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Do You BLEED All the Time or Just in Flare Ups?

Introduction:

I was diagnosed with UC about 4 years ago. I am a single mother of two. I own a hair-salon that i work at. I have a blind mother and handicap brother that i oversee. I know this disease is flared up by stress. So i need help to find ways to relax..

Some more about me:

I am from South Carolina and I’m a salon owner of a hair salon. Myself and my fellow loves to ride motorcycles.

Current Colitis Symptoms:

Night sweats. pain after eating. bleeding ( have been for 1 1/2 years straight). frequent bathroom visits with loose stools to diarrhea. cant stand on my feet at work for any substantial time without pain. fatigue. etc..

Do You Bleed All the Time

Would like to share my symptoms and history. I would like to know what people do when they had insurance and now don’t have any. How to cope and survive it.

I had my first major flare up about a year after i was diagnosed. Was sent to hospital for 8 days. I had an eye opening experience to the severity of this disorder. It was the first time i thought this disorder could kill me. I showed no normal levels of any tests they ran. I had symptoms of suffocated and lack of oxygen. which doctors thought i had clot on my lungs which was dismissed to later determined that my esophagus had ulcers from acid from my stomach caused by lack of food in stomach and acid refluxed up. That to me was the scariest thing (next to the sight of amount of blood in toilet.) and the closest i have ever felt to suffocating. I had alot of time with those four walls to take in this disorder. In the days there i had nutritional education. Found out i was eating things I shouldn’t have even if it made me feel good at the moment. I have a personality to care for people and cant sit still for more than 30 minutes at a time.(until my flare ups put me down). i have t wo teenagers and a salon and home to take care of. I have a wonderful man in my life that is concerned about me all the time. He doesn’t know to much about the disorder but what he does knows worrys him. We will be married shortly and im looking forward to that part of my life to finally calm down. My question to you is do any of you bleed ALL the time or just in flare u?ps? ? How long does most flare ups last?

Medications:

Sulfazalzine. folic acid and predisone at times

written by Marci

submitted in the colitis venting area




45 Responses to Do You BLEED All the Time or Just in Flare Ups?

  1. Artie April 3, 2013 at 8:25 am #

    Hi Marci,

    Sorry to hear you have UC and are dealing with this too. we wouldn’t wish it on our worse enemy. For me, I have been in a major flare for 2 1/2 months and have been bleeding a lot. At one point 15+ of bloody D for weeks straight. However, I may have turned a corner and have started to slowly get better.The bleeding has slowed down to only a few times a day that I can see.

    That being said, I do believe that during the last year I was bleeding (with somewhat normal stools) but did not pay much attention to it. But I do think everyone is different.

    My cousin would have blood in her stool everyday for years and meds did not help. She then stopped taking meds and went on vacation and the bleeding has stopped. Go figure.

    One last thing.. I am currently taking Remicade, Lialda and tapering off prednisone. My symptoms got worse while on all of these but I still continue to take them for some reason. My feeling is that these meds really are not helping but my diet and body is getting better on its own whether I was taking meds or not. If you look at any of these meds “stats” you will see that they only work 20% better than a placebo. Almost 20% or people go into remission on the placebo during the same time period as the trials.

    Artie

  2. Tim April 3, 2013 at 11:15 am #

    Having UC since 1991, I can tell you blood should only be present during a flare. During remission you should be “normal”. Everyone is different a flare can last a short period of time or an extended peroid. The goal is remission! Good Luck.

  3. UC Family Boy
    Uc family boy April 3, 2013 at 11:28 am #

    Yeh as Tim says blood should only be present in flare ups…and flare up times you tend to know as various symptoms are at large. I have been on a continued flare nice this time last year with only intervals being on prednisone and some diet restrictions.
    Reason why my flare has been ongoing is ultimately I believe is due to a thin, possibly mostly none existant mucus separating the bacteria and cells… So until this is addressed I feel I will always face being in a flare (though diet helps manage this).

