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157 Patient Ulcerative Colitis Flare Survey Results

adam colitis

Adam (founder of iHaveUC)

BEFORE GETTING INTO THE RESPONSES FROM THE SURVEY, I want to thank everyone who is part of the Active Newsletter Group (ANG) who took time out of your day on Wednesday September 19th, 2012 to participate.  And especially for all of you who added a picture at the end of the survey.  I was able to add most of them, but one of the pictures came up black, so I apologize if that was yours.  Either way, the pictures submitted from some of the participants are included below in no particular order, so please don’t assume that the responses below match the picture that may be next to them.

For those of you who are new or old to the iHaveUC newsletter, I can’t thank you enough for your support and dedication to making these surveys a big success.  (If you are not on the newsletter, you may join here – Newsletter Sign Up)

To give you all some ideas of who took part in this survey, this month people from 16 different countries helped out.  Here is a list of the countries who were a part of the survey:

  • United States
  • United Kingdom
  • Canada
  • India
  • Ireland
  • France
  • United Arab Emirates
  • Russia
  • Sweden (whoever’s from Sweden, I want to come visit REAL BAD…in the summer!)
  • South Africa
  • Romania
  • Australia
  • Botswana
  • Denmark (Same thing for Denmark!)
  • Spain
  • Norway

Without further delay, here are the responses to the questions:

Question #1:

Please confirm that you have been diagnosed with Ulcerative Colitis.


  • 154 People:  I agree, meaning I have UC
  • 2 People:      I agree, and I’ve also had my colon removed
  • 1 Person:      I don’t agree, and I’m not sure why I’m taking this survey

Question #2:

I have also experienced at least 1 “active flare up” AFTER being diagnosed with UC.

  • 149 People:  I agree
  • 8 People:  Nope, I’ve never experienced an “active flare up” since I was diagnosed with UC. I sure hope this continues. (If you check this box off, we will assume that you’ve found remission after your initial diagnosis and active symptoms have never returned OR that you have had surgery.

Question #3:

Do you ever have false starts? (you think you’re starting a flare but you’re really not)

  • 77 People:  Yes
  • 41 People:  Not sure
  • 39 People:  No

Question #4:

What do you think TRIGGERS your UC flares? Is it always the same thing, or do different things trigger your colitis flares?

  • It is always the food and stress for me.
  • i always worry when school holidays comes up,if i’m gonna get anything it’s when my body thinks it can relax,it’s not even that i have kids at school anymore,i work in a school! The last two flares have been over christmas and easter holidays and my very first flare was during the summer holidays.
    Perhaps i should change my job!

Colitis Flare Survey Participant

  • Although my doctor always disagrees, my flares always coincide with a meal i clearly should not have eaten. Previous culprits include full on Xmas dinner and take away indian curry from a street stall.
  • Stress, menstral cycle, and certain foods- such as dairy
  • stress
  • Dairy Products
    Spicy Food
    Different things trigger my colitis flares. Sometimes when I avoid eating both dairy and spicy I still get a flare up.
  • Stress is a big trigger for me. Other than that if i have too much of fresh fruit and vegetables. I really have to keep a close watch on the amounts i have
  • I was diagnosed 1 year ago and certain foods will set it off.
    Milk products, caffine, wheat products (which are no longer in my diet) were the worst.
    It also seems that raw fruits and vegetables will aggravate it.
  • I have 4 stools a day that are usually 6 on the Bristol Stool scale. I have never had more than that except that over the last 3 months I have had to get up at night for a stool as well. i have not figured out if there is a trigger.
  • STRESS, I tend to get flares in the fall
  • I’m not really sure, I’ve only had 2, the main one which came to my diagnosis and one not too long afterward, but I’d put my money on my eating habits
  • Stress and diet choices (spicy foods, fatty meats, deep-fried foods, processed sugars usually lead to flare symptoms, so I stay away from them)
  • Stress, change of seasons and foods such as night shade vegies.
  • Stress and if I’ve picked up a bug and am run down.
  • STRESS!!!!
    the same thing every time. When I have an event in my life that is stressful, a flare can follow two weeks later.
    No matter what medical professionals say, stress is the ONLY contributing factor for me.
    My first flare was a month to the day that my husband had surgery for stage 4 cancer.
  • not sure

colitis flare survey 2

  • Stopping smoking! Flareups, One back in 2001. One in 2004. One in nov 2010 until sep 2011 and now I’m back smoking 4 a day since July 2012 all symptoms are now gone. Hmmm strange that. Had been taking Azacol and other forms of this ie Mezavant XL and Pentasa Enemas, I always thought the medication exacerbated my condition, was tired telling the consultant in the hopital of this, so when in hospital in July 2012 I was given Steroids (Prednisolone 6 per day) reducing one tablet per week until none to bring it under control and also given Imuran which I also stopped when the six weeks were up. Now all my motions are solid and I now have my life back. I don’t like smoking but if 4 a day does the trick then I’m prepared to do that for the quality of life I’ve got back. I’m very lucky to have an understanding partner too. Also I had to avoid a lot of food ie anything with bran in it but I also taking iron tablets and calcium chewing tablets which I think also help keep my UC at bay.
  • Caffeine stress and gluten and no mess don’t. Have insurance can’t afford meds
  • I think salad contributes to flares and also being upset. I have to watch what I eat and try to stay calm.
  • Extreme stress or upset.
  • I have only been dignosed 4 weeks ago so difficult to tell. But i think stress is a major factor.My work is stressfull and i,m sure is not helping. My diet has chnaged for the better.
  • was diagnosed in 2003 in Chile just after arriving from USA with a type of colitis called sigmoiditis (inflammation of the last part of the colon just before the rectum and had some mucous and little blood) and had just a 3 month treatment with a desinflammatory medication that left me back in health (given the a proper examination and evaluation from the GI doc)Then in 2011 just arriving from Chile to Canada (where I have to live because is not where I want to live) I started with EXACTLY the same symptoms as in 2003. But I had to go to the emergency room, because that was the option given to me by the Info Health number. Once in the ER I was misdiagnosed with TOURIST DIARRHEA since I was coming back from (I do not know what they think) being on vacation in a country where I WAS BORN, GREW UP and never had serious health problems.I was given a bombing of ANTI-BIOTICS that led me from urge to go 3-4 times to emergency to go up to 13 times a day of bloody, explosive diarrhea.So I think I had an induced Acute Ulcerative Colitis (all my left side colon) in only 1 week of taking antibiotics.Apart from all that I would say that STRESS of being away from my homeland triggers my GI problems. In both cases I was almost in the same situation: Feeling pressed to live in another country (emotional stress).I have had huge more stress than that in other situations and never had symptoms at all.
  • I don’t know what triggers the flares
  • Even if i take my meds and respect my diet now and the symptoms of flares do show up. But i can not tolerate at all coca cola or coffee. And if i feel well with my meds and try to reduce the dose of salofalk for example blood in the stool appears:(
  • If I eat something different or cross experimental zone, I see pink/blood spots in stool. It is completely controllable with food and sleep. I can see come back on next day.
  • Stress, corn, soy
  • it is usually big stress, which kind of shake my foundations (a very bad heartbreak, an argument with my parents…)
  • After I was diagnosed in July, I started Align probiotic and Asacol. Symptoms improved, but didn’t disappear. Condition has remained the same pretty much, sometimes better, sometimes worse.
  • I can usually link it to times when I’m extremely stressed, or certain foods (like popcorn, which I haven’t touched since then), thought I’ve been told by some doctors that nothing in particular triggers them.
  • Stress
  • Getting slack with meds always triggers a flare. If I am compliant, no flares.
    I suspect that Ensure and Boost make the bleeding worse. I also suspect that even though I am on a gluten-free diet, that the g-free grains aren’t helping end the flare. There is more blood when I eat pasta, rice, etc than if I just eat meat, veggies and fruit.
  • Different things but have been in a constant since last year. Under control now after being in hospital. Leaving today!!! :)
  • Yes, my job keeps me from eating for long periods of time, so I snack. Not so good…
  • Wheat always triggers me, and so does severe stress. Depending on how well I am, I could be triggered by a cold or a period.
  • Stress. Sometimes it’s a combination of stress and certain foods like maybe a bout of bad food and the diarrhea starts and the stress turns it into a full on flare.
  • Stress and eating

colitis flare survey person 2

  • Stress, anxiety, PMS, sugar
  • I am not sure… But playing with my meds has!
  • stress
    red meat
    change of seasons
  • mostly stress from school and work but it could also be from unhealthy food
  • menstrual period!!!
  • emotions, bad foods, cold medicines, antibiotics
  • Stress, alcohol. Only flared once due to a combination of these two.
  • Things that didn’t bother me before bothers me now.
  • Nothing really triggers it for me, its just random. Although after i eat some foods (mostly greasy foods) i text to feel crappier
  • Stress is number 1. Seems like when I am extremely stressed out, it happens. (After I had a baby, and over a wedding..)
  • I have had one major flare and was diagnosed 3 months ago. I was under a tremendous amount of stress. I really think this had a lot to do with my flare. My mom was very ill, job issues, economy was bad and affecting my husband’s business. Prior to this, I was running marathons, working, riding my horse, living at a very high level of health and happiness. Doctor’s thought that I had food poisoning (which has never been proven or dis-proven), but I ended up in hospital for 14 days and was diagnosed after endoscopy and colonoscopy. I thought I was gearing back up into the flare this past week, but I believe it was coming off of high doses of predisone that caused my stomach issues, as they went away after a few days without getting back on any meds.
  • If i lifted up some heavy things, it’s often going to be worse than usually.
    When I have to study a lot or working up to late. Also if i’ve got some stresses anywhere
  • I think the last two flares were triggered by (1) stress, and (2) lack of sleep over a one to two week period.
  • haven’t had one in 3 years and the only time I had it is when I went from Azocol to Colazol (balsalazide) until it started working fine. I take a minimum dose and not sure I actually need to take it now. I was taking 2 tabs a day with no flares but last visit to the doctor he said even though I am not flaring that I should take 6 tabs a day? I need to get a different opinion.
  • they tend to happen when I get really stressed out or have a lot of important things going on at that time.
  • Not always sure,,, stress ?
  • stress
    aspirin based medication
    and more stress
  • Different things at different times, but the main culprits are: antibiotics, stress, other illnesses, lack of sleep, and of course GOK (God Only Knows).
  • I have not been able to pinpoint one particular thing that triggers my flares. I believe that stress is always a big factor. I have also been able to determine that a flare is made worse by artificial sweeteners and gluten.
  • Stress is always a near instant trigger, along with certain types of foods
  • Not known
    I know I’ll get them bc of diet – if I eat sugar or drink coffee
  • Refined food like cake; sugar; fried food.I try to avoid these.
    Anxiety is also a trigger.
  • severe stress, eating potatoes and rice on a regular basis.

