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New UC Patient

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Ulcerative Colitis
How often does UC inconvenience your life?
A few times a day - 50.0% - 3 votes
Once a day - 0.0% - 0 votes
Once every couple days - 16.7% - 1 votes
Once a week - 0.0% - 0 votes
Once a month - 0.0% - 0 votes
Rarely - 33.3% - 2 votes
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gacel610
New Member
Joined : Jan 2021
Posts : 4
Posted 1/24/2021 6:15 AM (GMT -7)
Hi everyone, I just got out the hospital with a diagnosis of UC. At 26 years old, it’s pretty upsetting news but it’s awesome to see a community of people who support eachother. Do any of you guys have an solid advice or suggestions for someone who has no clue what they’re dealing with yet?
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Michelejc
Forum Moderator
Joined : Jan 2011
Posts : 2585
Posted 1/24/2021 7:25 AM (GMT -7)
Welcome. Keep a food journal on what foods bother you and what foods are ok. Keep as much stress out of your life that you can.
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Bloom93
Regular Member
Joined : May 2012
Posts : 350
Posted 1/24/2021 10:38 AM (GMT -7)
Hi,
Sorry to say Hi here!
Welcome to UC forum!
For most- UC has 2 faces -an Active /flare up face and a Sleeping/Remission Face.
To answer your question: For my DD- I would say during flare up- it is an ongoing nuisance that limits her daily activities including work and food.
Now that she is in remission - it is as if she doesn't have any UC !!

You being young and in your first flare please do everything to control the flare and be under the basic medications like mesalamines. As Michelejc suggested keeping a food journal and tracking your symptoms could help you figure out your trigger factors.

Best wishes..
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Jane974
Regular Member
Joined : Feb 2017
Posts : 418
Posted 1/24/2021 10:41 AM (GMT -7)
Hello. yeah, I second the food journal. Also invest in a good probiotic (e.g., visbiome etc) and try some of the diets that are recommended for UC (check out the AID-IBD diet). Dairy, gluten and processed foods can be difficult for many people with UC so try cutting out certain culprits.

What meds are you on?

Post Edited (Jane974) : 1/24/2021 10:46:40 AM (GMT-7)

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quincy
Elite Member
Joined : May 2003
Posts : 32567
Posted 1/24/2021 11:40 AM (GMT -7)
Hi...welcome to the forum.

What's the location extent of your UC, what exactly are your symptoms, and what meds are you on?

My suggestions are...

- A food journal is good, but it doesn't mean eating something now gives you symptoms now or that you eliminate it in an hour.

- Eat as balanced as you can and understand food's normal action in the digestive tract. Some are good to avoid and add during certain phases of flaring.

- Don't assume food causes flares, and don't get into the crazy phase of believing everything you read regarding extremes. Find your way. Triggers, a common word used, should be replaced with symptoms and actual relation to food. But that all takes time to understand. Going through being confused phases is pretty much a norm....common sense eventually works its way to the cognitive.

- Don't believe you can fix this quickly or control it.

- Get really smart about how UC works and what your UC symptoms are and mean. The only way that happens is to pay attention to symptoms, how you heal etc. Don't think worst case scenario are your only symptoms of a flare...there are inflammation degrees and each can hold itsmown symptoms. Understand how your meds work. Takes experience...years probably.

- Keep a list of questions for your doctor. Get ALL the results of blood tests and procedures.

- ask questions here, and you will get a variety of feedback.

**Get on rectal meds....

Done for now,
q
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FlowersGal
Veteran Member
Joined : Feb 2017
Posts : 916
Posted 1/24/2021 4:24 PM (GMT -7)
So sorry! Active flares are a nightmare and kept me almost housebound. That being said there is hope.

Hit your flare as hard as you can. Don’t let fear of medications keep you in a miserable flare longer than necessary. You’ll probably want to limit foods while in a flare — only because your gut lining is sensitive and raw and some foods can irritate it even further. Bland foods are best. Avoid raw veggies and anything spicy or with too much fiber.

