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Proctosigmoiditis to Left Sided Colitis

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Ulcerative Colitis
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Posted 4/3/2014 2:48 PM (GMT 0)
I have recently had my colonoscopy and the doctor told me that my proctosigmoiditis has spread to left sided colitis. I am gutted, where do I go from here?!

It wasn't supposed to spread, I have taken my medications religiously since I was diagnosed in 2009. I suspect that it spread years ago, because things became much worse before they became better a couple of years after my initial diagnosis and my flares have actually lessened in severity in the past 2 years. My last colonoscopy was in 2009, and now in 2014. How often should I have them done now that I am no longer dealing with only proctosigmoiditis?

I had a feeling it would spread, I'm just glad it didn't take the whole colon. Will it remain left sided if I take my medications and up the dose during flares?

This disease has taken so much from me, I'm tired of it.

I need a hug.
Posted 4/3/2014 2:53 PM (GMT 0)
UC is unpredictable; there's no telling if yours will spread or remain left-sided; no matter how faithful you are to meds. However, research indicates that staying on maintenance medication reduces the opportunity for flares, but it doesn't guarantee that. I'm a perfect example; 10 years of remission on maintenance meds followed by a 2 year flare that resulted in surgery. It's best not to worry about the change in your diagnosis, but to be faithful to your treatment program, which it sounds as if you are.
A giant hug to you!

Sue
Posted 4/3/2014 2:56 PM (GMT 0)
Ugh, big hugs to you. I know you feel like if you have fAithfully taken the meds...it has a lot of nerve to spread. I can't see your sig...do you take the enemas at all?
Posted 4/3/2014 2:56 PM (GMT 0)
(((Hugs)))) I'm so sorry! This illness is so unpredictable. Don't beat yourself up that it has spread despite your best efforts to take your meds and do your part to maintain your health. Your doctor will tell you how often you should be scoped. I'm sure it will depend on how active your disease is and how you are feeling, but it will probably be sooner than every 5 years. There's no way of knowing if it will spread farther or stay where it is. I hope it doesn't spread and that you can maintain good health. Hang in there!!!

Stef
Posted 4/3/2014 3:26 PM (GMT 0)
Thanks for your replies, they were realistic and reassuring. I know there's no telling of what's next, but that's what makes this disease so terrifying.

I guess I should be glad it hasn't spread further in half a decade.

As for my medications, I have done everything according to my doctor's orders. I will start on enemas this week, but I have taken them in the past. I reckon I'll need them for maintenance from this point on.

I appreciate your support Sue, HUC, and Stef.
Posted 4/3/2014 3:57 PM (GMT 0)
Why and if it will spread isn't understood very well and taking meds isn't proven to decrease the chance of spreading. Probably nothing you or your doctor could have done.

Severity of disease is a bigger problem and drugs definitely help control that and the chances of getting cancer. You are doing about as well as I am and I think we are both doing pretty well and should feel lucky.
Posted 4/3/2014 9:58 PM (GMT 0)
HUGS!!!
yeah
I think this little dude is dancing, but it kinda looks like a hug!
Posted 4/3/2014 10:47 PM (GMT 0)
Hugs to you. Sorry you got bad news after the scope, such a bum deal this whole mess is. Hopefully just a slight bump in meds (enemas) will get your inflammation beat back :-)
Posted 4/4/2014 4:27 AM (GMT 0)
You're right AZY, we are fairly lucky, things could be much worse. It just feels like this condition has partially wrecked my late teens and early 20s. It's just unfortunate and somewhat disheartening when you first find out that this curse had spread. All we can do is cross our fingers and take as many precautions as possible.

Thank you for the dancing figure C&C, I reckon it's huggable as can be.

I love the way you put it TMP, I will keep my chin up.

Thank you everyone, you calmed me down. We are in this together after all.

Much love.

<3
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