colitis flare survey 3 person

  • Always always STRESS!!!! if not that something I eat or hormonal changes are another factor!
  • Just diagnosed in July. Had my first severe flare the beginning of August. Not sure on triggers just yet, but something that has always given my gut trouble is breads and rolls when we eat out.
  • Don’t know do the same things eat the same stuff
  • Stress, diet (i try to stay on the SCD, but have had a few slip ups, and these seemed to trigger mild flares, especially if i have a beer or potatoes), antibiotics for anything, like a sinus infection, and i generally seem to flare the worst in the summer. usually from about June til August, i have a really hard time. i don’t know if it’s because i tend to mess up my diet around this time, or if it’s a seasonal allergy thing or what.
  • stress, milk, gluten, refined sugar, alcohol
  • No idea yet
  • coffee
    junk food
    etc..I wish I knew exactly what causes my flares, SO i CAN AVAOID THEM, but these3 things always activate my UC
  • Alcohol
  • Different things trigger mine
  • Certain foods especially worse when I am tired.
  • If I’m under alot of stress it almost always triggers a flare up. Heat tends to trigger flare ups for me also.
    Those are the main two now, but sometimes I will have a flare and have no idea what started it.
  • Not sure
  • stress and diet
  • STRESS. Certain foods. Large crowds. Places with no or limited access to bathrooms. Hormonal changes… the week leading up to my menstrual cycle is always a rough time.
  • Arthritis drugs ,anti-inflammatories in particular . Also ppi’s . Processed foods especially white sugar and flour .Since coming off prescription drugs and starting a much healthier diet the disease is no longer evident . And it was severe . I would be very interested to know how many of your members have taken anti inflammatory drugs , ppi’s , or other antacids for several years before the onset of u.c. I believe these drugs caused a lot of my digestive problems .I have ankylosing spondylitis which was diagnosed in 1980 , the u.c. started in 2000 after 20 years of oral and suppository anti-inflammatories . The medics say there is a genetic connection between these two diseases , I think the connection is the drugs . Well it’s just a theory .
  • It could be the weather, that slice of pizza, stress. I’m not sure. It seems to come out of nowhere each time. Blindsided!
  • most raw fruits and veggies
    spicy foods
    coffee and alcohol
    whole and chopped nuts and seeds
    lack of rest
  • Usually stress, sometimes I feel highly processed foods will. I also have noticed changes before my menstrual cycle.
  • I think it is a combination of diet and stress, with the majority caused by diet. There are certain foods that I know will cause a flare and I am finding new ones on a regular basis (whey protein).
  • It is different every time. Food, stress, schedule change, and weather change have all contributed to my flares.
  • Stress, new foods spicy foods
  • wine, meat, gluten, milk, tomatoes
  • Definitely stress and pregnancy.
  • I have had UC for just over 10 years and with my experience in the last few years I always thought it was triggered by my diet. I don’t believe that is strictly related to my diet anymore. I think stress also plays a part in it as well. I think diet has a lot to do with my flares, about 80% and leave the remaining 20% to stress and other things. I stay on diet of lean meats, veggies, some fruit and beans. I can have too much fruit and veggies which cause irritations to my colitis, but not flareups. I avoid as much as possible the things that I have learned that irritate my colitis like sugar (cereal, cakes, cookies..), dairy, wheat and a good beer. At times it is hard to down my favorite sweets or beer and if I have a small serving or one beer I am usually good. If I get a little crazy it brings on irritation and sometimes flare ups if I continue the bad eating habits over a few weeks. I have been in a flare up for about 2 or 3 months now and my diet didn’t change much outside of eating more fruits and veggies over a period of a few weeks. Now I have cut back the intake of those and am still struggling to get back on track.
  • When I was in elementary school, my mom thought the flares were seasonally related; when I was in my teens, the flares seemed to be more around exam time and beginning of school. Through my adult years, flares have been related to stress but if I had to connect them once more, I would say they are usually seasonal…spring and fall.
  • Stress especially lack of sleep, eating at restaurants when they don’t comply with scd diet, eating too many carbs (fruit).
  • Antibiotics, stress, diet.
  • Not sure. Usually stress and post pregnancy – I have 2 kids and flared after both.
  • Stress
    Too much alcohol over consecutive days
  • I believe it is something I eat.
  • I used to think it was diet, like too much fiber, but not sure anymore since I have experimented with my diet so much. It just seems to happen from time to time. Thankfully, it is only mild.
  • I honestly feel like heavy stress initiates flares in my case. In 2008 had a bad flare and at that point i was switching jobs and planning my wedding. I am (hopefully) ending (my worst flare ever) which started in april after a stressful winter/my toddler son having surgery and and me thinking i had breast cancer. Yea. So i think stress is one of the big guys to blame lol but can anyone ever be stress free? No. So we accept that it will happen for us and deal like champs!
  • Greasy foods
  • I don’t see any correlation between my flares and what is going on in my life.
  • It is always STRESS. I feel there is an absolute correlation between colitis and stress, not just flares but also the disease itself.
    I know I have dealt with high stress since childhood growing up in a dysfunctional family and then feeling the need to be an over achiever later on in life and stressful situations followed me.
    I never dealt with the stress so it became a large onion and I am now with the help of therapy peeling the onion but it is not easy.I have often wondered if others can say the same
  • Emotional stress and diet. Dairy,sugar,grains and starches
  • Stress at work and in my relationship has contributed to flares but I wouldn’t say it was the only thing that caused a flare up.Certain foods can cause flare up. On SCD and introding new foods has been tricky (gone too fast sometimes. For example I tried to introduce alcohol and had a bottle of cider, bad idea, had a week long flare with the works.
  • Stress. I work two jobs.
  • Food, stress, exhaustion, lack of nutrients due to diet restrictions
  • i now know ..stress is a very major part to my problem. money and family stress messed me doctor put me on really healped me….also a major problem was that i was full of parasites.please made sure y are parasite first doctor made a bid mistake on that one. i was still full of them..after getting out of the hospital.i was around allot of meat..beware..get it checked by another doctor..make sure they are gone..that really helped me
  • foods
  • Medications, stress & foods
  • Stress
  • Not sure because my flares have been too few since my UC reappeared after many many years. I was diagnosed around age 10, resolved with anti-inflammatory medicine, had my next major flare at age 16, same remedy and outcome, then went 25 years (!) without a single symptom when this last Feb. symptoms reappeared with a vengeance, and I spent 4 days in the hospital. After 3 months of tapering from Prednisone, I flared again this summer but am now managing well after two weeks of a low Prednisone dosage, 2-3 weeks of the SCD diet which I credit with knocking out the bad bacteria, and ongoing 4.8g Asacol HD and VSL3 probiotics. A summer colonscopy showed dysplasia in my colon so I’m in progress on getting another scope to confirm.
  • Still not sure. Could be due to a high stress job. My diet is pretty good most the time. But i have realized sugar does cause issues, such as candy like licorice.
  • still no idea!

colitis flare image

  • Different things
  • My flares lasts soooo long that it is hard for me to determine what could trigger them, but I am guessing the choice of food, bad habits, lack of sleep, being too busy and not resting and relaxing enough contributes for sure !
  • I’m still trying to figure that out but I would guess Stress is the main thing and poor eating.
  • Stress
  • Stress, bad diet
  • Stress
  • The food i eat and i dont take my meds as needed.
  • Stress or eating the wrong foods. Over eating also seems to contribute.
  • I have no idea. I’m constantly experimenting with food but haven’t been able to isolate a trigger. Also suspect stress could be a factor but again there hasnt been a direct correlation with flares
  • I wish I knew! I do notice that the summer with all it’s fresh fruits and vegetables, particularly watermelon, tomatoes, and berries with teeny-tiny seeds seems to be a culprit. Mostly because I can’t stop myself at just one sensible serving and tend to eat lots of the stuff day after day while it’s in season. Also wine, no matter how dry.
  • Anxiety and stressfully
    Situations like nursing school
    And single
  • Stress & eating the wrong foods
  • stress is a big factor in my uc flares but it is also some foods and sometimes it seems to happen for no apparent reason.
  • Various foods, a lot of stress.
  • Dairy and eating out ALWAYS does it for me. This time it has been stress. I have been sick for three months now.
  • Stress, alcohol
  • Don’t know
  • Mine tend to come on as the months get cooler. All of my worst problems have been in the winter. Once it starts certain foods worsten it.
  • I put down my last flare to drinking two pints of beer. The yeast content is bad for UC.
  • Stress and foods i eat
  • I have noticed that certain foods as well as stress trigger it
  • I have never been able to put a finger on why or what causes my flares.
  • Stress, exhausting my body and not sticking to the SCD.
  • Not yet sure. Maybe more likely in winter than summer.
  • Mainly stress and when remicade wears off.
  • Too busy – stress.
  • Stress
  • No idea really….there doesn’t seem to be any one thing
  • diet, exercise (too much running) and stress.
  • I can’t pinpoint it. I think its an evolution of sorts. Not instantaneous. – I’m feeling fine, doing well, get complacent, slack off on my asacol, eat foods off my scd approved diet more and more often…. start back in the gym, doing lots of activities…then it hits.
  • Stress, inconsistent meal schedules.
  • There are many things that I cannot quite pin point as to the flares. I know stress has a lot to do with it but diet wise I haven’t found any one thing that does it.
  • I also have Selective IgA deficiency, which causes lots of infections in my mucous tracks (sinus, GI specifically). I suspect that this, plus food triggers caused my initial flare in the summer of 2011.
  • Stress
    on SCD diet – any carbs can do it – seems to recover quicker so maybe repairing (hope so )
    irritatingly unknowns
  • Never sure but keep away from fried foods, milk as doctor advises, but find bread always bloats me out, I also suspect beef could be a trigger but need to monitor it more.
  • Certain foods, alcohol, over-exerting myself when exercising
  • Stress triggers my flares a lot, as well as eating bad greasy food. Also sometimes if I eat a lot it will trigger symptoms.
  • The biggest trigger is stress … any type … good stress, bad stress, all stress. Excess sugars and excess alcohol (Christmas time which is a combination of all three!) Strange thing is that it isn’t consistent.
  • Stress nothing
  • stress/bad food
  • STRESS!!! Anytime I go through a difficult time in my life, I tend to flare.
  • No clue really, could be a bunch of different things but I mostly attribute it to over-stressing, over-doing it working out, over-eating sugar or dairy products, not sticking to my routines and working to much. I do know that ANY alcohol consumed will bring on a flare. As a woman I can say I get a flare every month around my period, dunno what one has to do with the other but there is a connection.
  • food, build up of inflammation
  • I wish I knew what triggered it, I don’t think it’s my diet.
  • Stress
    Hydrogenated oils (known trigger)
    Overly processed foods (seaweeds are suspect, but since I started suspecting them I haven’t had enough of them to make a clear correlation)
  • For me, it has been either antibiotic use or other prescription drug use.
  • I believe stress is a major factor in flares. Usually for me that’s the only reason I have them.
  • Stress
  • milk bothers me can be anything…cereal yogurt
  • Stress definitely has an effect, not really sure about other causes Not sure
  • Caveat. I was diagnosed in Jan. 2012 and am a newbie to UC. I have not experienced a ‘technical’ UC flare, since my diagnosis. I have experienced more active UC symptoms and have feared they would flourish into something uncontrollable.I know my UC symptoms become active with:1. Stress. I immediately get diarrhea, body aches and chills if I experience a very emotional or stressful event.2. Food – specifically peanut butter and alcohol.

colitis flare question person


Question #5:

How do you know you have entered a UC Flare? What starts to happen to your mind and/or body?

  • It started with restlessness, sounds from stomach etc.
  • i usually feel extremely tired and the glands in my groin swell.It starts with constipation and then really bad wind,bleeding mucus and diarrhea, as the days go on insomnia,headaches eye swelling,weakness and fatigue.weight loss soon occurs.
    mentally tired i become a recluse for the time i am in flare,unable to leave the house (loo).
  • Massive ejection of everything in my bowels. Just the hugest amount. At first i feel proud but then i realize what is about to happen. What follows is typical UC symptoms – blood, mucous, fever, loss of energy etc…
  • I have real bad gas and feel as if I need to go all day and the next day I am usually in a flair.
  • bloody stools
  • I start noticing some of the symptoms such as loss of appetite, frequent restroom visits, abdominal pain, fatigue, nausea, etc.
  • I feel very tired and and out of sorts. Just not myself. Then the gas and urgency start.
  • the flare starts with a large amount of mucus, then lots of blood, diarrhea and cramping.
    What goes thru my mind at the time is this f–kin sucks.
  • my flares are more frequent and more urgent stools. i have never had blood or cramping.
  • diarrhea 3+ times a day, pain, blood in stool
  • the toilet bowl goes from white to red.. need i say more?
  • Feel anxious about trying to stop flare from getting worse, frequent trips to the bathroom, discomfort, blood or mucus in stools
  • My body starts to ache on my left side in my back, wrist and ankle.
  • Pain in ribs, overwhelming tiredness, worry, lose appetite and start passing more and more blood
  • Begins with mucus and soft poo – basically, normal/hard poo ceases – then cramping and urges to go with no results. Tired after flare for a week or so.
    Mind wonders how bad this flare will be. Must take all precautions to keep it from getting bad. I wonder WHY IS THIS HAPPENING AGAIN?! What causes this? With all our medical science and technology, SOMEONE needs to find the cause!
  • vomiting, blood with stool and abdomen pain

