Symptoms

Adam iHaveUC colitisWhat are possible signs and symptoms of Ulcerative Colitis you might ask?

Well, here is a list of some of the common colitis syptoms that many UC’ers run into on a regular basis when the colon is actively inflamed.  Now remember, you don’t have to be experiencing all of the symptoms to be in the middle of active colitis, but often people living with the disease will notice several things going on at once.  The good news is that flare ups don’t last forever, and a sense of normal bowel movements and normal living will come once again.

  • Much more bowel movements per day compared to other people you know(2-3 times per day, not a big deal, 5-10 times per day consistently is a big deal)
  • Consistently loose stools
  • Loss of weight
  • Low energy levels
  • Waking up during the night to more bowel movements
  • Bloody stools
  • Using the restroom right after having a meal
  • Running to the restroom and sitting down on the toilet JUST IN TIME
  • Not wanting to be out in public for fear of not being near a restroom
  • Being in your bathroom for 4-5 hours per day (man it was horrible)
  • Cramps in your abdomen
  • Enemia
  • Night sweats
  • Severe Headaches
  • Dark urine
  • Depression (often living with ulcerative colitis symptoms for a long amount of time can make anyone depressed)
  • Fear of going out in public and having to use public restrooms
  • Joint Pains

If you are reading this website and have any other ideas about symptoms to put down here, please fill out the form on this page and submit them on over.  Who know’s you might really help someone out you don’t even know!

Here are the details about a recent iHaveUC.com survey that was dedicated to UC Flare Ups and knowing when you are in a flare up: Colitis Flare Survey Results

25 Responses to “Symptoms”

  1. carol Says:

    I have suffered digestive problems for some years and had food sensitivity diagnosed 8 years ago (yeast, dairy and tuna) but have since had irregular bowel movements , blood every time I go to the toilet and bloating and stomach pain, I recently had an endoscopy and 3 biopsy taken, the guy said it resembled colitis , but I have to wait for results.But (which I forgot to mention when I went for the test) the other thing that I have had for the last 2 years is a very sore tongue, which is cracked and coated white, I also often feel tired with headaches. Having looked at various sites re colitis and crohn’s I wonder if anybody else has had the tongue problem. I guess the digestive tract begins with the mouth?
    BTW I really like your site :-)

    Reply

    • Melissa McDowell Says:

      White coating on the tongue could be thrush. I had it once, I dissolved chewable vitamin C in my mouth and it was gone. Dunno about the cracking.

      Much digestive difficulty is due to gut flora/fauna (I forget which is correct word) being overgrown, usually in response to too much carb in the diet. This is what causes GERD, too.

      Look up: Leaky Gut Syndrome.

      Visit: http://coolinginflammation.blogspot.com/2010/03/human-gut-flora-genes.html

      Reply

    • nicole Says:

      yes i have had that tongue problem i went to the hospital to see what it was and the doc told me it was from the steroids

      Reply

    • Erica G Says:

      Hi Carol,

      I also have a cracked white tongue, due to taking antibiotics. If your tongue looks overgrown upon further inspection (meaning that the…oh I can’t remember what my dentist called them, but on the back of your tongue, if the tiny fibers look taller than normal) then you probably have a yeast infection in your mouth. This is very normal, especially if you have been on antibiotics or steriods, or if you have digestive issues. Fermented foods which contain bacterial cultures are extremely beneficial for this. They are very easy to digest, and contain biotics which regulate the bacterial and yeast populations in your intestines, and aid in digestion. It will probably help with your digestive issues as well, as fermented foods help most people with digestive issues, especially if yeast or bacteria overgrowth is apparent.
      Try eating some fermented food with every meal. If you can get ahold of kefir grain, you can grow this yourself and make fermented vegetables (like saurkraut, nothing scary about it, tastes awesome, makes you feel alive again!), as well as fermented milk, which does not contain lactose.

      Cry durd cottage cheese may also be helpful. I recommend that you look up fermented foods for this and your digestive problems, as they are very important for people whose digestive systems are weakened, as they do most of the digesting for you, and you just have to absord the nutrients, and they repopulate the good bacteria, leaving you free of yeast overgrowth!

