Ulcerative Colitis Tips


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If You Could Eliminate 1 Colitis Symptom Forever…

 




64 Responses to If You Could Eliminate 1 Colitis Symptom Forever…

  1. Mylene
    Mylène November 22, 2012 at 7:25 am #

    I would also add frequency which is very annoying and wish would go away !

    • Adam
      Adam November 22, 2012 at 9:40 am #

      Hey Mylene,

      I know its a little late since you may have already responded, but i just added a “fill in your own answer” to the poll. Thanks for reminding me:)
      and I hope you’re well:)

      -Adam

  2. joanna November 22, 2012 at 8:36 am #

    as soon as i saw this post, i was like “PAIN PAIN PAIN!” i could definitely live without cramping forever and just deal with the rest of the symptoms.

  3. Richele
    Richele November 22, 2012 at 8:42 am #

    I commented on the Facebook post, but thought I’d say something here, too. The urgency, freaking running to the toilet, suuuucks!! I am always so nervous doing normal daily activities, going out into the world where bathrooms are not available is frightening and stressful. Being stuck in traffic is stressful. Friends and families homes where there might only be one toilet is so stressful! I agree with Mylene, too…the urgency and the frequency is awful. Especially at night.
    I could do with out ALL of it though! Obviously.

  4. M November 22, 2012 at 9:53 am #

    All of what the previous poster said…scared of car trips, vacations, work bathrooms, staying with relatives on weekend trips, traffic, long lines…basically leaving the house…

  5. PeterNZ November 22, 2012 at 2:51 pm #

    Since I’ve had colitis I can now only sing in a tenor; much like Pavarotti – and it is driving me crazy!

  6. bev November 22, 2012 at 6:14 pm #

    That’s SO hard to choose just one…three would have been easier…I chose bleeding, but pain and urgency are right up there at the top of my list!

  7. shelly in maine November 22, 2012 at 6:19 pm #

    Yeah, I agree…kinda hard to keep bleeding…it becomes a real game changer. And then urgency…that makes you just stay in, but blood loss….

  8. Tracy November 22, 2012 at 6:47 pm #

    The urgency is terrible. I feel so isolated a lot of the time.

  9. Rainy November 22, 2012 at 8:33 pm #

    I’m completely with you Tracy.
    Iam in my 3rd flare and it’s driving me mad as I am up constantly running to the bathroom at night with an urgent need to pass wind (which turns out to be blood)!!
    I’m so tired with very little energy to do anything. Leaving the house is a risk, I also cannot have any visitors come over through fear of not only not making it in time to the bathroom but the noise I make when I actually do make it to the bathroom…..sooo embarressing!
    I hate all the symptoms associated with UC but by far for me it has to be the constant uncontrolable urgency to make it to the bathroom in time.

    • kirsty February 11, 2013 at 7:23 am #

      That reply to tracy from Rainy could have been from me – exactly what i’m going through and feeling – so very fed up with the toilet runs and feeling like if i go out i won’t make it to the toilet in time and if i do everyone will hear the excessive noise my wind/blood combo makes – i have a gentle laxative prescribed and if i am working at home i use that as it seems to be when my inflamation (rectal) and therefore constipation is at it’s worst that i go through the wind/blood problem at night a lot more – worth a go – when i was x-rayed it showed that since my most recent flare began i had become really quite constipated as nothing could get through the inflammation – hope you all feel better soon

  10. Debbie November 24, 2012 at 7:56 am #

    If I had to pick one, it would be the bleeding. It scares me so much…and Ive had to have blood transfusions because of it.

    • bev November 24, 2012 at 8:21 am #

      Same here, Debbie. Let’s face it, we UCers get used to seeing it, but it just ain’t ‘right’, right? Nobody should be bleeding there…

      Cheers:)

    • joanna December 13, 2012 at 2:38 pm #

      i think i have changed my answer and i agree with yours now! bleeding is the worst! i had to get two blood transfusions a few weeks ago and will need a few more soon. i’d give ANYTHING to get rid of the blood.

  11. Tim November 25, 2012 at 4:17 pm #

    Having had UC since 1998, I can tell you it is definately the frequency and urgent feeling you get when it’s time to go !