colitis flare image

  • I have had urgency to go to the toilet (possible 16 urgent trips to the bathroom per day) blood and mucus and diarrhea. I’m drained and in a foul mood with the situation of feeling like a prisoner in my own home. When having to go out, all I can think of when in that state is – where is the nearest toilet to where I am going, will I be able to make it on time, breaking out in a sweat and my blood pressure raising when I realize I’m needing the bathroom and businesses allowing only staff to use their toilet facilities, its an awful situation to be in.
  • Stress fatigue cramps gas bloating and bloody mucus discharge
  • Abdominal pain, increased washroom use, more loose stools.
  • Increase in gas and bloating, Left sided abdominal pain followed by blood in stool
  • too early to tell for me but more trips to the toilet and mucas has started to re-appear
  • As I explained before when under emotional stress I start with urge to go to the toilet with yellow mucous and little blood. I also notice those symptoms if I do to much physical effort (like lifting heavy things for me)
  • cramping, urgency, loose stool, many trips to the bathroom, often very quickly
  • Always blood in the stool…a little when it starts and then a little more and more bm. /day
  • First flare up was severe, due to eating lots of row strawberry at pick-up place and some stress going on mind. I am still wondering what cause this flare up. (sour taste, too much for my digestive system, farm pesticide)
  • Extreme blood loss, fatigue, diarrhea 30 + times per day, extreme urgency
  • a real flare is for me when i see blood/ an when my belly is very big (then i know my bowels are inflamed). I have little diarrhea even when i’m not in flare, so i don’t consider it as a clue
  • symptoms get worse

colitis flare woman

  • I slowly start into some of the original symptoms I had prior to being diagnosed – it starts with gas, then abdominal cramping, then diarrhea. I usually don’t know it’s a flare (and not just the flu or upset stomach) until all of this has been going on for more than a week. On one or two flares I’ve started bleeding again.
  • Mind starts to get a little “cloudy”
    Blood begins to appear as “streaks” on stools
    Blood/mucus on toilet paper
    Left sided pain
    First pencil thin stools turning to diarrhea
  • Urgency, frequency, and bleeding. Lots of gas, cramping. Mucous and blood mainly.
    Very tired, pale. Not depressed but down and irritated at the situation.
  • Run down bleeding constant running to the bathroom.
  • The sensation of BM or joint soreness.
  • I start to feel worn out and then it hurts to eat. I get gassy and start to hear stomach gurgling, then I start to bleed.
  • I start to feel like I have the flu and more frequent BM’s. I get a low grade fever and have severe bubblegut.
  • Blood and mucus
  • Body: urge, blood, mucous, painMind: worried, sleeplessness, depression
  • Bleeding, more bm’s
  • belly pain
    belchingthen bloody stools
  • my stomach pain becomes much worse and I have diarrhea
  • tired, week , dizzy, bloody stools that very frequent., stomach pain
  • stomach-aches, starting to go to the bathroom more, starting to see a little blood, feel more sensitive’
  • Cramping, frequent BMs, weight loss, blood in stools
  • Diarrhea, blood.
  • I feel pain in my lower stomach, this ranges from so intense that i have to sit down so just annoying and small. i always get canker sores, i feel very tired, my stools are loose and happen more often.
  • I feel exhausted, start to see a small amount of blood and can’t eat without getting sick (bathroom wise)
    It’s almost like I just know it is going to happen.
  • My first flare began with bleeding. I thought this was being caused by another issue… After many months, I began to feel very full after eating. I also felt major fatigue. I was awakened by vomiting and major diarrhea that went on for 18 days.
  • Becoming sicker from day to day. So, first of there are some blood and/or mucus in the white-friend or on the paper. Then I’m going to have dizziness, then friends tell me that I’m looking bad(for the last few flares they accustomed and don’t tell anything))) also i’m usually get worse with sleeping.(especially till on the drugs )
  • Bowel movement frequency significantly increases.
    Abdominal pain and bloating.
  • the time I had one was blood in my stool.
  • I start bleeding/seeing mucus, feel sick all the time, lose my appetite and find it hard to leave the house
  • bloating
  • start having diarrhea intermittently combined with constipation
    small amounts of blood
  • It usually starts with urgency, loose stools, and sometimes blood. A bad flare will also include crazy fatigue, chills, and cold sweats.
  • The bowel movements start to increase beginning in the mornings and then become prevalent throughout my day and night. The stool begins to become looser often solely composed of blood and mucous. The cramping and nausea become worse and then I begin to spiral into severe fatigue, dehydration and a loss of essential vitamins and nutrients which causes me to further feel crappy. The last thing that happens before I begin to pull myself out of the flare is a feeling of depression and anxiety that the flare will not end and I will have to face the prospect of surgery. In fact, at my lowest, I just want my damn colon out!
  • I have the dreaded stomach cramps and toilets visits, i can be on the toilet upto 25 minutes in absolute agony.
  • my stomach cramps
    and when i feel that i am going to loose control of my bowels
  • It usually starts with crampy pains on the left side,especially bad during the night or/and direct after meals.
    I get emotionally tensed.
  • It starts with gurgling stomach sounds, liquid stool, painful bowel movements, passing blood and mucous, appearing in that order. Then urgency, gas, fatigue, emotional liability etc hits after a few days of pain.
  • My left side starts to hurt or I feel sharp pains there. I also have the worst feeling that Im gunna poop my pants! Sometimes the girgle of the “D” starts…
  • Begin to go to the bathroom more frequently, abdominal cramps, diarrhea, blood in the diarrhea, dehydration, very tired
  • Inflammation

colitis flare dark hair

  • Generally, i begin to notice the blood first. it usually gradually gets worse, along with the frequency that i’m going to the bathroom. and i usually go into denial thinking it’s just a bad day, a bad couple of days, until they turn into a bad couple of weeks, and i find myself unable to leave the house.
  • diarrhea, sore muscles, sore joints, low back pain, anxiety
  • Lots of bathroom trips and gas. Pain in abdomen. Fatigue. Joint pain.
  • Blood on the tips of my stools
    feel clogged when I have to go to the bathroom( #2)
  • Burning Abd Pain
    Lots of trips to the toilet :(
  • My stomach starts making funny sounds. Im tired, and I don’t want to eat.
  • I get spaced out, with pain in my abdomen
  • I will get cramping, then the awful urge to run to the bathroom. I also get very hot during a flare.
  • loose stools and stomach pains
  • I have bloody stool and mucus and have to run to the bathroom quickly when I feel the need to go.
  • Explosive diarrhea… urgency… and bloat… with constant gas pains.
  • Exhaustion , diarrhea , frequent trips to the bathroom loss of appetite , increasing amounts of blood . Thankfully all a distant bad memory .
  • I start to feel more fatigued than usual, increased diarrhea obviously. Bloody, watery mess. Weight loss is a big sign.
  • I have pain and chills on my left side and sometimes down to my rectum. I then pass blood, mucus and pus.
    Depression because I can’t get this stuff to stop.
    Now I also have pain and stiffness in my shoulders, elbows, wrists, hands, lower back, knees, ankles and feet.
  • Bloody, mucussy stool, bad back ache, joints swell.
  • There is a “grumbling” that begins and it is very specific to a flare. I know it immediately when it starts. I usually also have a dull ache that runs down from the left side of my waist to my knee. I also become incredible fatigued.
  • Always get a fever, fatigue, and od course increased bathroom time.
  • Cramping bloating bleeding needing urgently to go toilet feeling un comfy pains in joints
  • bleeding and pain, changing colour of stool, bloating excessive
  • Blood in my stools.
  • I start to get cramping and the uncontrollable urge to go to the bathroom. My visits to the bathroom go from the normal 1-2 when things are good to about 6-12. I get blood in stool and even in the toilet when really bad. I will get really painful cramping when going or about to go. My colitis is the the very end of my colon and I was told by my gastroenterologist that is the hardest to control. My mind is affected in that I don’t want to go anywhere out of the ordinary if there isn’t a bathroom close by. I have an idea of when I go after eating my meals so I don’t restrict myself from doing anything, but I don’t go to the movies or things like that if it isn’t in my comfortable time frame after eating. If traveling I give myself 2-3 hours after waking up before leaving and then if a long trip, more than 3 hours, I won’t eat at all until I get home.
  • pain, increased visits to the bathroom with mucous, loose stool turning to diarrhea and then finally the blood….oh ya, there’s also anxiety and nervousness associated with it.
  • Bouts of diarrhea, constipation, blood, nausea. No bowel control, I start obsessing as to where the next bathroom is.
  • I have bloody stools, bloating, constipation.
  • Blood and cramping.
  • Start feeling crampy
    Blood in stool
    no energy
    loose bm w/blood
    generally feel shitty
  • The cramping, and the frequency of “going”.Well I think, here we go again.
  • Mucous! That’s how I know when I could potentially have a flare up soon. The main sign is the urge to go to bathroom when I don’t really need to.
  • I know a flare is coming because i start to feel pain in my lower intestine when i have bowel movements. It starts out minor and by thr time the flare is in full swing i feel like im sh*tting out razor blades lol i also notice about a month or two even before the intestinal that i am overly exhausted to the point ive had blood taken to see what is going on. Now finally after 26 years of having uc i notice the pattern. But i was to young to really understand my lemon before now.
  • Bloody oily stool, frequent trips, pain in stomach and chest. Gas

  • I have been in a flare continually since I was diagnosed 14 months ago.
  • I find my mind talk gets very loud and does not stop. I don’t sleep very well and feel tired a lot.
    Then the frequency of going to the bathroom increases and my stools are very loose and I can tell what I ate early that day because my food is not getting digested very well. Also I get a left sided burning sensation.
  • Frequency goes up over 4-5 bm’s an day then the blood appears. Urgency goes up and consistency of stool gets looser.
  • Blood, D, urgency.Get down about being in a flare but determined to get out of it.
  • Bleeding, always bleeding.
  • Mucas, blood, increased frequency, pain, nausea
  • blood is the first thing..that has not happened since last feb,2012..but the pressure feeling .like i have to crap so freak to the bath..and its really gas only..then i get worried..and guess what..i start to stress..not good
  • get liquidy diarrhea
  • My stomach starts loud gurgling noises, gas, cramps & bleeding.
  • D with blood extra pain
  • Abdominal pain, bloody diarrhea, less energy, resulting anxiety
  • Start to get irritable and angry very easily. Many trips to the bathroom with bloody stools. Waking up in the middle of the night to use the bathroom.
  • Going to the bathroom 20 times a day…depression.
  • Eyes turn red, stomach hurts and loose stools and some blood
  • I certainly have to pay more attention to that but frequency and urgency to go to the bathroom is the biggest indicator for me.
  • I start feeling very fatigue, start going to the Restroom a lot more, and then comes the bleeding :(
  • Bleeding
  • Fatigue, lack of motivation, plenty of blood and mucous when visiting toilet. I always liked that expression ‘visiting the toilet’. Its as if you’re going to take some photos and send postcards from your trip.
  • I haven’t had a flare since being diagnosed in February 2012.
  • Pain in the stomach area. Cramping and painful gas. No appitite and cant get out of bed.
  • A few days before I start having different colored bowel movements.
  • Inability to produce solid stools. Regular need to go to toilet but only air and mucus produced. Rapid loss of weight. General feeling of disorientation and loss of confidence. Low energy.
  • I get the chills, feel incredibly sleepy, low energy, huge dark circles under my eyes no matter how much sleep I get, mental fog, depressed/sad, listless, joint and muscle aches, muscle cramps in feet and legs, my one eye feels numb (no kidding) and one ear hurts, swollen abdomen, constipation alternating with bloody ribbon stools,
  • Loose stools in beginning, stomach cramping, Colon pain then diarreha and bloody stools.
  • I need a restroom as close as possible. It gets me down
  • the pain is indescribable along with frequency with blood and mucous