      Also, sugars and starches are not easily digested by people with GI isuues. These carbohydrates feed yeast, particularly when they are not digested properly. Cutting back on starches, grains, and refined sugars with leave the yeast with far less food, and greatly reduce the chances that they will over populate.

      Another good thing to do is to drag your toothbrush along your tongue, from back to from, in order to break up the populations of yeast, and this will remove some of them. Do this consistently and you will feel much better.

      I have Crohn’s and all of these things have helped me tremendously, both mentally and physically! If you are as sick as I was, it’s definitely worth giving all these a shot. I saw huge improvements even though I am not on medication (besides the antibiotics, hence the white tongue). Fermented foods with every meal works miracles for a weak immune system!

      All the best,

      Erica

      Reply

  2. Jonz
    Jonz V. Stoneroad Says:

    I can relate to this on so many levels. My health ailments since childhood all seem to stem to UC. When I was young, I had constant ear infections, boils, and diarrhea. Then the doctors related it to my tonsillitis and had them removed. Then in my early teens, when I moved to Hawaii, I began to experience a rash on my body that would turn into blisters whenever I was out in the sun. They never knew what was the cause other than an allergy to ultraviolet light. In my twenties, it was severe depression which lead to a battle with alcohol, drugs, and one failed suicide attempt. When I went sober, I began to experience bloodied stool, excessive tiredness, mood swings, chronic arthritic pain, and bruises and cuts that wouldn’t heal properly made me wonder if this was because of my not depending on drugs or alcohol. It was years later when it was revealed to me that UC is an underlying variable.

    I still have the fear of not going out much because of my bowel urgency but I make the most of it when I address it to the company I am with and then I relax better. I still am in Hawaii and while I cannot go out in direct sunlight for extensive periods of time; I’d rather be in “paradise” than to be somewhere else.

    I have learned there are over 100 different symptoms of UC and it varies to each person. We just make the most of it and keep a sense of humour. Yes, it is hard at times but it does help bring peace of mind.

    And finally, remember, build up your immune system!

    Reply

  3. tracy Says:

    dont forget nausea from the pain of going to the bathroom and also fevers. I have had uc now for 18 years, im 32.

    Reply

  4. Wendy Says:

    Has anyone ever wondered what causes UC? We all have symptoms, but they are brought on by SOMETHING that causes our colon to react with mucous production, swelling, tenesmus, bleeding,etc. Drugs and supplements may help, but take a while to work.

    Honestly, I believe my UC is brought on by stress. Doctors don’t want it to be that simple, so they deny stress is a cause. How may websites have you looked at that say “UC is not caused by stress.”? How many on this site subscribe to alternative therapy like yoga and meditation and say it works? I am living proof that stress caused my UC.

    Are there ANY physicians or groups researching the CAUSE(S)?

    If a cause was determined, then treatment would follow, but instead, we suffer in silence and denial, only hoping it will go away. Glad when it remisses, but stressed, sad, or angry upon its return. Let’s stop the cycle. I’m tired of this already and only a few days in. Does anyone know who we can lobby to do research?

    Reply

    • bill Says:

      I completely agree with Wendy. I can point to stress in each of my major flares. Diagnosed in 1999, my job at the time was complete stress bath all the time. Last December I went into the hospital after almost 5 year remission (other than a few minor symptoms), and guess-a new job with stresses that were unmanageable put me there. Stress is the cause for my flares every time. Now I’m on immuran, asacol, and trying to retrain for a new career and the stress of this transition has me with symptoms again. I hope this doesn’t derail my chances to start over. And I am really taking care of myself-working out 4-5 times a week, running once or twice a week, no alcohol, minimal coffee, minimal processed foods or fast foods, lots of water and lots of good sleep. I know that stress triggers some reaction in my body that creates the flare and I wish I knew how to manage. Otherwise I am going to end up unemployable.

      Reply

    • Sabine
      Sabine Says:

      absolutely agree to stress. It does not matter what I eat, does not matter what medication i take…. stress/destress is the trigger!

