge and in having an idiot for a doctor. You can take those two strikes away by learning more yourself and hopefully you can change doctors.
Posted 2/9/2014 8:43 AM (GMT -5)
Yes, do as your doctor said and call him or her and tell them what you just told us about the bleeding. I know youre scared but dying would be worse. Youre probably fine but just call and see what she says.
Posted 2/9/2014 9:00 AM (GMT -5)
"Agreed, the problem with surgery is one you choose it, there's no turning back. I for example chose j-pouch surgery and am very unhappy with the results. So what can I do now? The other options such as a bag or k-pouch are too freakish for me. I'd rather grin and bear my j-pouch. Nobody will do a colon transplant either, so that's not an option either. Whereas you can try a million different diets and medications now, especially since you can look around the internet and find them. For example on this site, I noticed something as crazy as a nicotine patch has brought relief to some people."


much better woof man :-)
Posted 2/9/2014 10:38 AM (GMT -5)
Yeah Gary... unbannables post is MUCH better. That is a sound argument for the "other side."
Im with soy, much better woof.

As for the OP, please take advantage of the Resources thread posted at the top of the UC message boards. There is a lot of information to read through when you are first diagnosed. Also the CCFA website is a great place to start. And also talks about all the different meds to try.

We are here for support and advice... but it will be easier for you and us of you get some reading in and have more information. You have this disease for life, so might as well get familiar with it :)
Posted 2/9/2014 11:36 AM (GMT -5)
Usually the process of treating follows these steps:

1. 5ASA's/mesalamine. A few are Asacol, Lialda, Colazal. Also rectal meds like rowasa.

2. Immunosuppressants. Mercaptopurine/6mp, Imuran.

3. Biologics. Humira, Cimzia, Remicaide.

4. Surgery to remove colon.

Sprinkled throughout all those maintenance treatments will be courses of prednisone to treat a colitis flare.

Unless I had colon cancer, I wouldn't have my colon removed three months after my diagnosis.

ETA: Also I do believe that I will have surgery SOMEDAY. I'm 34 though so my goal is to push back surgery by another 30 years. :)
Posted 2/9/2014 3:44 PM (GMT -5)
Technically a person could have colon cancer even if they haven't had colitis (inflammation in the colon) for very long, or at all, some people just have really bad luck, besides which, colon cancer doesn't only happen to those with an IBD that is affecting their colon...being one way to look at this situation. Generally though colon cancer has an increased risk especially after every decade of severe IBD, the risk of colon cancer goes up slightly each decade that one had severe active disease in their colon. But that's not 100% either, I've had active CD in my colon (crohn's colitis) with no remission for 23 years and I recently just got scope and there are no signs of colon cancer for me at this point.
Posted 2/9/2014 7:55 PM (GMT -5)
Thank you to everyone for your positive advice i really appreciate it. Its good to know you are here .
Posted 2/9/2014 8:30 PM (GMT -5)
Yeah, too much to try before jumping to something you can't reverse. Some of the UC's will respond to meds... I bled for over 10 years straight. Still do. Mine sucks but I made the choice to keep this stupid colon and it has robbed me of alot of life. You may not have to go through all of that so keep running through the meds first and see how yours responds.
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