  • Cramping. Sometimes my body starts to shake a bit like when you have a fever and goes on and off that way for a while. One time I had fevers every night for many months. I also feel week and a sort of mental depression sets in.
  • Of course the BIG D! I also start having tons of gurgling in my gut. My colons begins to spasm all the time. I stay nauseas and lose my appetite. Sometimes I run a low grade fever. I get a little irritable because I cannot get comfortable. I also become a bit anxious because I fear the pain I have the endure. I begin to run around like a nut getting everything set up for me to be down for about 3 days to a weeks.
  • Prior to gi symptoms i get weak, fatigue, malaise. like the flu times a hundred. Regular hi symptoms for meare frequent watery poops. then dehydration which i try to manage at home if not i go to emergency
  • Uncontrolable bloody diarrhea, pain, gas, nausea, exhaustion
  • The cramping (which has never really gone away) gets worse and anxiety get high. From there on it goes straight down hill…
  • I only see it in the pan. Crap with blood and some mucus.
  • Urgency gets more and more and solid stool turns more liquid
  • the first clue is that I am in the bathroom more than 4 or 5 times – then the pain starts in low belly, and eventually (within a few days) ends up across my low back as well
  • a lot of blood in the stool
  • Increased toilet visits, cramping, vomiting and bloody stool all mean I’ve entered a UC flare. I get quite uptight and scared in unfamiliar environments as I need to know where the toilets are. If I’m on steroids, I am quite autistic with my need for routine and the house has never been more organized.
  • Tiredness. Pain. Toilet visit frequently, fast ones… Tiredness is the worst at this stage.
  • Fatigue, abdominal pain, more frequent bowel movements, feeling unwell, nauseous
  • A little blood – loose poops. And then more blood, you know..
  • Running to the restroom frequently
  • Change in bowel movement,s appearance of blood in stools
  • SEVERE abdominal cramping so that I cannot eat anything, more frequent trips to the toilet, bleeding, and marked drop in energy levels.
  • Frequent bathroom visits. Fear of crapping in my pants. Need to use the bathroom before I allow myself to drive anywhere. Blood. Thats the main indicator I watch for. Blood.
  • Anxious, stressed, fatigued, bloating, abdominal pain.
  • I begin to get tired, headache that persists and bloating…
  • It started with a lot of mucus in my bowel movements. From there, the urgency, blood and pain started and got worse and worse. The dead giveaway was when I lost 20 lbs in 6 weeks; that’s when I knew I needed to get to the doc quick.
  • rosy pink cheeks
    looser stools
    waking in the night- not sure why wakened but stay awake – seems to tie in with active colon
    sometimes pains in parts of colon
    less rib pain since started SCD diet

  • My first signs are usually manic gurgling in the intestines and then passing mucus only not real poop !
  • I feel “grey” and look “grey” to others who see me. My symptoms start up, a lot of cramping and stiching. Also my BMs seem more acidic in feel and can “sting” as the area feels raw.
  • I know I have entered a flare when my symptoms start getting worse. I have to run to the bathroom a lot, I have some pain, bloating, and even sometimes gas.
  • It usually starts with burning in the gut, then fatigue, then increased BM, then pain in the gut and joints. Quite often I have an increase in headaches as well.
  • I feel bad diarrhea blood in stools urgency to go and often straining
  • More BMs/bleeding
  • Mostly my bowels become bloody and mucousy. My stomach starts to hurt and gets very gassy.
  • My lower back begins to ache, my mind becomes cluttered and I lose ambition and feel drained all over.
  • cramps, need to run bathroom to relieve myself
  • Urgency, stomach cramps, waking up throughout the night, bloating etc
  • bleeding, cramping, pain… generic UC stuff
  • Lots of bowel noises, gas, bloating, looser stools, colon pain, fatigue, joint pain. All the usual suspects…
  • Cramps, pain, bloating. I usually get more stressed.
  • Cramping/pain and going to the bathroom more often.
  • I get depressed when I see the blood, mucous
  • I bleed alot on the toilet
    achy legs
    lethargic / tired
    on 4-5 occasions i have had one or two days where i go to the toilet >7 times in the morning
  • Start using the loo more. Mucous, bleeding etc
  • I have not experienced a UC flare after my initial diagnosis – but I was diagnosed 8 months ago.

That is one pimp ass outfit!! LOVE IT

Question #6:

How do you cope with and how have you brought yourself out of an Ulcerative Colitis flare?

  • Managing food. Like completely stopped eating outside. And taking as much rest as possible. Like going early to bed and getting up little late. Then mild exercise.
  • very bland food…….mashed potato,white rice,white fish, pasta.No dairy,no bread,no chocolate, tea or coffee warm drinks of any kind.Plenty of water but in frequent, small amounts.while i,m in a flare i usually lose myself in a book or two or three.My husband is wonderful and does all the shopping housework etc whilst i am too ill to do it myself.
    Asacol and pred.
  • I cope by sleeping, increasing liquids including liquid foods, seeing the doc and staying positive!
  • Steroids is the only thing that seems to work for me
  • cortizone or steroids and lately an Fliximab IV
  • I was diagnosed back in 2005 so I have tried a bunch of things that have not helped me in the end. However, recently I have found that Nopalea (cactus fruit drink) and aloe elite vitamins have made an enormous difference on my coltis symptoms. I have been feeling great for the past 3-4 months.
  • I try to give myself more time for myself to relax. I will review my diet and come up with my own plan to get rid of the symptoms. I will do whatever i need to do to avoid going on steroids
  • I increase the enemas from 4xs per week to 7. Switch from asacol hd to lialda. lialda seems to stop it faster, but gives me major headaches, so I only use it when flaring. asacol I use for maintenance.
    Food wise, small amounts of protein, super cooked fruits and vegetables and lay off the wine.
  • I don’t focus on the UC. i have also been diagnosed with PSC
  • Change my diet, see my acupuncturist, and if that doesn’t work I see my GI doc and start some form of steriods
  • Medication is the only thing that helps my flares, steroids have absolutely no effect on my colitis any more.
  • Strict eating habits, yoga, meditation, Greens+ supplement

  • I cope with the flare by talking about it to my husband who, btw has the “bag”, and relaxing when I can. I take asacol, and am not sure how much that helps. Why sometimes it seems to keep it under control and sometimes not, makes me think it’s not the asacol at all keeping it under control. I am supposedly on it for life unless I decide to not listen to my doc.
  • So far pred is the only thing or Iv steroids in the hospital that has ended the flares. Hoping azathioprine will help me now.
  • Be patient and kind to myself. Eat non processed foods, eat whole vegetables, fruits & grains. Take prednisone. Use hypnotherapy/mind apps to reduce stress. Take supplements like flax seed oil & fish oil
  • take ceftum or ornauf tablet
  • I have had a very understanding boss who has allowed me to go home and return back to work as I only live 11 minutes from where I work (so thankful!). Going into hospital for treatment, so much better after being on steroids even for just the first week, taking my medication was very important even though we all know steroids put on weight (it does come off after stopping (for anyone whose worried, please don’t be). Also smoking those 4 cigarettes since July 2012.
  • Just ride the ride watch my diet increase water intake
  • I took vitamins and supplements such as astaxanthine, chlorella, spirunilla and maybe I’m forgetting something.
  • I hold of as long as I can and then resort to prednisone
  • Have not done this yet
  • I try to stay quiet, doing light things and what work fast is taking probiotics.
  • medication
  • Increase the dose of medication, rest more and pray!
  • Yes, it is just third month. Leaving prednisone soon, I have to how I do afterward.
  • Vitamin D, turmeric, lots of water, rest, liquid diet,
  • so far, my first flare stopped by itself (well, actually and strangely just after stopping immunosuppressive) and the second one stopped thanks to SCD diet
  • don’t eat for a day, drink tea and fresh apple juice
  • Up until this point, I’ve always called my doctor when I have a flare and get put back on prednisone. I’m now looking into holistic approaches, but haven’t tried any yet.
  • Increase dosage of Asacol, Rowasa enema nightly, SCD diet – grape juice, geletan, turkey rolls, hamburger patty’s, chicken soup
  • Meds
    Very clean diet during a flare and no alcohol
    This flare has lasted 9 weeks. The longest flare ever but definitely not the worst in terms of severity of symptoms.
  • Iv steroids have been my only medical help, may have to have surgery but am trying some diet changes currently
  • Willpower, and I hide it.

  • I go straight to bed rest and liquid diet, and isolate myself from stressors. I have brought my self of out of a flare with elemental diet, and once with Biogetica Colitis homeopathics. Humaworm anti-parasitics work so since my most severe flare last year I haven’t stopped taking them. I’ve also gone on SCD chicken soup intro, but now I am having success with GAPS, like SCD but helps heal the gut dysbyosis, its a temporary diet, and then you shift to a healthy sustainable way of eating.Thanks for the good work and support Adam : )
  • To cope with flaring I have to keep my sense of humor. Without that I would probably self implode. To bring myself out I immediately change my diet, stick to liquids and avocados as well as gluten free.
  • Always could come out of it but after last flare put me in hospital I’m now on remicade
  • Diet change and lots of SCD approved yogurt.
  • Remicade! Imuran!
  • bland diet
    bump up all meds in my arsenal
    hydrate with water
    rest- especially when my body demands that i restcall MD
  • I go to my GI doctor and he checks me out makes me draw blood and a stool sample and then has me take Tylenol whenever my stomach hurts
  • chicken soup,carrots, meats
  • eat the right foods, change pills (if needed), try to calm down, gentle exercises, rest
  • Prednisone, 60 mg for my worse flare, 40 mg for my better flare
  • Watch what I eat and try to keep stress level down.
  • I have been on many different medication (at least one from each of the major classes)
    mentally i cope with humor
  • It sucks, but it is my life now. I have recently been diagnosed with Crohns Colitis. A new Dr was outraged by how I was treated by another dr and I know now that I am in good hands. I take my meds everyday and am very aware of what I am eating.I am always the youngest person in the drs office, but I don’t care. It’s all a mindset. If I do what the dr tells me, I am good. Even though it totall sucks to have a colonscopy done at the age of 32, I do it because I know that is what helps the drs figure it out for me.I am new to the colitis world (diagnosed 3 years ago), and my journey has been horrible…(Almost died in December from being so anemic because my old dr wouldn’t listen to me that something was wrong). I am a busy mom to a 3 year old, I have a photography business and a house to run. I don’t have time to be sick. So I do what I am told by the new doc, and I am good to go. I have been feeling great as of April.My family is aware now as well and are taking better care of themselves.I don’t know why I have colitis. I have never had a health problem in my life. But I figure god doens’t give me more than I can handle, and I can handle this. I can do this.
  • Prednisone, the evil yet wonderful medicine. I am now eating very carefully and exercising less. Have cut gluten and sugar out of my diet. Also careful with lactaid and caffeine. I was already eating a very healthy diet, so not having to change much, but I miss bread!
  • More strict diet(scd intro about) and sometimes add more drugs. For last time I had to go to hospital

  • In both cases over the last year, primary step was medication.The first time I started with a Medrol 6 pack. Unfortunately that triggered a much worse flare (unlike experience in my initial flare a year before). I then used Prednisone.The second time I just used Prednisone, although I probably did not start high enough since I started with 40 mg, tapering off 10 mg / week, but then had to start over with 50 mg, tapering off again, when things started to get worse during the initial taper.
  • that 1 time I just continued my dose of Colazol.
  • Prednisone. And music to take my mind off the pain
  • time
  • slowing down
    taking copious amounts of doctor prescribed meds
    and the most important one TUMERIC capsules
    this has had a huge impact on clearing up my colitis recent flare up (which lasted 1.5 years)
  • Lots of rest, and I go back to the intro to the Specific Carb Diet and eat only chicken broth, bananas, and carrots for a day or two. I slowly add in other foods from there. I also up the probiotics.
  • During a flare, I try to cut back on my stress and kind of “go under”keeping my activities limited. I cut out all foods that I believe contribute to the symptoms and load up on pro-biotics, vitamins and usually begin a round or two of prednisone. I am currently also taking Lialda and Entocort. During a flare if I am not on the maximum doses of these meds, I beginning taking the maximum doses and during my last flare which is currently, slowly subsiding, I was placed on Imuran.
  • I try not to get myself so worked up, i relax alot more now.
  • it’s hard to cope
    i go on a strict diet and now i’ll have to wear depends!
  • It is still new to me, I was diagnosed with U C during August 2012, during a colonoscopy; after six weeks of absolute hell.
  • Corticosteroids stop flares, the SCD keeps you in remission and reduces symptoms during flares and ordinarily when you just have a few issues and no major blood, mucous or pain.
  • Liquid foods or soft diet, no gluten or anything that would have fiber or caffine is a big NO NO! Rest and hot baths plus tylenol for pain management. Of course a call to the specialist just in case.
  • Trust in God that he is in control and that he is over this disease. Support from friends and family to help in this tough time. Keeping in conversation with my wife about what is going on and how I am doing, and more importantly how she is doing and what is going on with her. Also keeping in touch with friends who have UC and Crohn’s to talk to them about what I am dealing with and what they have dealt with.
  • Going to the doctor
  • i’m really bad about trying to fix myself before i go to the doctor. i’ll fast, and adjust my meds, and do just about anything that i can to avoid going. i hate doctors. but i have only successfully turned a flare around once by myself. i began to have symptoms around Christmas last year, started the SCD, and stopped it in it’s tracks. i went off my diet a bit this summer, had JUST ONE night out with the girls, drank a few beers and danced, then went into one of the worst flares i ever had. still trying to fully come out of it.
  • increase probiotics, cut out “junk” foods and alcohol, increase yoga, try to eliminate stress
  • Still learning how to deal with it. Pred has worked in the past but doc says I am now dependant and can’t use it. Take T3 for pain.
  • very difficult to deal with flares especially after a long remission.
    I fall back into a depressive & angry state. Mostly towards my family ..NOT COOL
    feel sorry for myself !to bring myself out of a flare I buckle down & start to eat right as best I can. Lots of water & PATIENCE !
  • Lialda