  12. Trevor W November 26, 2012 at 7:50 pm #

    No blood! God, I always see blood….it is sooo rare I don’t see it….there is at least a little bit showing or a lot….it’s enough to drive me nuts! And the weird part is…I feel completely normal most of the times. It’s not until I take a dump, is when I’m like “daym…how did that come out of me? I feel pretty good today….nothings been out of the ordinary?”

    I dunno whats going on now, because I had the best poops for a while (4 months) on this SCD. But recently I had a couple illegals by mistake and it completely screwed me up. I get those BM’s where it’s just blood! Damn man……someone say it’s not happening! I had one good stool last week…the rest was mushy water and blood. God…this is the worst disease….now when I have my bm’s im gonna just not look until I feel that good feeling….you know…the ones where your trying to get that bugger out and it’s slowly slithers out like a snake in the jungle? Ya…haven’t had one of those since Friday.

    Ok…time for me to stop bickering…..

  13. Laura November 28, 2012 at 8:00 am #

    Urgency!!!

  14. Chelsea November 28, 2012 at 2:10 pm #

    The urgency is absolutely horrible! I’m supposed to go on a trip this weekend with my family and it involves a 5-6 hour car ride and I’m terrified because I’m in the middle of a flare up. I upped my prednisone to 30 mg today from 20 mg because I’m still losing a ton of blood and having to go at least 10 times a day. Hopefully upping my dosage and trying to stay on SCD will do the trick and get me back in remission. Fingers crossed! :)

    • Adam
      Adam November 28, 2012 at 4:58 pm #

      Hey Chelsea,

      I hope things can calm down with your med change, but one thing that might sound barbaric, but I did it for quite a while was, my dad gave me a bucket and some paper towels and a roll of toilet paper, and I had that in my trunk of the car for quite some time after I was diagnosed. Again, just for the “in case” time when you’re out on the roads and have no clue where a bathroom is. I never had to use it, but if I did, I planned on opening up the car doors on the right hand side after pulling over and making a little outdoor toilet deal. I hope your trip goes well, and hang in there. The flare is going to pass.

      -Adam

  15. Chelsea November 29, 2012 at 7:47 am #

    Adam,
    That might sound barbaric to someone who hasn’t had to deal with what UCers have had to deal with but it makes perfect sense to me. As crazy as it sounds, I always have a large disposable cup in my car and napkins for just in case. It’s such a miserable feeling when it hits you and you don’t know where to go or if you’re going to be able to make it. It actually helps calm me down when I remind myself that if I absolutely had to go, I could. This disease is such an ugly thing and although I try to be very open with the people closest to me, there are just some things that I can’t share with people because I know they wouldn’t understand. I’m so glad you have this website and it’s a place for people to share their stories and be real with things rather than having to give the edited story that I have to give to so many other people. Thanks for all you do Adam!

    • Adam
      Adam November 29, 2012 at 4:56 pm #

      What up Chelsea,

      Way cool! And I’m so glad you’re stashing cups and they’re helping you out. The mental game is huge right!!!

      Super glad you’re enjoying the site, that’s the best news of the day:)

      Stay in touch, and who knows, maybe we’ll be riding together someday and you’re gonna have to pull out the cup for me, you’re cool with sharing right?

      -Adam

    • Nikki in Chico
      nikki February 11, 2013 at 5:21 pm #

      AHHhaha!!! One time my husband was using the bathroom and I had no choice but to go in a grocery bag! We both laughed about it. The urgency is the WORST!

  16. bev November 29, 2012 at 10:20 am #

    I second that Chelsea!

    Adam is quite something…what kind of person starts a website like this so that we can all help each other?

    Adam Scheuer does!

    I don’t care if you’ve heard it a million times before…YOU ARE THE MAN my friend. This website has saved alot of us who are/were at the end of our UC tethers…

  17. shelly in maine November 29, 2012 at 4:11 pm #

    I third it!! :-) or millionth it?!