      Reply

    • Kara Says:

      I agree. So frustrated – I have had UC (known) for 10 years. I started smoking and it stopped my symptoms. I have quit twice before and within weeks the symptoms are back. I quit two weeks ago and started noticing symptoms on Monday with a full on flare beginning yesterday – it isn’t the nicotine – I have been using vapor (electronic cigarette) and gum. Have any doctors studied tobacco to figure out what it is that relieves our symptoms???

      Reply

  5. Brittany Says:

    I can relate. It seems like I have all these problems that seem unrelated to colitis, but really end up being related. Anyone ever have kidney stones? I was told kidney stones are due to colitis. Something about some of the fat that is supposed to come out in poop, doesn’t always for people with UC. It stays inside and then bonds with other things causing the stones. I had a 9mm stone stuck while trying to come out which was quite painful. I have more, and have passed quite a few.
    And agree, with stress being the trigger.

    Reply

  6. Eric Says:

    I’ve suffered with UC for over 20 years. I’ve flared under times of stress, and enjoyed complete remission for many months during times of major stress. Currently I’m flaring again (or maybe experiencing the same flare with a prednisone timeout), and I have drastically reduced my stress by changing jobs and outlook.
    I can eat, drink anything during remission between flares. And during flares can eat next to nothing for months and still bleed (like now).
    It makes no sense that I can fathom.
    Best of luck, one and all.
    May a toilet ALWAYs be within reach.

    Eric

    Reply

  7. Lea Says:

    Symptoms, just recently that’s new I feel a crazy fatigue that just puts me in a “need sleep” zombie mode, anyone else?

    Stress is big, I use a supplement Adrenal Assist that helps with my stress and I watched this film on Netflix called Food Matters and a doctor talked about the B vitamin Niacin for depression, it really works! Hope that will help someone today!

    Love,
    Lea

    Reply

  8. Tony (UK) Says:

    One symptom I did not reckon on and which I’m going to have to see my doctor about, is just as embarrassing to talk to the unenlightened about as some of the worse symptoms of UC, itching. Just this past couple of weeks I have been getting the most horrendous inching around my back passage, so bad its now red raw and the only short term relief I can get is by applying antiseptic cream. I know when getting a flare one can get a bit sore but this is something else, this is pure agony. I’ve tried everything I can think of to stop the itching, I’m scrupulously clean always washing myself after a movement and always wearing clean underwear, maybe I’m too clean I don’t know. Has anyone else had this problem? Would be interesting to hear what they did about it.

    Reply

    • Adam Says:

      Hey Tony,

      Sorry for the late reply here, but just noticed your itch.

      Man, I’ll tell you, I haven’t had it recently, but back in the day, I for sure remember what you’re talking on, and heck yeah, it can drive you crazy. Feels like you only have to tap the toilet paper back there and blood’s going to come running out.

      I’m not sure exactly how it went away, I didn’t do anything special, but it did get better on its own for me. My wife bought me some time back some antiseptic(ish) wet wipes type of things that i’d use when times were bad. Not sure why, but the wetness seemed to soothe the body (and mind for that matter).

      take care amigo,

      Adam

      Reply

      • Tony (UK) Says:

        Hi Adam, the itching got so bad I did eventually see my doctor who proscribed a steriod cream which did the trick. I think when one has our problem the skin can get a bit tender from the constant rubbing with loo paper and even after taking the utmost care, infection can still sometimes get in. Nice to see the site doing so well and your number of subscribers increasing. Cheers Tony.