  • Steroids
  • Dash to the toilet. Sometimes I have to go twice as I can still feel pain. The pain travels downwards as the poo comes out like water
  • I just mainly let it run it’s course, which of course drains me and I have had to leave work before. The best thing is for me to just lay down, relax and do absolutely nothing (except go to the bathroom of course) I continue my medication, and use suppositories. I have no insurance so I am very limited on what I can do.
  • stay in bed, usually last a day or 2
  • Steroids and now on Remicade.
  • Meditation. Eating right… I tend to do smoothies which are easier to digest. Exercise… although I ALWAYS take toilet paper in case I need to jump in a bush. Probiotics (specifically saccharomyces boulardii) and lots of sleep.
  • Sorry , I jumped the gun a bit there . A few years ago I lost one and a half litres of blood . The gastrologist immediately took me off indomaethecin . The diarrheoa and blood stopped very quickly . Sadly he replaced them with cocodomol which cause a load of other problems . Anyway good diet with plenty of raw veg , food combining and supplements . HCl and pepsin along with digestive enzymes , ironically they were giving me ppi’s for years for reflux and all the time my stomach acid was too low . I think undigested food passing through my colon was a major cause of u.c. in my case . They said it was incurable they also said diet would not have an impact on the disease , they are very wrong . I am not cured but I threw away the drugs and changed my diet 7months ago and I am now 90% better . I never thought I would ever pass a firm normal stool again , at least not without cocodomol , which allows the patient to choose between diarrhoea and constipation . Sorry for rambling on but can I just add that I think anti inflammatories start things off by ulcerating the stomach and the colon . then the ppi’s are introduced stopping production of HCl preventing digestion and causing disbiosis in the intestines . As long as a patient is taking these drugs , in my view no improvement is possible . Finally , I have recently found a probiotic called ,Dr. Ohhira’s original formula . They are the best I’ve tried so far . Sorry I do tend to get carried away , hope some of this might be useful , keep up the good work .
  • One day at a time really. I try not to get too down on my luck, stay positive. Sit in the sun and look at the garden. Eat WELL! No pizza during a flare. No coffee, candy, big heavy meals. Lot’s of tea, bananas, yogurt, soup and REST!
  • Prednisone no longer works for me. Tried the steroid enemas and they worked for one day. I keep taking the Apriso and using the mesalamine enemas that seem to keep the number of BMs down. (Doctor wants me to start Remicade.)
    Adjust diet to low residue.
    Try to rest and avoid stress.
  • Eliminating soda, going on a lean protein, cooked veggie diet. Meds.
  • I make myself listen to my body and get as much rest as possible. I also increase my steroid intake and oftern double up on medication to calm things down.
  • Liquid diet..smoothies and soup. LOTS of rest. Prednisone as a last resort.

  • Steroids or bland diet
  • taking medicines and very good diet
  • Used Prednizone one time, same time I started on the SCD diet. Got out of flare and taped off meds. Now have had 1 flare since starting SCD but got out of it with no meds.
  • Usually going back to my diet has helped, but this current flare up I have had some stressful times at work and I am in the need of more than just diet or maybe just more time. I have been taking the medicated enemas the last couple of months and it hasn’t helped all that much. I have another visit with my gastro in a couple of weeks and I may decide to go on prednisone as it has helped in the past, but only going on it for a month at the longest.
    From your forums and other surveys I have started to take glutamine and trying a new probiotic (didn’t work when I tried it a few years ago, actually made it worse.) So thanks for the information on glutamine.
  • Steroids, steroids, steroids. I have also tried every drug since 1975 that has been on the market…all the way to recently taking Humira…now in remission and hope it lasts because my next option is surgery. I have recently started hot yoga and that feels great.
  • Lots of sleep, low carb scd diet, meditation to control negative thoughts. Visit to the doctor if necessary.
  • Take my medication and see my doctor. My current flare has not stopped or responded to my medication.
  • During a flare i eat easily digestable foods and stay near a bathroom:) heating pads help me for pain. I’ve tried vitamin E enemas and other vitamins but they don’t seem to help me. Medication has brought me into remission many times – enemas(cortisone and mesalamine) as well as suppositories, steroids and remicade.
  • cope w/ Medical Marijuana
    get out of flare ups w/ predisone & other meds
  • I do my chicken broth with chicken diet for a day or 2, and it seems to do the trick..
  • I go on a temoporary low-fiber diet. I know a lot of people have success with SCD, but I find the low-fiber diet, complete with white bread, pastas, etc, and well-cooked fruits and veggies (only raw in smoothies) works until I get better.
  • I cope by remembering that no matter how bad im feeling, even in my worst flare points, that there is always someone out there worse off. I have an A+ support system from my hubby and family. I have an amazing two year old son nd so although i have a less tgan perfect stomach i am soooo lucky in life.
  • Antacids, water, gasx, aloe Vera juice
  • None of the meds have brought me out of this flare.
  • I have only had two flares. One was when I first got diagnosed (high stess time) to overcome it I went on mezavant, also I had a super postive attitude and removed some stressers in my life. That flare cleared pretty quick and I honestly thought maybe that was it (denial) my doctor tapered me off the mezavant (bad idea I needed to keep on a therapeutic dose)
    I was rudely awakened with my second flare which was really bad. I became emaciated trying to deal with it at home, constantly cutting out foods I thought were making it worse till I was hardly eating at all but still going to the bathroom too many times to count with lots of blood and mucus and tons of pain.
    I ended up in hospital on a central line and TPN for nutrition for the entire month of Feburary 2012.
    I was put on high doses of IV steroids and nothing was working.
    Finally the doctors told me my only options left were Remicade or Surgery to remove my entire colon.
    I went with Remicade and have been seeing a psycholigist to deal with all my buried treasures of stress, trying to mediatate and find a better path.
    I also have a wonderful supportive husband and two beautiful boys to fill me up with love and hope.
    I know the stress is the problem for me so I am working hard to eliminate all the stress I can and live a happy life.
  • Prednisone and cortosone enemas. Nothing else will slow it down.
  • In the past I’ve ignored it and been on a flare for a VERY long time. The flare would go up and down but I think I was probably not under control for a year or longer at some times. Finally seeing Gastroenterolist I would be put onto steroids.NOW I go to the SCD basic diet with foods I know I’m ok with.
  • I try to de-stress and am currently trying a SCD diet.
  • Med and diet changes, liquid nutrition only for few days/week and usualy addition of steroids
  • if i feel one coming on..i just don,t eat..thats helps me..i might just have a boiled egg..learned that from adam
  • I am not on meds, deal with it.
  • Try to get a lot of rest and not panic. Try to eat non irritaing foods.
  • Time to slow down and take better care of ME. Usually a Dr visit and steroids.
  • I’m managing symptoms right now with 4.8g Asacol HD and VSL3 probiotics. Although I’m asymptomatic for the time being, I don’t feel like I’m in remission completely.
  • Usually just time. Try to keep my normal lifestyle and keep my diet healthy.
  • tough dealing with it! Changes my entire life, work schedule, my employees, family.
  • SCD diet intro
  • I am coming out of a long flare right now and it was relieved by going to the hospital with intravenous prednisone which I am now tapering off. I started the SCD diet 2 weeks ago and seeing some mega improvements. Hard to tell if its the prednisone at 45mg working or the diet. Last time I was on prednisone was a lesser dose but it did not help as much as I feel now. So I do believe the diet is working !! Now I am faced with the decision to combine Humira as my Dr recommends or go solo with the diet. I am not feeling Himura at all !!!!! I am not feeling surgery either. So much info out there and not a lot of support in terms of the diet from the medical team. So not easy to cope with and make the right decisions. I try to inform myself as much as I can and trust my body and instincts but there is always that ‘what if?’ in my head sometimes. I will always have something to learn from me and how to process and make the right decisions.
  • I am in a flare right now and I’m feeling pretty helpless I’m trying to eat better and pray I get out of this soon!
  • Steroids
  • Haven’t come out of flare since getting uc in January and being diagnosed in April this year. Only let up was when on a 3 month course of prednisone. When im active the flare is less obvious.
  • Through Canasa suppositories
  • I let it pass on its own. I really hate taking the meds.
  • Still learning how to cope. Usually prednisone, however, it has quit working and now enemas, foam, and prednisone are being used. Watching diet closely, doing yoga, and hot baths seem to help.
  • Take suppositories. Eat vey bland food and avoid alcohol. Try and relax. Sleep as much as possible (difficult with two young children). Drink peppermint tea.
  • I’ve followed the SCD diet for seven years now. When I get a flare I go back and start over with the introductory diet. I cut out all raw fruits and veggies, eating only cooked ones, eat lots of homemade soups, cut back on portion sizes, limit my honey intake, basically watch everything I eat, get lots of rest (if possible), make sure I’m getting adequate doses of vitamins and minerals and just try to take really good care of myself. If it gets really bad, I call my gastro but I hesitate to do that because his staff is not supportive at all.
  • Rough as i am a nurse and full time single mother of three.y diet is chicken soup, juicing, goats milk yoghurt, poached eggs, fish oil and probiotics. Bed rest and doses of prednisone with the lovely rowasa enemas antianxiety meds,..also prayer relaxation and meditation.
  • Change my entire diet, exercise and rectal suppositories.
  • usually if the flare is not too bad i just wait for it to pass. could take a couple of days. if its a bad flare i usually have to go on steroids for a week, get plenty of rest and try to keep warm as i find when having a bad flare im totally shattered and am always cold
  • If I can, rest, sleep, be near the bathroom. Lots of chamomile tea just to relax muscles and nerves in my body. Many times life doesn’t permit such “luxuries” so in that case just make sure I know where the bathrooms are and avoid foods/drinks that can aggravate it (coffee, spicy foods, sugar).
  • I usually can bring myself out of it as soon as I feel the symptoms come on. I stop all food and revert back to a homemade chicken soup that my husband makes me. It is made from all organic ingredients and free range chicken. I have to eat it three meals a day and dirnk tons of smart water to balance my electrolites. I CANNOT tollerate anything else when I have a flare up. I also revert back to hanging out on the couch and catch up on my Netflix streaming for a few days. HA!
    Right now I.m in the middle of a flare up. I have not been able to bring myself out of it. I ended up with Ulcers, an ilius and three days in the hospital(just last week). Ugh!!! I think my immune system was out of whack due to extreme stress. My husband has been ill the last four months and we just returned from the Mayo Clinic 10 days ago. Yea, then I spent 3 days in the hospital….Things kinda suck right now. I’m on some new colon meds and taking the GI cocktail right before every meal….I don’t usually have to use meds anymore and I can get myself out of quite fast. This time has been a lot harder.
  • Time. rehydration. no food. laughing at it. great family and friends. trips to the loo are like p90x cause i get flat abs and lose weight. sometimes i wear layers to hide the weight loss.
  • Getting lots of rest and eating next to nothing.
  • I’m really bad about seeking treatment until its really bad. I do try to advoid foods that aggrivate it but I guess I stay in denial :-(
  • First flare up was not diagnosed until after it finished (about two months). This due to the long waiting list on the National Health Service in the UKSecond flare, full hospitalisation for four weeks and lots of pressure to have a pouch. Drips of steroids (didn’t work) and then Ciclosporin that did.Third flare up with oral steroids and then sticking to the specific carbohydrates diet. I came off steroids using something called ‘Phosphatidylcholine’, a non-pharmaceutical product that repopulates the flora and fauna of your colon (special coating allows to arrive in your colon and not get burnt up in your stomach). Additionally using VSL3 and recommended supplements and drugs (Pentasa and Azathioprine)I never drink beer now, but have relaxed the diet as I think the Phosphatidylcholine did the job in getting the enzynes right in my colon. Would highly recommend Phosphatidylcholine that has a good small clinical trial that backs up its potential. Would revert to the specific carbohydrates diet if I got another flare too.
  • Thru medication i have helped myself once get out o a flare
  • I haven’t figured that part out yet.
  • meds
  • I cope with flares by staying mentally on top of it. I will always try to keep two constants in my life routine during a flare, which is work and yoga. If I can still do these then I feel I am beating it. Once I can’t I feel a little defeated and that’s when a positive mind needs to go into overdrive. I will do more meditation, acupuncture and get straight back to basics on the SCD but it’s really only drugs that have ever got me out of a flare.
  • I have got moore medicine (Pentasa) and it have stopped it. I just hope for the best.
  • Heating pad is my savior and take pain meds
  • Scdiet and medicine: Pentasa
  • Begin steroids
  • I’ve always sought medical advice and usually end up controlling and eventually coming out of a flare by using pred-foam enemas
  • DRUGS: Prednisone, Vicodin and medical marijuana (stops the cramping, allows me to eat food and slows down my gut).
  • Seems to take about a month of strict diet. Maybe eating much less, giving my intestins a break. I hate to do it cause I spend so much time trying to gain weight/muscle…but fasting intermently while doing the SCD diet seems to be the best non-medicinal choice for me.
  • Adjusting food types, supplementing with extra probiotics, vitamin C.
  • I am on Asacol, Immuran and now Remecade infusions.