  18. Richele
    Richele November 30, 2012 at 8:06 am #

    Haha!! I’ve pooped in many containers in my car. Like you said, Chelsea, sounds gross to Non-Ucers but to us…it’s just part of the deal! I have grossed my kids out so many times pooping in the car! Better than having an accident in my pants or on the upholstery of my leased car. hahah! I bought an antique bed pan at an art fair a few years ago, and have used that many times! I, too have napkins in the glove box, hand sanitizer and a change of clothes…just in case I have to poop in rush hour traffic. Grossss!!! hahaha You’ve gotta laugh at yourself and just go with the flow. No pun intended. ;)

  19. Kat December 8, 2012 at 10:47 pm #

    The horrid gas pains and cramps

  20. Sloane December 13, 2012 at 12:31 pm #

    URGENCY…I have no social life ='[

    • Adam
      Adam December 13, 2012 at 8:15 pm #

      Sloane,

      Keep your head up, you’re gonna get some good living in the future, but I hear you for sure, when the urgency kicks in, the toilet bowl isn’t much of a friend. Hang in there, its gonna get better:)

    • joanna December 13, 2012 at 8:44 pm #

      oh girl, i know what you mean! IBD forums are my social life! haha we will get through this.

      adam’s right. flares don’t last forever so just keep on truckin! even if that means carrying an emergency bag with you everywhere! i always have hand sanitizer, paper towels, tissues, a Depends diaper, and a plastic bag. you never know when it’s gonna go down.

  21. missclairol December 13, 2012 at 6:07 pm #

    Pain and cramping

  22. Kris January 14, 2013 at 4:42 am #

    Muscle/joint pain. I’m kind of over this constant feeling like I have the flu. I’m 24 but I feel like I’m 80.

  23. Lia January 14, 2013 at 9:50 am #

    Accidents!!

  24. missclairol January 14, 2013 at 1:26 pm #

    GAS all in capitals!!

  25. Freddie
    Freddie January 23, 2013 at 12:21 pm #

    I would say the cramping and gas pains.

  26. Hayley from Dorset
    Hayley January 31, 2013 at 10:21 am #

    The urgency, there’s nothing worse than standing in a line ready to pay for your items (clothes ) and you get that feeling ‘uh oh’ I try to hold on, get all hot and bothered, then you literally have to find a loo. So many times I have asked if I can use the shop staff loo… They look at me funny, but who the hell cares. If they lived with it, they would do the same I’m sure, either that or crap ya pants x

    • Missclairol February 2, 2013 at 3:41 am #

      Just yesterday I had a store thstnweoul not let me. I

      • Richele
        Richele February 4, 2013 at 6:48 am #

        Missclairol,
        If you go to http://www.MyIBD.org you can order a “Medical Alert” card that can help you get access to “non-public” toilets. It’s called Ally’s Law and shop employees are legally obligated to let you use the restroom. Not all states have the law but you might want to check it out! Here is a link to a useful website http://ibdcrohns.about.com/od/Glossary/g/The-Restroom-Access-Act.htm
        Richele

        • missclairol February 5, 2013 at 9:44 am #

          Thanks Richele,

          I am in Canada and am going to check and see if they have that here.

          cheers!

          • Trish March 31, 2013 at 6:09 pm #

            Did you find out if this is a law in Canada? If it isn’t, it certainly should be.

        • missclairol February 11, 2013 at 9:56 am #

          Thanks Richele, I just looked into ordering one.

  27. Emily Kate
    Emily Kate February 2, 2013 at 6:49 pm #

    The joint pain, urgency, gas, and constantly being tired out easily are the worst for me.

  28. Trish February 11, 2013 at 7:40 am #

    Without a doubt the urgency xxx hate hate hate it.
    I have been on the SCD diet for 45 days and still sorting out a few food intolerences but no more
    blood, gas, pain or 10 visits a day. It is an amazing diet.
    If I eat something that does not agree with me all the above come back.
    Wish all people would try this diet am sure if they stick to it strictly they will have as
    much success as I did.

  29. MALU February 11, 2013 at 8:13 am #

    I agree with Emily…now I am feeling OK but month ago I had a crisis that took like two months!! after that I got something for me, hemorragic gastritis! the doctor told me it was caused for the high dosis of prednisone that I had to take…has anyone heard of that?
    Now finally I feel all right and I hope it is going to be for a long time…now, I can see my face in pictures that I have from those days…looking tired, my eyes looking like full of tears…the picutures were taken at a wedding I attended, and what I remember the most from that wedding was my urgency for using the bathroom, the long lines I had to wait, and feeling so shame!!!
    At least I can see I am not alone in this story. Thanks Adam for creating this group…

  30. Mary S
    Mary February 11, 2013 at 8:27 am #

    The bleeding is horrible but the urgency is the worst. Even when not in a flare, when I have to go, I have to go NOW. We have an all day drive to NYC coming up in March, which I’m just dreading.

