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Random Babbling and questions from a UC Parent

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Ulcerative Colitis
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Posted 10/4/2017 4:52 AM (GMT 0)
First off I want to thank this forum! I’d be lost without all of you!
I’m very new to UC, can you believe I had never heard of it?! My daughter was diagnosed with UC almost a year ago to the day, 20th Bday. It seems like each time we think she’s in remission the symptoms come back. Could be because she’s hard headed and stops doing her Enemas as soon as she feels better. My daughter has only seen blood in her stool/toilet twice. Once with her first flare and now again with this most recent one. I try telling her to do the enemas atleast twice a week when she’s feeling good. Okay, I’m babbling! Lol question: what’s considered mild UC? Does anyone have experience with just doing the Rowasa enemas a few times a week as maintenance? How long does symptom free need to be to count as remission?
Posted 10/4/2017 12:17 PM (GMT 0)
LOL babbling is ok we all do it smile In regards to mild UC, usually the GI will diagnose the severity of the disease via a colonoscopy checking the level of inflammation. As far as remission, this is from the CCFA...

"When ulcerative colitis treatment is effective, you can have prolonged periods of time without symptoms or active disease. When this happens, you're considered to be in remission, according to the Crohn’s & Colitis Foundation of America (CCFA).

“There’s no clinical definition of remission — it just means your medication is working," says Keith Sultan, MD, a gastroenterologist and assistant professor at the Hofstra North Shore-LIJ School of Medicine in Hempstead, N.Y.

For many people with ulcerative colitis, remission means that symptoms of the condition have improved to the point that they're no longer interfering with daily activities, according to research published in March 2014 in the journal Gastroenterology & Hepatology. However, remission doesn’t mean you no longer need treatment for ulcerative colitis."
Posted 10/4/2017 1:03 PM (GMT 0)
1.) "what’s considered mild UC?" Ulcerative Colitis is classified by Extent and by Severity as both can impact prognosis.

Severity is a measure of the inflammation seen and is either: mild, moderate, or severe.

Extent is how far the UC inflammation goes. Is it rectum only (proctitis), whole left-side (proctosigmoiditis) involvement, or whole large intestine involvement (pancolitis).

2.) "Does anyone have experience with just doing the Rowasa enemas a few times a week as maintenance?"

A daily medication is common with UC but what that is varies a lot based on severity, extent, etc. Often an oral mesalamine pill like lialda/asacol/apriso is taken for maintenance and that may or may not include a rectal-route medication like rowasa. Rowasa frequency can vary from daily, every other day, a few times a week, and some of don't take it all when doing well. However the oral pills are essential as a daily maintenance treatment.

3.) "How long does symptom free need to be to count as remission?
"

At least a couple months.
Posted 10/4/2017 1:16 PM (GMT 0)
Hello,

It is essential for your daughter to follow her doctor's medication plan. Different medications can become ineffective if they aren't taken regularly and/or not taken correctly. If your daughter doesnt want to continue taking medication when she is in remission, that could be an issue depending on the severity of her UC. She should discuss this with her doctor to determine if that is possible. I get that the daily medication can be a struggle, but it's something that once she gets into a routine, she wont notice it. Some people I know with UC have it mildly enough that they can have a good diet and limit stress that it is enough to keep the UC at bay. A lot of people on this forum, including me, are dependent on medication.

Typically her doctor will perform a colonoscopy and use biopsies and evaluate the inflammation he/she does or doesnt see to determine remission.
Posted 10/4/2017 8:08 PM (GMT 0)
Definitely she should be taking maintenance medication; whatever that is for her, it's different for all of us. The reason why it is important is that it keeps inflammation down; chronic inflammation can lead to colon cancer so it's best to follow the prescribed protocol.

Sue
Posted 10/5/2017 12:17 AM (GMT 0)
Thanks all 👍🏼 My daughter’s only scope found inflammation in the rectum and bottom portion of her colon. She was put on the enemas and they seemed to help. A few months later she flared again and was put on Uceris as well as the enemas. As soon as she starts feeling well she stops everything, then three months later FLARE. I’m going to encourage her to see her GI and mention those maintenance pills. I get it that she doesn’t want to take meds everyday, she’s young....but she has to come to terms with this being chronic. I guess time and maturity will help. I joined and will be sharing these with her! Hopefully she will join too
Posted 10/5/2017 12:21 AM (GMT 0)
Great name. I thought I was miss poopie.

A lot of people start off mild, some stay that way. When I was first diagnosed, they called it mild proctitis and said it was very unlikely to progress to anything more. I used Canasa nightly or as needed and things were great for quite some time... some people use these mild rectal meds long-term and continue to have results. I have a resistant case personally, not the norm.
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