  • I was taking a whole bunch of stuff, so I don’t know if it was one thing in particular or a bunch of stuff, but it worked…my doc put me on a long-term dose of prednisone, starting at 30 mg (tapered off at 5 months), daily mesalamine enemas and Lialda 4.8 mg. Also, when I was in the greatest deal of pain, I was given morphine in the hospital and then given a Vicoden Rx when I left. Those two things helped me deal with the worst of the pain until the prednisone and mesalamine/Lialda kicked in.I am still on the mesalamine enema twice a week and the 4.8 mg daily of Lialda. I also take LDN, which I’ve been taking for both my colitis and my hives; not sure I really need it for the colitis, but it seems to help for the hives and I’ve read about other colitis sufferers whose lives have been helped by the LDN.
  • strict SCD helps hugely, doesn’t progress as much on this diet and usually just uncomfortable for a few days
  • Radical change to diet to include more liquid of soft foods like soups, then start the asacol suppositories maybe then colifoam, double up on the Mezavant XL from 2 to 4 per day, increase probiotics
  • Rest, alternative medicine, meditation (help with taking focus away from discomfort), make sure I’m on routine with conventional meds as well.
  • I haven’t quite figured out anything to do besides wait and let it pass. I try to keep positive and make myself less stressed.
  • More rest, mild exercise, very mild diet … and more often than not … prednisone.
  • Never brought out except with drugs
  • SCD
  • For ten years I was able to control it with enemas and controlling my stress level but this year I had the worst flare of my life. I switched gears and went to a gluten free diet as well as followed the SCC diet. This cleared up my flare in 3 days. I am so blessed but also just praying it continues to keep me healthy.
  • Decreasing my food intake and sticking to the SC diet strictly, limiting any excessive activity to allow my body to rest an I try to stay away from all allergies, sugars, grains and dairy products.
  • let it take its course
  • I can only get myself out of a flare with pred but I’m now trying the VSL3 probiotic too
  • Make my diet easy and call the Dr. Usually I eat nothing but bananas, thoroughly cooked veggies, and drink a lot of coconut water. I’ve also tried taking Bromelian, seemed to help but I’ve only used it once so it could have been a spurious correlation. When in doubt, steroids tend to knock out the worst flares in about 2-3 days.
  • In the past, with higher doses of asaciol and adding enemas…but that stopped working. Now, I got out of a flare, and am maintaining remission, with probiotics and other natural stuff like L-glutamine and astaxanthin. Do you all know who I am….LOL!
  • Trying to think of other things. Reading relaxing things like that help me to come out slowly
  • Tons of medication and remacaide infusions.
  • watch what I eat and drink a lot of water also take probiotics to help the flare
  • foam enema and it runs its cause
  • Either steroids or enemas or lately nicotine patches
  • I have not experienced a UC flare after my initial diagnosis – but I was diagnosed 8 months ago.


I hope you all enjoyed the UC Flare survey.  Big Thanks again to Therese for suggesting this as a survey topic, and a major big thanks again to all the participants.  For those of you who wanted to participate in the survey, but the survey was already filled up by the time you tried to take it, I apologize for the size limitation, however, feel free to write your comments below for others to see.

Thank again,


Adam Scheuer

59 thoughts on “157 Patient Ulcerative Colitis Flare Survey Results”

  1. Sweden represent! going there in May for the Eurovision song contest in Malmo!

    I didn’t really see anything here that I didn’t expect, other than 157 PEOPLE DID THE SURVEY!! WOWZA

    Good work yet again, Adam!

  2. It would be great if some researchers would read these. Stress appears to contribute to flares hands down!!! Thanx for the great job on compiling this Adam!

  3. Thanks for the survay, very interesting! JamieIsLame and Adam – welcome to Sweden! Right now we have 9 degrees C and rain, but it sure will be nice in spring and summer! ; ) In the meantime lets just wait for the snow : )

    1. What’s up Carina,
      So you’re one of the lucky ones up in Sweden!! Lucky you, I’m gonna hit you up when we get up there.
      Take care and glad you enjoyed the survey…now time to find the blue and yellow candles…:)

    1. I’m sorry Grant, don’t take it personal, but I can’t afford the 500 kroner cup of coffee or $20 burgers I’ve heard about up there amigo:)
      No really, for sure Norway is most definitely on the bucket list for sure. Got a good buddy from there and would LOVE to visit someday.

  4. Great read. So many people and yet there are obvious patterns and similarities in cause and what is done to control flares. Reading these things really help me, especially during a flare. Thank you.

  5. This is incredible, Adam. Great job, and I agree that stress plays a major role, and for me too! I would love to help publicize this, and your findings…. Someone said that more people should read this, and I agree wholeheartedly. It will help so many and perhaps I can report on my blog somehow? I was also thinking, as I read through the fantastic responses, that it would be great to have a survey on whether and how exercise helps ease, or possibly even eliminates, flares…. I am writing a guest blog for PLoS Obesity Panacea, and I cannot find any contemporary studies about exercise and IBD.

    Anyway, would appreciate any ideas! And, again, rock on with all the GOOD that you are doing, Adam!

    1. Hey Dede,
      Great to hear from you, and I agree, the survey is pretty incredible. Feel free to post a link to this on your awesome site, and tell all the doctors you know about this too::)

      As for exercise and flares, that’s also a great idea for a future survey. I’ll for sure keep that in mind. Might coincide nicely with the UC PUllup Competition that is underway with several of us!
      Take care, and glad you enjoyed the survey!

    2. Exercise was the only thing to pull me out of illness – I have less facial flushing and I wasn’t feeling sick every night at the same time when I exercised. (Until this flare)

  6. Out of 156 answers, STRESS was mentioned 121 times in Question #4:
    What do you think TRIGGERS your UC flares? Is it always the same thing, or do different things trigger your colitis flares?

    Now, if that doesn’t convince medical professionals and researchers that stress is a factor, I don’t know what will.

    Thanks for putting the survey together and posting the results, Adam.

    1. Hey W,

      It is pretty interesting to see “Stress” mentioned so many times among UC’ers.

      It’s also pretty interesting how un-spoken or looked over stress can be when you’re in the exam room talking with your GI about active colitis symptoms. But, like so much of life, trial and error, and the super complex body we all live in has some mysteries that modern day (and old school) science is just beginning to understand.

      That said, Stress and the connections to UC and the immune system really is nothing new. If you (or anybody else is interested), I wrote a post over a year ago based off some of the findings from Dr. John Medina (who is a friggin super cool guy, and super smart brain doctor, who has written the best-seller book Brain Rules) that gets into some of the real details (IMO) about the stress-immune system response. It’s right here:

      And of course, the previous survey was all about stress and UC and that was pretty interesting, you can read up on that here if you like, the responses seem to pretty much confirm that there is a DEFINITE relationship in some way with many UC’ers:

      take care, and wishing you and all the others with UC the best this weekend. And once again, I’ll preach this now, I do in my own book, and I did last night at a friend’s house over dinner, Read Dr. John Medina’s book “Brain Rules” it’s absolutely amazing and it goes into some seriously cool details about how our brains work and the connection with so much of life…I think its about time to pull it out and give it a read once again.
      Ciao for now W,


    I love the surveys, Adam. They hit home the fact that alot of us are so different, and yet alot of us are the same.

    Cheers, and thank you for all the hard work. Thank you for all of the time you spend in your life taking care of us and this wonderful site. I don’t know where I would be without it. It keeps me going!! I’m so glad it’s here for all of us.

    You are APPRECIATED Adam!! Right everybody????


  8. I forgot to also say, Adam, that the gastro specialist wants me to now have a colonoscopy. I think it’s because I fell off the radar for almost 8 months and also because of the natural way that I attained remisssion. I think she may wants to guinea pig me out. She clainms it’s because I have had UC for over 10 years, and that she wants to do (or I am supposed to have) a different biopsy called a ‘flat’ biopsy for cancer staging, if there is any. I had a ‘polyp’ biopsy the other 4 colonoscopies. I call bullshit, but what the heck do I know. I wish I knew for sure…

    She also tested my inflammation levels and my vitamin D levels. I have NEVER had either of those tests before. She also asked me what strains were in my probiotic, and could I let her know. Is there perhaps some new research about natural remedies coming down the pipes, I wonder? Mmmm. I’m oddly suspicious. No doctor has ever asked me or listened to me about my self treatments. She isso very interested all of a sudden, now that I am med free and in complete remission.

    You are in remission and yours is coming up very very soon. I have scheduled mine for November, but I amy back out because I do not want to upset the proverbial apple cart at this point, you know what I mean? I don’t want any UC to start up again. On the other hand, I have this huge fantasy of being told that there is no sign of UC in my colon at all. That would be the SHIT, man!! Could you imagine?

    I don’t know what to do. My mother and husband figure that they are trying to pull me back into the ‘system’. I certainly don’t want that! Sheesh…what to do…

    Ciao for now!

    1. Hey Bev,
      Just wanted to let you know that there is supposedly a big research thing going on with CCFA and probiotics. I have even taken a couple of surveys that now include what alternative things you are taking believe it or not!
      As far as the colonoscopy, I too am dreading upsetting my applecart as well and I know I’m due it’s been 2 years and that about how long my GI likes. Anyway, not sure when your last one was, but besides being a guinea pig, it may be time or a cya(cover your-the Dr.’s -ass!!)
      Best and continued applecart! :-) Shelly

      1. You are SO awesome Shelly!!

        Thanks to yourself, and Adam the man, I think I just may now have the courage to go forth, and thus be violated by the doc! After all, this will be the very first time I am not in a flare when I have a colonoscopy, so maybe it will be alright afterwards!

        Thant is also GREAT news about probiotics! I can’t believe that the medical community is actually starting to recognize them. JOY!!

        Take care, and thanks for the encouragement, and the info…I needed it and I do appreciate it all!


        1. i got out a militare hospital about a month and a half ago in wisconsin (usa) and they directed me to a few diet changes that got close to the scd diet & probiotics to take with my meds. they also told me about ccfa, so hopefully that means dos’s are getting better with giving all the options. i have another appointment with a civilian GI in two days, i’ll post how he responds to the herbal stuff.