    With regards to stress, maybe reflex on all the good things in your life, that will make you smile and hopefully relax you

  4. Lindsey April 3, 2013 at 1:55 pm #

    I would like to know more about this, also. I have been in what I think is a flair for about a year and a half. My additional question would be is there a difference between actually bleeding when you go to the bathroom and just passing mucus? Lovely question, I know :) When I am eating better it shifts from blood to mucus. Is this an improvement???

    • Angela April 3, 2013 at 3:50 pm #

      Yes there is a difference between blood and mucus as I think it depends on the type of damage that’s happening. Also, a really important point about blood in your stool that I don’t think has been mentioned yet on this website is the color of the blood. If the blood is dark it means its coming from higher into your intestines (perhaps the start of your colon) whereas bright red blood means its coming from the lower portion of your intestines. No bleeding is a great thing! Any bleeding is a def. sign of a flare (whether its from UC or your med bothering you) and should be dealt with. Many people on this site would note that if you’re not careful with the bleeding you can end up very anemic. Keep with what you’re eating when you don’t have blood!

  5. Tim April 3, 2013 at 3:38 pm #

    For me… one of the first symptoms leading to a flare is mucus. Then blood sometime thereafter along with all the other fun stuff. I believe if you’re having a flare without blood that’s GOOD!

  6. sher April 3, 2013 at 3:45 pm #

    MARCI,

    Hi, I just want you to know a lot of people can relate, including me. I went through the same thing you did, hospitalized for 6 days, blood transfusion, every medication out there. I had a continuing flare up for several years!!!! I isolated myself, declined every invite to social events. I was diagnosed about 13 years ago. For the past year I have not had a flare up at all!!! I decided to go gluten free and all my symptoms slowly disappeared. I went from bleeding profusely, taking up to 20 pills a day, 6-10 bathroom trips, to NO MEDS, 1 bathroom trip, and no bleeding ever! I pray to god it stays this way and honestly I never thought I would get better. I’m not sure what your diet is, but gluten free helped me immensely!! I can occasionally cheat, without repercussions, but I try not to very often, fearing the worst! I can’t say it cleared things up over night, but within weeks I noticed the disappearing of the blood, and within a few months my overall bathroom trips lessened. I also take B12, Vit E, Evening Primrose Oil, zinc, limit sugar and dairy to a minimum. I hope this helps, I know this can be tough, just keep your head up.

  7. bev April 3, 2013 at 5:37 pm #

    Everyone has pretty much answered the question…blood equals UC activity, unfortunately.

    Try fermented L-glutamine powder. It stopped my bleeding within a couple of days, however, it may take longer. Mind you, I was already taking a GOOD probiotic for a month prior, as well. That took every other symptom away, but the bleeding lingered. I was recommended the L-glutamine and I’ve never looked back…

    Cheers
    :)

    • Tim April 4, 2013 at 12:31 pm #

      Bev

      I’ve been taking 500 mgs. of L-Glutamine daily, since you mentioned it on this site. However, I cannot locate the “fermented” type. How important is using the fermented version as opposed to the basic type?

      THANKS! Tim

      • bev April 4, 2013 at 1:42 pm #

        Hi Tim,

        I’ve been asked this question before, but unfortunately, I’m not sure! Maybe you can find the answer online?

        I do know that fermentation equals good bacteria. I wish I had the answer!!

        Anyone else know if it matters, or what the difference is, if the L-glutamine is fermented?

        And…what does the ‘L’ stand for??

        Cheers…sorry I can’t be of more help here, Tim.

        :)

        • Tim April 4, 2013 at 1:56 pm #

          Bev

          Thank you for your response

          • bev April 4, 2013 at 2:24 pm #

            No problem…again, I only wish I knew if there was any difference in taking the fermented.

            :)

        • Ken April 19, 2013 at 1:28 pm #

          Bev,

          I wanted to know also so I looked it up. Here are some L Glutamine tidbits:

          The following quote comes from a section of the book Digestive Wellness by Elizabeth Lipski called Restoring Gut Integrity.

          1. It can be made chemically or through fermentation. So fermented Glutamine refers to the way it was produced.

          2. Fermented is thought to be more pure, as chemical production may leave solvents. This is conjecture, and if you are using regular and it works, then it’s good. Try different brands, and use what works best for you.