Good luck! Are you currently on any meds?
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Old Hat
Veteran Member
Joined : Feb 2007
Posts : 5457
Posted 1/25/2021 3:45 PM (GMT -7)
Hello & Welcome to the UC Forum! There's an overwhelming amount of info about UC to digest, so I'd recommend a look at the Website of the Crohn's & Colitis Foundation to start. (It was founded ca. 1966-7 by gastroenterologists & patients at Mt. Sinai Med Center in NYC.) See also the Mayo Clinic Online for basic info under Diseases/Treatments. Quincy has already posted very valuable suggestions here for you!!!!! Although I myself joined this forum as an already experienced patient with left-sided UC, who finally achieved lengthy remission via a drug trial my gastro conducted in 2002-3, I quickly found Quincy to be a reliable & supportive "sounding board" for most members posting here about UC & related health issues. *** Generally-speaking, options & treatment for managing UC has improved a lot since we were diagnosed in 1970s-80s; if you find a knowledgeable gastroenterologist who will "partner" with you to devise a reasonable, helpful plan for continuing care, you'll do well at resuming daily life with minimal disruption to your usual activities. This doesn't happen overnight, but with good basic info you'll learn and adapt in good time. Try to stay positive and rest whenever your body feels the need. / Old Hat (40 yrs with left-sided UC; in remission taking Colazal)
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D.Brasco
Regular Member
Joined : Apr 2014
Posts : 72
Posted 1/26/2021 11:46 PM (GMT -7)
all that everyone has said above.. plus
How are your sleeping habits? What about exercising? And as they said, keep stress at low level
Do get on rectal meds, they do wonders
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gacel610
New Member
Joined : Jan 2021
Posts : 4
Posted 1/27/2021 7:15 AM (GMT -7)
Man sorry I can’t reply to everyone I just came here and saw all these amazing recommendations. So much info to take in I don’t know where to start. So far I have been taking mesalamine and prednisone and that seems to be keeping the pain at a minimum. Still having some strange bowel movements. But the pain has been regulated to a certain extent which has brought much peace.
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quincy
Elite Member
Joined : May 2003
Posts : 32567
Posted 1/27/2021 11:38 AM (GMT -7)
No need to answer everyone. Just answer the basics of disease location and exact symptoms.

q
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Casey_LB
Regular Member
Joined : Mar 2015
Posts : 298
Posted 1/27/2021 6:47 PM (GMT -7)
gacel610,

Welcome, and sorry you're here. Not a club anyone wants to join.

Some advice:

#1. There are 100's of proposed therapies for UC. A lot are scams; others are completely unproven. You can find recommendations cure/treat UC by eating this food or that food, or by avoiding these kinds of foods, or take this herb or supplement, traditional Chinese medicine, probiotics, prebiotics, antibiotics, et cetera. Some of it may be harmless, but be careful not to get sucked into trying remedies not backed by empirical data. Because you can spend YEARS trying all these proposed remedies while your disease either doesn't improve or gets worse. I don't doubt that some of the "folk remedies" may work for some, but probably not for most. Focus on the highest probability approaches, the ones backed by data. What out for "Dr. Google" since that guy can lead you down winding paths that are dead ends.

#2. Similarly, don't get too excited about legitimate scientific studies that are either based on animals, or very small samples of humans. You could fill your house with studies that show an effect on UC in mice, but which don't get replicated in humans. Or early studies that look promising in humans, that don't reproduce with larger populations. Focus on therapies that are proven effective in large-scale human trials.

#2. Listen to your gastroenterologist, and be proactive to contact them when things change, or if you're not improving. If you don't like your gastroenterologist, or don't trust them, get a second opinion from another gastroenterologist. Or a third. But stick with medical professionals.

#3. The standard approach in UC is "step therapy," starting off with one set of drugs (e.g., ASA's like mesalamine) and "stepping up" if those don't work to biologics. A lot of people fear the step up to what they perceive as "more powerful" drugs. But (in my opinion) step therapy is largely driven by insurance companies who want patients to try lower cost drugs first. Biologics work well for a lot of people, so if your initial therapies aren't working, don't be too hesitant to "step up". Assuming you have insurance, since the unreimbursed cost of some these can be $10K's per year. A lot of UC patients are worried about the side effects of "stronger" drugs, but my impression is that side effects are pretty rare (and reversible) with most UC medications. I'd say the exception is prednizone, which has a reputation of giving a lot of people unpleasant side effects. But steroids work well for many as a temporary treatment.

#4. Everybody's UC is different. Nothing works for everyone. And what works for you in 2021 might not work in 2025. If you're lucky, you'll quickly find a therapy that works; many do. Or you may go through a dozen medications before you find one that gets you to remission. It's a crap shoot. But just because nothing has worked yet, doesn't mean the next therapy won't make a huge difference.

#5. Again, everybody's different, but I would recommend that you not "hide" your disease. It can feel embarrassing, since your friends and neighbors probably don't want to hear about your bowel problems. Not everyone is understanding, and very few will actually get what you're going through. But I think it is generally better to open with people about your condition, especially if it's going to effect how and when you interact with them. After I developed UC, I found out that several people I worked with closely had UC for years, and I never guessed. I wish I had known.
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