    2. Hey What up Bev!
      Thanks very much for the nice words above, and I feel your dilema pretty hard as far as the reluctance to get violated again. I’m t-minus 6 days, and about a week ago I started losing some sleep over the things that you mentioned and the general “not wanting” to potential disrupt the happy party that’s going on inside, but that’s passed.
      Just like you, I’m wanting to get the inside scoop, (hopefully not too many biopsies) and make darn sure the inside is looking as good as I’m expecting. It’s been 4 years for me since my original anal violation and with the chance that I might be heading out of town for an extended stay east side soon, I want to make sure all is good.

      So, if its any encouragement, I’m now thinking “Bring it on doc” tread lightly in there please, take some snips, and a ton of pictures so I can see the real deal as well. And I’m thinking as well, if the prep/violation doesn’t disrupt the system to much, it’s gonna make me less tripped out the next go around when an inside peek is overdue. I’m giving myself 2-3 days of potential recoup after the violation, but hopefully just a day of gas, got some parties to hit up next weekend right!

      As for the probiotic interests, I’ll tell you what, the GI I met with who’s violating me next week is super duper cool. I can’t say I love him just yet, since I don’t know how gentle he is right…but he’s probably in the love category so far at least. AND, he told me that the GI convention he attended this year down in San Diego with GI’s from all over was heavily dominated with talk about Gut bacteria and topics along those lines, So….you fill in the blanks I guess.

      thx again for the kind words, and you are a rockstar up there in the North!

      1. Awesome survey once again.
        Good luck with the scope…here’s to some healthy, clear pics and continued good health :-)
        Besides you got yourself a serious pull up challenge-you lifting cases of t.p. yet? :-) Shelly

      2. Aww, thanks Adam. As I replied to Shelly, up above, you are both so right about the procedure, and I am now less afraid of the scoping in November. The last push will be when you tell me that yours all went A-OK. Somehow, I just know that it will!

        Oops, it seems that you are now MY guinea pig…lol…sorry bout dat!


        1. You’re awesomely positive Bev!
          Guess you both will be leading the way and being great role models for all us UC’ers since we are supposed to be scoped relatively often because of the UC and our increased risk for cancer. I think the prep is still a zillion times better than it used to be with the nastiest fleet phospho soda…makes me nauseaus to even and think about it plus the enema prep! We’ve come a long way!
          I think my primary care Doc. had a great point about doing things like trying meds., alternative meds., and even colonoscopies while you are feeling better so essentially your rebound should be faster and you’ll heal quicker-plus documentation those alternatives are working! The bonus! :-)
          Best, Shelly

          1. Oh yes, the prep is way better now! Thank goodness for that. It was truly dreadful earlier on.

            Again, I need the encouragement. Thank you Shelly!

  9. Hola!! I absoulutely agree with you Bev. Adam has made a great work with the webpage and the surveys. I found this web in the worse time of my last crisis that started last July and thank God I am recovering right now after megadosis of prednisode, probiotic, mesalazine, mylanta and a change in my diet. I found support, I felt I was not alone in this fight, I learned a lot of the others experience, and the best part was having a lot of laugh with Adam s sense of humor. I never thought I could find the funny side of this disease but I did. We need to learn to laugh more, I think this is the clue. Feeling crappy and depressed does not help at all. !!! a big virtual hug for Adam and all the UCers!!! from sunny and beautiful Asuncion, Paraguay Southamerica…Maria Lourdes, 50 yo., diagnosis at 12 years old. It has been a long fight already but here I am!! Cheers! Saludos!

    1. Senora Lourdes,

      Muchas gracias por tu commento.
      Yo recuerdo cuando nosotros escribiremos en el pasado, Y yo quiero hablar mas in el futuro, o si possible, mi familia creo que nosotros necesitamos ir al tu pais.:)

      No se cuando, pero cuando yo voy a tu pais, mucho chistes de colitis todo la dia! Buen idea?
      Pardon mi espanol malo, Si mi profesor de espanol de vente anos en pasado leer estes commentos, probable muy chiste:)

      Buen fin de semana, y muchas gracias por tu commentos!

      hasta la vista, y grande besos para Paraguay!!


  10. too late for survey ,,but found it very interesting and informative,, Would be most gratefull if i could have some feedback on blood loss in stools,? I have been in “flare “since January 2011,,then diagnosed by colonscopy in November 2011,, Hospitalised in February 2012 ,from April to now have had 12pints of blood transfussed,, Cannot get my blood count above 12,, was 15 before i was unwell ,,the normal is 13 to 18. my toilet visits average 8to 10 per day ,and are always Slurry ,Sludge or liquid,, everyone mentions stress, diet ,and medication ,both natrual and perscibed,which i can relate to on every leval,,but blood loss and it,s replacement ,no mention ???? Am i that ill ,and i don,t know it,, or have not been told ,,.?? Someones comments would be Appreciated..

    1. Hey John,

      I’m very sorry about all the blood loss you’ve been experiencing. What are you doing on the treatment side of things? Have you noticed any positive results (even if temporary from anything on the treatment side?)

      And, have you talked to your doctors about being tested for C-diff? C-diff is a nasty addition which you can read up more about on this site or if you just google it, but reason I’m mentioning is that it can lead to blood loss, and symptoms real similar to UC. I came down with C-diff not long after my diagnosis several years ago, and “they” say that its commonly contracted after taking antibiotics, while UC symptoms are active, and after/while in hospital enviornment etc…
      So, might be worth chatting with your doc about if you haven’t already as its pretty nasty but once taken care of its a world of difference. Again just a thought, but you’re comment reminded me of that.


      1. dear adam,, thank you for your response,,i will ask my doctor on monday to check for c,diff.. i am in transfussion clinic so my bloods are monitered,, for further blood transfussions ,,my count last week was 10.4 after 3pints of blood given only 5 days earlier.. my platelets are/were 515 (sign of inflamation /bleeding) been up to 600 max and a “normal” 300 many many weeks ago..When i was first diagnosed aftera colonscopy ,November 2011.I was given 40mg predisolone and 2400mg of mezzavant.. i had an immeadiate response, and was “normal”for 8weeks ,Then my motions became looser /liquid.. Chronic pain and was hospitalised for 10days in February.2012. on morphine every 2hours,the surgeon was called ,and this seemed my only option. was given i.v. meds antbiotics and cortisteroids,, given Azaproprethine? But gave me Shingles.. Also had blood clot on lung from the inactivity in hospital. Been having blood now since April,,always after my blood count go,s down to a place where i become pretty ill.. Like last monday the doctor could have given me another 2 pints ,due to a blood count of 10.4 ,,but we decided to wait another week ,has i “felt “ok to see were my count would be on monday next,,

    2. John, I was also hospitalized in Feb for 14 days and am still in “blood recovery” I dont get transfusions though. The Dr gave me some iron pills which made things crampy, but it brought up my blood levels from 7 to 12 in a week!!! Owning and working a bar can be very stressful!! Alcohol should be omitted while you are in flare. I have to avoid anything bubbly at all times, but everyone is different. I do 1/2 gatorade 1/2 water all day while i am in these “speacial times” I also do plain white rice, banannas, toast (all gluten/wheat free for me) seems to work really well. I work in yogurt (all natural) for those wonderful probiotics, and eventually work in normal food. I keep a daily doo diary which includes stress levels (what stressed me), foods I ate that day, how many stools and what they looked like, it seems to help because you may forget what day you had the chili and what day you had the hotdog, and which one set you off. I also write down if i doulbled any meds, took away any, Drs visits, any kind of changes, then I can go back and see exactly what the culprit was and how to overcome it or stay away from it completely.
      Hope this helps! Good luck to you!

      1. Dear Gina,, Thank you for you reply/response..I have had 2 iron infussions,,also iron tabs ,both did not agree with me ..End ed up in A/E on 2nd iron transfussion .. Chronic constipation /or kidney stones,,which i also suffer from . I keep a log/diary of EVERYTHING.. by the hour.. looking for ways to improve my contion and quality of life.. My lifestyle seems to be a big problem!! also ,,eating !! Last night was the 1st time i have not have to go to the toilet in the early hours /or after 1/2hours sleep in 12months..!WHY? my last meal yesterday was at lunch time (1.00pm.).i had a SCD MEAL,at 5.00pm apint of welch,s 100%grape juice mixed half and half with water.. at 10.00 1 pint of water. Went to toilet at 7.00 pm and 10.00pm. Got to bed from pub around 1.00am up at 3.00am for pee,, then got up at 8,30am. had to go then ,,with urgency had slight missap ,,very rare ,but does happen ,,BUT NO PAIN or Discomfort. Although ,i felt sick ,which i think was from lack of food. This not ideal ,or even what i want,!! I am over 2stone lighter than my normal weight,my waist size is smaller now than when i was a teenager.. also ,I owned a Gym for 10 years and was a bodybulder ,so being like i am now is very depressing.. To date i have had 14 pints of blood .. the latest 2 pints 2 days ago .. I think i am not bleeding in my poo .. but still need blood ,????? concerned as to why.? My platelets score indicate bleeding/inflamation.(522) normal would be 150 to 250 ish .. only once for a week did i get 300. a few months ago. Seeing a consultant/specialist on monday next. Considering Fecal transfussion.. best wishes john g gerrish

  11. Great survey results! I agree with almost all the responses.
    I have had challenges with UC since diagnosed in 2005.
    On & off prednisone for years. Currently on prednisone since
    10/11. Exploring Humira next month. Thanks for sharing
    results. Will these be shared with any medical team?

  12. ¡Saludos Amigos! (FYI, I am a beginner Spanish student, and Adam is not only our fearless leader, but he is way smarter than I am and KNOWS Spanish—well, let’s see what Lourdes from Paraguay says….the jury is still out! And Bev, and Shelly in Maine, are all awesome. I wanted to chime in on a cp,e of things…, if I may ;) Bev, I have been in remission for six years…. When I go to my annual at the IBD clinic, the nurses always ask me what I am taking, what I am doing, to stay so healthy. I thnk these people who work in IBD just see so many sick people day in and day out, that they are blown away when we come in with great bloodworm. and clean colonoscopies! Glad to hear that probiotics are finally being studied. I use Ultra Flora powder, and get it from my naturopath. Did you know there are more gut bacteri than human cells??? Yikes!

    Adam. If I may, can I post a link to my blogpost on The Dreaded Colonoscopy? It got picked up by Prevention Magazine, and they actually used my pre-colo recipe…. I prepare by slowly decreasing my solids naturally (upping protein and electroytes with organic chicken or beef broth) in the days PRIOR to drinking the stuff, so when I start the prep, I am clear much sooner, less stress ;)
    I have to go in October, and here’s what I wrote ;)

    Hearing from the others on this site makes me less afraid, too! There is always gonna be anxiety about the results, but having a positive attitude is key. My GI is super nice, and very cautious and careful doing the procedure. Last time, he saw some inflammation around my surgery spots, which is to be expected, so I am doing some positive imaging about decreased I flammation before I go for the test!

    John, I don’t like the sound of so much blood….. Pernicious anemia can be really hard to recover from, so you need to eat iron-rich foods, like fish, and if you can tolerate, leafy greens….and take a supplement. The iron supplements make me more constipated, so may be a good thing for you to try?! The other thing you should talk to your doctors about is something called “iron overload,” from ALL the transfusions. that can be serious. Hang in there. My Vitamin B12 was non-existent when I was really sick, and it took one full year of weekly injections to get my blood counts back up. I would encourage you to speak up and work with your hospital team, and have them check for the C-diff, too, like Adam suggested. Are you getting tons of rest? Isn’t there something else they can give you to help get your numbers up? I have herd that this is a common problem with uc-ERs, so maybe there will be some better feedback. I just wanted to write quickly, so you didn’t feel alone!