          3. Glutamine is produced by our bodies through the foods we eat.

          4. Glutamine is the most popular antiulcer drug in Asia today. The digestive track uses glutamine as a fuel source and for healing. It is effective for healing stomach ulcers, irritable bowel syndrome, and ulcerative bowl diseases.

          5. Double-blind studies have shown that glutamine supplementation boosts immune function and fights infection in endurance athletes and critically ill patients.

          6. Glutamine and glutamate have profound effects on neurons responsible for memory. Preliminary studies have shown L-glutamine supplementation to be helpful in improving memory in patients with Alzheimer’s disease, and in reducing cravings for alcohol in alcoholics.

          7. L-glutamine reaches the starving brain within minutes and can often immediately put a stop to even the most powerful sweet and starch cravings. The brain is fueled by L-glutamine when glucose levels drop too low. Don’t be intimidated by the strong effects of supplementation. L-glutamine is a natural food substance; in fact, it’s the most abundant amino acid in our bodies. It serves many critical purposes: stabilizing our mental functioning, keeping us calm yet alert, and promoting good digestion.

          8. Too much glutamine will probably constipate you, so that’s a good gauge of how much you need. Many people find that they feel stronger and have more endurance when they take glutamine. Recommended doses are from 3-30 grams.

          Thanks,

          Ken

          • bev April 19, 2013 at 1:46 pm #

            Thanks Ken!

            L-glutamine sounds pretty wonderful, doesn’t it??

            Cheers
            :)

        • Dania December 19, 2013 at 6:17 pm #

          Hi Bev,
          How much dosage you take from the fermented L -glutamine powder. I have been flaring like crazy. I’m taking the ultimate flora probiotic 50 billion once a day before breakfast, vitamin D. follow veggie diet.
          recently I was diagnosed with breast cancer. I’m overwhelmed
          don’t know what to do????

          • bev December 19, 2013 at 10:45 pm #

            HI Dania…omg…I’ll bet you are overwhelmed…wow. You are going thorugh alot. In a flare, you can take up to 8 scoops of the l-glutamine powder (the scoop is in the tub). I never took that much, because I was pretty much in remission when I started it. I take one to two scoops just to maintain remission every day.

            I really wish you the very best, Dania. I’m so sorry that all of this is happening to you.

            Bev

    • UC Family Boy
      Uc family boy April 4, 2013 at 12:54 pm #

      I endorse Bev L Gutamine stopping the blood thing as on my ongoing flare I in my hour of sadness and loneliness started comfort eating and having some illegal scd foods and the blood increased greatly, most I seen for a long time…even though I been flaring the blood and mucus has been managed with diet…but it increased with the illegal grub…I don’t know when it happened but I stopped taking L Gutamine awhile ago and only went back on it when I saw the Blood on Monday, well by yesterday the blood has disappeared completely.

      • bev April 4, 2013 at 1:39 pm #

        Yey L-glutamine!!

        It’s fantastic!

        • Dania December 17, 2013 at 11:07 am #

          Hi Bev,

          Where do you get the fermented L- glutamine from?

          • bev December 17, 2013 at 5:19 pm #

            Hi Dania,

            I actually just buy it at my local vitamin supplement store right off the shelf!

            It is called North Coast Naturals Fermented L-glutamine. I buy the unflavored powder. I think that you can order it online as well?

            Bev

  8. Joe April 3, 2013 at 5:59 pm #

    I am NOT in a flare-up and have blood. So UC is different for all people. Diet is paramount to controlling symptoms. Paleo, GAPS or SCD – they all seem to help. I feel the colon will take time to heal, therefore the sight of blood is not good, but is does not necessarily mean you’re in a flare-up. Your diet is probably making you bleed, especially if you are digesting complex carbs or sugars. Probiotics and high strength fish oil help as well. Peace.

  9. joanna April 3, 2013 at 6:42 pm #

    if you are bleeding, you are flaring. there isn’t any way around that. there is inflammation somewhere in your colon/rectum. it’s not like “oh i’m in remission but i still have blood.” bleeding is a sign of NOT being in remission. the only thing that has helped me totally get rid of bleeding is blackstrap molasses. i take 1 tbsp at night with a vitamin C tablet. my bleeding went away in 2 days. not sure why it’s so powerful- it’s just sugar- but the stuff is like magic.