        Reply

        • Adam Says:

          Hey Tony,
          It’s crazy how steroids/creams can often do the trick for so much UC related stuff. Way cool to hearing from you (you know you are one of the ancient original users of this site don’t you!) Have an awesome holiday season/new year, and wasn’t long, but did a quick pass by your country (heathrow) yesterday for a layover briefly(dang that airport is huge man).
          Take care Tony and happy rest of ’12 and an excellent ’13 to you and your fam.
          -Adam

          Reply

          • Tony (UK) Says:

            My apologies Adam, I’ve only just seen your reply, terrible I know sorry. Yep Heathrow is something else, fortunately I’ve not had any mishaps there but I did in Gatwick, the other main London airport, bit embarrassing but there you go, can’t be helped. Hope wherever you were going was great. I was in the States in August, starting off near you I think but only overnight, Santa Monica then drove up Route 66 to Chicago, down to Virginia, up to New York then back to Chicago and from there by California Zephyr to San Francisco. Absolutely fantastic and the only place I was really ill was when getting to SF, had a few bad days on the way but not too bad. Fortunately had a good understanding friend from New Zealand to help on the days I was ill. I really love America and American’s, everyone was so friendly and helpful, can’t wait to get back there again when I can afford it.

  9. Erica Says:

    I am brand new to the site and didn’t know where to post this question. I have only had 2 flares, the initial flare when diagnosed in 2007, and now I am in another flare. Since my meds were working so well I figured the docs were wrong and I don’t have UC, so I stopped the meds, and well, I guess they were right because I am now battling a flare for the last two months that I cannot seem to get out of. Anyway, I have never heard of anyone having this symptom and my docs think I’m nuts, but during the initial flare and now I have such severe breast tenderness that I know is related to the flare somehow. I was wondering if any females out there have experienced the same thing during a flare?

    Reply

    • Adam Says:

      Hi Erica,

      Thanks for joining the website. I’m male obviously, but I wanted to add that several years ago, and even on rare occasions since in remission, I have felt strange feelings in my joints, and upper chest area near my collar bone from time to time.

      Probably not the exact same stuff you’re talking about, but maybe very similar types of soreness and tenderness. From the different doctors and auto-immune specialists I’ve spoken with, it seems to be that arthritis type of symptoms are rather common for people wit UC, so that might be what we are experiencing. But who knows, maybe some of the women who follow this post might have some ideas.

      best to you in geting out of your flare,

      -Adam

      Reply

    • Jen Says:

      Hi Erica,
      My flare has totally messed with my cycle making my hormones all over the shop, I asked the doctor about my hormonal behaviour etc and she said could be the UC itself or the steroids I am on- don’t know if you are on any but 40 mg of Pred and 9mg of budesonide and I could not sleep on my front for the breast tenderness.
      No real ideas to resolve it but thought I’d let you know you’re not alone x

      Reply

  10. GB Says:

    Hello all,

    I have UC and have had this for the last three years. At the moment it is quite settled however my anxiety nd my social fear is taking over my life. I have a fear of not making it to the loo on time when I am out and am constantly thinking of where the nearest toilet is, and although I dont require it i work myself up so much that I do. This mostly happens when I am stuck in traffic or if the train just randomly stops for a while- as I then get scared that I need the toilet.

    Any help or advice will truly be appreciated please as I am longing to have a normal life with my family nd friends without having a fear of needing the toilet.

    Many thanks in advance x

    Reply

    • Adam Says:

      Hi GB,

      I think you are like just about all of us who have UC especially when in flare up type situations and in cars.

      I am currently on a 3 month road trip and I can tell you this, having a bucket in your car, and some toilet paper and some big trash bags might help you out mentally. I have no idea what type of car you have and if that’s even possible, but it may be a great solution for you. I myself have not had any active symptoms at all on this road trip, but still, just knowing I have a portable bathroom wherever we go is pretty cool.

      There’s lots of surveys we’ve done on this site with ideas and tips from thousands of others UC’ers, you may want to check some of them out here:

      http://www.ihaveuc.com/category/ulcerative-colitis-survey-data/

      best of luck to you,

      Adam

      Reply

  11. Jen Says:

    Hi GB,
    I too am having the complete stress/situation triggering cramps etc when im out, though my UC is still v much active. To relax a little when I go out and to give my pills chance to do anything my doc prescribed Imodium and codein to slow things down. I also have an emergency kit in the car and wear special “knickers”… It’s humiliating I know but once I put them on I know it won’t be running down my legs etc if it happens and it does the trick of being my mental back up plan. I try’s meditating and relaxation breathing if I start panic out and about. Hope things improve ASAP :-)

    Reply

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