    LOVE this site!!! Good luck to all my colo-buddies out there, and Adam, I think you are first! Breathe, relax, do some imagining of clear pink tissue colon wall, free of inflammation, polyps and ulcers. Just focus/meditate on the healthy vision of the colon! It works;)

      1. Thanks Shelly & Adam, I did SCD for 3 weeks before my surgery, and it is what really got me on the road to recovery! I learned tons by reading Elaine’s book cover to cover…. Thanks for the note about the article, and I will be thinking of everyone during this time of getting colonoscopies, and other people I’ve read about above who are having flares right around now. I read somewhere that the changing seasons brings on flareups, and it is good to address that in terms of getting extra rest and taking supplements. Someone wrote that it is usually too late to address a flare, b/c we all are in denial leading up to the flares, and think they are gonna go away, right?! How about taking a preventative approach: Nip the flare before it starts: back off on foods that may irritate you (tonight roasted chicken for me and steamed veggies—yum!), slow the digestive system down, eat small frequent meals, or snacks instead of big, heavy, rich meals that can slow up the digestive track—there are these hairlike things called villi ( that form the inside of the colon wall, that kind of help move the food down the track (it’s all about motility!) … and we’ve got to keep things calm down there! Vitamin D is showing promising results in aiding Crohn’s/uc patients. I also take probiotics and ground flax seed EVERY NIGHT (this is what I swear by!) … and lots of water.

        Many of us suffer from leaky gut syndrome, and don’t even know it! The SCD is a great approach, probiotics, digestive enzymes (like plant based enzymes in the SCD) really help, Omega 3, multi-vitamin (I use a phyto-nutrient vitamin), for starters. Also, acupuncture helps with liver function, which for us is compromised by having an auto-immune disease…. I got once a month, and love it—i is very relaxing (note; if a child, or you hate needles, ask them to use moxa instead!)

        Don’t forget sleep, gentle yoga stretching (with twists_sit crosslegged, and gently twist right, one hand on your knee, the other on the floor and breathe and twist a bit more; switch your leg cross, and twist left, breathe and twist a bit more_this type of simple yoga literally helps the intestines keep from getting kinked!) Rest, relax, breath… and communicate with others….

        1. Dede,
          AWESOME BOOK! :-)
          I just devoured it home sick gave me the time to take it in while my brain is not on auto pilot after a full day.
          I loved it as much as Adam’s, James Scala’s(my original UC bible, too), BTVC and Tracie Rendino Dalessandro…your book is a great addition to the collection and encompasses the whole body. It’s amazing to me to have access to so much info/people….the internet…and we/they are still uncovering so much with the genes, probiotics, diet, meds.
          As a lifer with UC(30+ years-of diagnosis) I appreciate the info along with your personal experiences. Of course, you are always so informative and thoughtful in your responses on here as well-plus your articles.
          Keep up the amazing work.
          I encourage people to read all those books!
          Thank you, Shelly

      1. Sorry I have been out the loop, Adam! Was just blogging today about have a bad flare-up…. So nice to have this site and you being a solid presence out there in the uc-land and for me with both uc and Crohn’s….. They want me to start taking 6MP, but I am exploring other treatment options and back on SCD! Hope you are well—ironic, that I was the one who researched colonoscopies and I had a really bad one, and am really sore from all the poking around they did in there! LOL, but am resting a lot! My best to you.

  13. Hi there!

    Wish I had found out about this survey beforehand to add my own 2 pence.

    I was diagnosed last year with UC and I have been on Mesalazine ever since. The only flare-up I had was when I was when I took Neurofen (silly I know) during a really bad laryngitis. Otherwise I’ve been symptom-free since I started the course.


  14. Great survey. Since stress & diet seem to be the most common triggers, I’m wondering why counseling & nutrition education are not part of the regular treatment for this disease. And by nutrition education , I mean the benefits others have experienced going gluten-free, SCD & GAPS diet. I know, I know, I know. I’ve heard it from the docs, ‘b/c there is no empirical research to show that ….diets do anything….’ It seems a disservice that docs are not talking about this stuff more with their patients. BUT I am glad this website exists to share others’ experiences w/what works and what doesn’t…Dede, I really like your explanation abt the gut science.

  15. further,,another common thread of your survey ,,was stress!! and rest!! I own a Bar (pub in uk.) and do not rest . I work every day about 70 hours a week,,Is this a big factor in my inability to get to some sort of normal health sitution.?????

    1. Hey John,

      You’ve got a real tough question to answer. I’m certain there are many people who have UC and are living a happy/healthy lifestyle with super stresful jobs/lives. But at the same, time, I think its clear that for a real big chunk of us, stress does play a role in colitis symptoms. Exactly how big a role is very debatable and equally hard to come up with any metrics and or formulas. That said, for me personally, I try to reduce stress in the day to day parts of life as much as possible. One example that worked real well for me is based on how I commute to and from work, and throughout the day. I used to drive an hour each way to the area I work, and then for my job I’d be driving around all day making many stops in San Francisco, which can get pretty crazy at times. So, back in May of this year, I stopped all that and its been almost a half year of taking public transportation ALL day, and geeez, let me tell you…BIG difference. No more panic/freak out sessions while driving over the bridge each day, no more fighting for parking spots, no more of that hassle. More walking, more reading everyday, and more relaxing. Of course I don’t know all the ins and outs of your day to day, but if you can think of some things to try out in terms of lifestyle changes that give you more control over situations, that might be something to think about. Again, its not easy, but maybe sittind down with a pen and paper and mapping out your day to day deal might allow you come up with some new ideas on how to get from A to B, or how to get “this” done or “that” done. I wish you the best,

  16. I have had uc since i was 15 or 16 years of age now 23 and im getting off my Lialda at the end of the month. Has any one else really got off any of there meds for UC? and for good im off them hopeing not to flare up like i did last summer ago i was in the er room for almost like a week and had to go back on my meds for and now i ask my dr and told him im not haveing any issuies of a flare up or nothing anymore and not feeling so sick anymore i feel great and im happy to get off them soon and hopeing to stay off them for my rest of my life..

    1. I’ll chime in!!

      I have gotten off meds and have been symptom free for 14 months! I was on asacol for 14 straight years.

      I must stress, however, that I take one ULTIMATE FLORA CRITICAL CARE by RENEWLIFE 50 billion strain probiotic, every day, on an empty stomach, and then no food for at least half an hour…AND…fermented L-glutamine powder…also every day, also on an empty stomach.

      I am convinced these two things will keep me in remission forever!


  17. I was diagnosed with UC 3 days ago. I am on day 40 with all the symptoms. The worse one is an intense pain in the middle of my abdomen. The doctor gave me a strong painkiller. Is the sharp pain also a common problem with you? I think I can handle going to the bathroom a lot, the bleeding, the big belly and the rest of it but I am concerned about being effective at work given the constant pain.
    Is the sharp pain also a common problem for you?
    Do you take a painkillers every day?

    1. Hi David,

      I’m super sorry to hear you’re in such pain right now. And I wish there was a magic bullet that could take that away instantly.

      I most definitely remember sharp pains back in late 2008 and early 2009 when I was severe with my symptoms, and I know many others have commented on that same thing. There was even a time when I was taking some vicodin pain pills that were prescribed for the pain.

      Good news is that the pain won’t go on forever. It’s often a direct correlation between symptoms and how active they are. (And, there’s a good amount of us who get sharp joint pains from other inflammation as well. Can be really painful too)

      Keep your head up, this will pass and you’ll be better again like you remember,

  18. Hi,
    I have been diagnosed with IBD two weeks ago ( UC or crohn’s – doc is not sure). I am on Lialda and was recently put on Uceris. Doc performed following blood tests
    – ESR – higher than normal
    – Vit B12 – higher than normal

    I am not sure why B12 is high. I thought it would be low. I’m scared if I have some other condition as well. Does anyone here have any experience with these tests and what they mean with respect to IBD?

    Doc has also ordered Calprotectin test.

    Lialda has definitely reduced my bowel movements. But I do see a lot of white mucus since I have started taking it.

  19. I’ve had UC since i was about 22. I smoked for until 2 years ago before my daughter was born. Every time i quit smoking, 3 weeks later i would flare. But when i did smoke, if i got sick (mucus, coughing..ect) i would flare for 3-4 weeks. That would only happen in the fall when the weather turned. Once i quit smoking, i went to the doctor to get on meds. I look at pharma meds as a bandaid and not natural healing. There’s no way blood transfusions and all these drugs available for UC is going to put a stop to this. Yes, i see that it can help your daily life but i took that stuff for a lil over a year and it barely helped. What helped me was following a low FODMAP diet, cut dairy and get that nasty wheat out of my life. It helped my UC alot, then i knocked the little bit that was left out with a herbal treatment. that put it in “remission” or whatever they say it is. I say it goes away. After it was gone, i didn’t listen to my lifestyle change because i like pepsi alot and i like to drink beers, eat wings..ect.. so, i got a bug a few weeks ago at the peak of my diet fun and i started flaring. my fault for drinking pepsi and all that fun stuff but i went back to my herbal treatment and a few days later its barely a flare, just some diarrhea and a lil blood. But anyways.. hope this helps. I have UC and I refuse to let the doctors give me synthetic drugs when i know herbal combinations work way better. Take advantage of this dis-ease by forcing yourself to a healthier lifestyle.

    marshmallow root
    slippery elm
    camomile tea
    i also use bentonite clay
    it’s healthy, it doesn’t have side effects like synthetic drugs.. it’s just a better alternative.

    good luck!

  20. I just found this site and I dont feel so alone now. Wow stress is a killer it seems all my illnesses seem to revolve around stressful events, and quitting smoking lol. I became sick with IBD in my late teens it was the big D pain and blood. Went pancolitis a few years later, great GI that worked with me to get it under control..shhh he even recommened I start smoking lightly again since this all started when I quit the first time. It took a while but got it all under control I thought, then years later decided to quit again. And had a nasty flare that lasted 2 years had to go on disability and was set for the operating room. Then I grabbed a pack of cigs because I felt I had nothing to lose and within a week my bleeding had almost stopped and my D was going back to normal formed. I still went 4 or 5 times a day but at least it didnt look like a crime scene.

    Fast forward a few more times I gave up the cigs and had flares I knew then cigs had addicted more than just my lungs and brain. They was something in them that kept UC on a leash, funny cause its the opposite for people with Crohns. I developed Graves disease next stress event when my dad passed away, and 10 years later have now developed another set of autoimmune disorders. I am in the lupus scleroderma crossover disorder group now, but while this was active my UC was gone completely.

    Now that is coming under control, and I am flaring with UC for the first time in years. And I am panicked, and I hope I can get it under control again. I am living alone now, and very rural so an emergency would be very dangerous. One thing that also worked in the past was canned carrots. Cooked canned carrots have an soothing effect on deep ulceration from what I have experienced. And I did some checking into why, there is a document that was published years ago about a certain sugar or protein in carrots that when cooked acts like a sealant or repair fiber on intestinal ulcers.

    So no joke I ate a can of carrots every day when I was sick and it seemed to work for me. Ate them so much I got sick of them lol, so I stopped for about 8 months and started to get the old flare sensations back. Got back on them and now have about 3 servings a week seems to help. Of course i am flaring now because I hit a stress event started eating all kinds of junk and not eating decent at all, plus quit smoking again lol. I hope my old orange friends can help me through this one. I dont care what mainstream medicine says, food/stress/ habits/exposure can all make or break this disease. Here is where I started with carrots..

    But if you research you can find more up to date stuff like this…

    It becomes monotonous to have to eat the same things all the time, but if it works for even one person with this debilitating disease its worth it. Wish me luck in this new flare, and I hope the best for everyone that has this.

  21. Wow, read all these souls testimonies and 100% relate. Feel for all contributors and stay strong.
    I take Sulfasalazine EC 500mg.
    2 tabs 2xs a day and mercaptopurine (6-mp) 50mg 1 tab 2xs a day. After many other meds failed. Have UC for 4 years now on and off remission. Trust in prayer gets me through.
    Always mental stress before travel and know every spot I can find restroom just incase. Love to all you guys. Again stay strong.:-)

  22. IMPORTANT ! Notice all the different reasons ? If people would simply remember that they ALL had absorbed ( one way or other ) ALCOHOL before their flare-ups !

  23. Hi All,

    I’ve just been diagnosed. Though it was a “flare” which notified me, I think I’m more on the mild side of the scale currently.

    A huge thank you to everybody that has contributed – truly a God send for me at this moment in time. I’m uncertain about what the future holds (from this perspective) but have resolve to keep pushing and fight against this condition.

    If and when it makes sense, I’ll provide updates so anybody else that has just been diagnosed can see what one person’s journey looks like. There seems to be a lack of consistency across cases, but I hope sharing my perspectives, as you al have, will help somebody one day (as you all massively have for me).

    Thank You

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