    • bev April 3, 2013 at 7:10 pm #

      Yes, I’ve heard of blackstrap molasses helping too, Joanna.

      Good tip.

      :)

      • joanna April 3, 2013 at 8:52 pm #

        it’s crazy, bev. sometimes it’s the most random things that you try. it’s pretty cheap, too, compared to a lot of supplements.

        • bev April 3, 2013 at 9:56 pm #

          Right??

          :)

  10. Polly
    Polly April 4, 2013 at 6:53 am #

    Marci,

    So sorry to hear about your current troubles.
    I agree with Bev on the probiotics and the glutamine powder.
    Also, please make sure you are getting enough Vitamin D. It is a powerful anti-inflammatory!!!

    Hugs from Minnesota,
    Polly

    • bev April 4, 2013 at 7:04 am #

      That’s right Polly…how could I forget to mention vitamin D?? I take it every day!!

      Bev

  11. Tracy April 4, 2013 at 3:01 pm #

    I also bleed during a flare up. I’m moving out of a severe flare up that involved chronic pain in my joints, night sweats and constant bleeding. In addition to the Apriso I take I also use Fleet enemas which have helped. I also drink Kefir in the morning and have omitted all nuts but I eat nut butter and all gluten. I stopped drinking coffee and I drink peppermint or camomile tea. The change has been helpful and I feel great. I also use unsulphured black strap molasses in my tea when my iron is low and like mentioned above has really helped me heal on the inside. Good luck!

    • Tim April 5, 2013 at 9:50 pm #

      Tracy

      What is is the purpose of using a fleet enema? To flush your colon? Why? Just wondering…

  12. Angela April 4, 2013 at 4:10 pm #

    Hi Tracy,

    I’ve also given up nuts. I just can’t handle them. I wanted to recommend matcha green tea to you since you’ve stopped drinking coffee and drink teas. I discovered it when I was in Japan and if differs from regular green tea because instead of steeping it you mix the fine powder straight into your water. By drinking everything you get considerably higher health benefits. I am in love with it and it gives you a nice perk of energy.

    http://www.matchasource.com/matcha-tea-health-benefits-s/14.htm

    It’s more expensive so I make little shooters of it every morning instead of a full cup.

  13. Joe April 4, 2013 at 7:12 pm #

    Okay…all the experts out there think bleeding is not in remission. Answer this then – my bi-weekly blood tests come back with no inflammation. I poop one formed BM a day. I have been gaining weight consistently. I am feeling healthy. And I bleed sometimes. Sounds like these ‘alternative’ approach people are believing the BS that the doctors say. Whatever…peace

    • bev April 4, 2013 at 7:36 pm #

      Joe…I LOVE YOU!! (Sorry for the over reaction here) I should say that I LOVE people LIKE you!

      Believe me, I’m not convinced by anything that the doctors say about UC…this could indeed be true…why are we so quick to believe all the crap they try and feed us when they seem to know so very little about this condition??

      I consider myself in remission…however…when I eat a bowl of real wheat cereal, I will have blood the next day…no cramping, formed stool…when I don’t eat straight wheat, I never bleed!

      Food for thought…no pun intended…

      Thank you, Joe!

      :)

    • UC Family Boy
      Uc family boy April 5, 2013 at 1:38 am #

      Joe I’ve had bi weekly blood tests done which came back with no inflammation though I have been constantly in a flare since first going to my GP 13months ago. I have been dealing with back and forth UC. Relapse, remission, relapse, remission… But even in remission I felt I wasn’t 100%. But even in relapse I didn’t bleed, I’m not a bleeder unless I let my diet get out of control but I knew I was flaring

      I guess what you are saying is if a none UC person was having 1 BM a day which looked normal and felt healthy but saw blood than that is fine,that person shouldn’t worry or go get checked up?

      This was my sister 8 years ago but she was smart enough to notice this wasn’t right and after extensive tests they found mild active Chrohn Colitis.

