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Ulcerative Colitis
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Posted 1/7/2017 10:45 PM (GMT 0)
Hi everyone around November 2015 I had a flexible sigmoidoscopy as I had symptoms of mucus and blood from the rectum since I quit smoking in Jan that year I was diagnosed with distal proctisitis and a biopsy showed crypt absesses and indeterminate colitis so I was put on pentasa suppositries and octasa orally ( take pentasa religiously but was useless at taking the orals found it made me bleed more and struggled keeping up - anyway suffered mucus and blood upto 20 times a day everydaysince ( no stool just go 2-4 times in the morning for that') -anyway since December he 7th I've had no blood or mucus at all like none at all no symptoms then today I've received a letter they want me to have a colonoscopy in two weeks time - my question is will this set things off again ??as I do not want anything to upset things as finally after two years my body feels normal again and I don't have to worry about going to he toilet
Posted 1/7/2017 11:34 PM (GMT 0)
What was their validation for doing another scope? Odd they would send you a letter telling you that you needed another one. Maybe it's a clerical error, especially since you aren't having symptoms. I'd call them. No need to do it if you're feeling okay.
Posted 1/8/2017 12:23 AM (GMT 0)
The new protocol seems to be that they want to verify treatment is working via colonoscopy as symptoms are not a reliable indicator. They did the same to me even though they originally told me I wouldn't need one for 8 years originally. I was feeling great at the time and was nervous to upset things but it was fine, didn't cause a flare.
Posted 1/8/2017 12:25 AM (GMT 0)
I'd cancel, unless there's ample justification for this colonoscopy. Scopes are used as a diagnostic when we're flaring and nothing is working. Scopes are used as a cancer screening after 10 years with IBD (or sooner if you have a family history of colorectal cancer, or have previously signs of dysplasia or pre-cancer).
Posted 1/8/2017 12:53 AM (GMT 0)
The reason I had a letter is the last time I saw my ibd nurse was End of September and at that time I was still getting the mucus everyday so she said she will speak to the gastroenterologist and they may send me for one so my nurse is unaware as it's only been just coming up to a month being symptom free I've not seen her since and the letter has just arrived ( probably such a long waiting list ) just worried it will set things off again or should I get it done as I've only ever had flexible sigmoidoscopy so there could be inflammation further up I'm unaware of - I just don't want to risk unsettling things again
Posted 1/8/2017 1:06 AM (GMT 0)
I'd say the risk of your uc symptoms worsening due to colonoscopy are very low. The prep and scope should at most mess with you for several days, normal (invasive process). Uc inflammation is likely immune-related so i don't see how a scope would set it off (rare but not impossible) ...
Posted 1/8/2017 1:21 AM (GMT 0)
Thanks for the replys - maybe I'm thinking too much into it-I am a worrier - I just feel if i told my nurse this she may think I'm just saying that my symptoms have gone so I don't have to get colonoscopy which is not the case this is why I came here for advise
Posted 1/8/2017 3:06 AM (GMT 0)
that last bit is way overthinking imagining what the nurse would think and all.

going from 20bm w/ blood to normal with only rectals is strange.

you need to know if there is still inflammation, or if it is higher up. the question is risk of colon cancer.
Posted 1/8/2017 9:14 AM (GMT 0)
Sorry I may not have explained correctly due to rushing my bm are relatively normal the upto 20 times a day was the urge to go but when I did it was small amounts of mucus sometimes with blood
Posted 1/8/2017 9:28 AM (GMT 0)
Hey upanxiety. I've only been in this UC game for a couple of years. But I'd be agreeing with ipoop, that the risk of a colonoscopy causing a flare being low. More of just being a hassle to go through, but I guess it's about what the rationale behind doing a scope while symptom free is? What are they looking for?
And to throw a curve ball in, when my inflammation was only limited to proctitis, All the prep for a colonoscopy, threw me into remission for 6 months. Was a bonus.
Posted 1/9/2017 7:56 PM (GMT 0)
Get chugs spoke with my nurse she advised me to postpone the appointment for the time being as all my blood tests and samples showed fine and my visible symptoms have gone she said sometimes the prep can set you back and she said if I start getting symptoms again I can just reschedule the reason for the scope was to see if anything else was going on as my symptoms at the time were not showing any signs of subsiding
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