  14. Lynne April 5, 2013 at 5:58 am #

    Perhaps a small amount of bleeding with a normal bm could be hemorrhoid related?

    lynne

  15. Ann April 5, 2013 at 8:00 am #

    okay…here I am again…just read all the posts about this bleeding stuff..Lynne, good comment about the hemorrhoid possibility but I think the docs should be able to diagnose that too. Us UC people need to know exactly where that blood is coming from and why. I inspect my poo every day, (that’s how I flushed my earring down the toilet!) It is a constant effort to keep up on exactly what is going on in there…I do notice and am on my guard especially when I am not seeing blood but just don’t feel quite right if you know what I mean? I get a little achy especially on my left side and get a funny/metal taste in my mouth. Joanna, don’t feel bad about airing your feelings at Joe, he’s a big boy…it just shows how much you care…Hang in the Joe…Peace, Hope and Tough Love! Ann ;)

    • bev April 5, 2013 at 8:15 am #

      Great post Ann!

      Fab…

      :)

  16. Ann April 5, 2013 at 8:14 am #

    One more thing. I believe we are never truly in remission blood or not. It’s part of who we are. It could be worse. I find that even though I have UC, I am healthier than most people I know. I exercise when I can which is almost everyday, eat a basically healthy diet and am thankful for my good life despite this awful disease…Cheers! :)

    • bev April 5, 2013 at 8:16 am #

      Again…right on point Ann…

  17. shelly in maine April 5, 2013 at 4:06 pm #

    And furthermore…I will add in agreement with uc fam….my blood work generally comes back OK even when I’m flaring..except I am borderline anemic…no duh after 6 months of bleeding! Came back normal before it took them 3 months to figure out my gallbladder! Point is, too, only you know your body and the human body is sooo complex and different for everyone, but especially people like us uc’ers , etc.And I second that it sounds like hemorrhoids or or low rectum bleeding.
    Just my 2¢!

  18. Caroline
    Caroline April 5, 2013 at 4:22 pm #

    Ann, you do make some great points here. That has been on my mind a lot lately – this disease keeps me on top of my health and I am grateful for that! I am careful with what I eat and drink and exercise – I am coming out of my first flare and *think* I might be tasting a little remission myself. :) I feel great and have gained back 15 of the 20 pounds I lost, my energy is good, and things are pretty normal in the bathroom. Well, my “normal” has probably never been that great, but I am happy with where they are. If I try something that my body does not like, like soy or any grain, I have a small amount of bleeding the next day that goes away when I get back on track. My bigger issue coming out of the flare has been mucus – that doesn’t seem to be going anywhere. But I am not going to obsess about it. My business is solid and I can live my life. No complaints here. :)

    • bev April 5, 2013 at 5:43 pm #

      Love your last sentence, Caroline…my business is solid and I can live my life…fantastic words to live by…it’s all we can hope for.

      Also, I’m not going to obsess about it…oh how we UCers tend to do THAT!! We scrutinize every little thing sometimes, don’t we? I too have had to learn NOT to obsess.

      Great to hear that you are doing so well…and you are!!

      Cheers
      :)

      • Caroline
        Caroline April 5, 2013 at 6:27 pm #

        Thanks Bev! The not-obsessing thing is a day by day challenge, but life is so much sweeter when I try to relax a little. The past 6 months have been spent examining everything and trying everything and frankly, it’s exhausting – it’s time to stop trying so hard. Of course it’s easier to feel that way when things are going well – I can only hope that if things slip I will maintain the same mindset! :)

        • bev April 5, 2013 at 9:54 pm #

          Hi Caroline,

          I just love your posts…it’s time to stop trying so hard…that could be a bumper sticker for UCers!!

          :)

    • UC Family Boy
      Uc family boy April 6, 2013 at 3:46 pm #

      Yep agree with feeling healthy than most ‘normal people’ as we keep focus on what’s good for us.

      Definitely in it for the long run..

  19. Ann April 10, 2013 at 9:18 am #

    Hi Caroline, Sorry it took me so long…I am glad to hear you are getting a taste of remission…have you tried the evoo? I think it helps the mucus.

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