  31. Matt February 11, 2013 at 8:28 am #

    Urgency, every time ;)

  32. Gina February 11, 2013 at 8:46 am #

    I now recently have a container in my car with extra pants underwear and toilet paper. I have had an accident and it was terrible. It kept me in the house with embarrassment and fear for years. Now I am learning I am only human but also a human with a disease that I need to learn to live with and not hide with. In my case the one symptom I could do without is fear.

  33. cindy February 11, 2013 at 9:39 am #

    The constant urge

  34. Amanda February 11, 2013 at 9:55 am #

    Pain! I would eliminate all pain. I may be able to deal with the other stuff if I wasn’t in pain everyday.

  35. Autumn February 11, 2013 at 12:03 pm #

    All of the pain.

  36. Gerald February 11, 2013 at 5:53 pm #

    ANXIETY!!

    Me its beening uncertain of whats going to happen in the future..Im doing good now but its the ( what if ) that I hate. Since being diagnosed at 17 now im 37 . Last major flare up was in 98 and was in the hospital for abit…also have been diagnosed recently with low vitamin b-12 and also have the beginning of Ostepedida (not sure I spelled it right)but from the steroids I was on in the past for the UC waiting for more results.Hope it’s good.

  37. Bec February 11, 2013 at 7:34 pm #

    I have 2 answers:
    While I’m in a flare-up I hate the urgency (and associated pain and discomfort).
    While I’m in ‘remission’ (which is never true remission but when my GI Doctor says I am) I hate the fatigue/lethargy.

  38. Patrick C February 12, 2013 at 5:03 am #

    The pooping in my pants. I can handle the pain. If the diarrhea would just go away, that would eliminate the cramps, stress and the urgency.

  39. Lily February 18, 2013 at 7:21 am #

    I have proctitis and recently had a baby. My experience with u/c has worsened drastically since then. Now when I have a flare, I get a dull pain and severe pressure in my pelvic area which doesn’t allow me to stand for more then a few minutes (or worse). It’s been really difficult to do anything or go anywhere because it’s so intense. At first I thought that the pressure was caused by a prolapsed uterus, but an examination proved that that wasn’t the issue. That’s when I realized that it was linked to u/c flares and that the inflammation was probably causing the pain. There isn’t anything on the web about this; has anyone else experienced this?

  40. Julie March 21, 2013 at 11:47 am #

    the gas… that’s all the gas… please let it go away..

  41. Jennifer March 21, 2013 at 3:27 pm #

    for sure the PAIN!! i am so tired of being in pain, pain from going to much, pain from gas…sometimes i can’t even stand up!! and also fear of eating anything cause it might cause me pain, this colitis has made me so weak and i am too scared to eat and not sure what is safe for me to eat

  42. STURTTER May 19, 2013 at 5:46 pm #

    To me it’s just not knowing when my gut is going to hit me..

  43. Wendy
    Wendy May 19, 2013 at 8:04 pm #

    Urgency is the worst.

  44. Don
    Don May 24, 2013 at 9:45 am #

    The urgency is the worst for me right now. I made it to the parking lot this morning, parked, got out and had a load in my diaper by the time I got to the front door. I turned around and funny walked back to my truck and got my spare diaper out. Went back and right to the BR for a clean-up. I’m getting good at this! It’s impossible for me to hold it and the closer I get to the bathroom the worse it is! WTF?
    P.S. Thanks Adam for this site. I don’t feel so alone now.

    • Wendy
      Wendy May 24, 2013 at 7:19 pm #

      Ugh, that sucks. I’ve sweated before like broke out into a sweat and broke the speed limit racing to my house because of urgency, but never actually crapped myself. I guess if it came to that though, I would do what I have to do with relatively little shame. I would also probably tell people who don’t want to hear it and lose friends.

  45. lynne May 24, 2013 at 11:19 am #

    I agree that urgency is the worst.

  46. Kris June 22, 2013 at 5:14 am #

    Urgency and accidents and gas. This is not a subtle disease :o( I have to plan everything with a bathroom-related contingency. I work in a prison and wonder when they are going to watch security camera tapes with me going into the bathroom all the time and sometimes staying for a long time to clean up if an accident. Women are lucky because we can wear sanitary napkins, just placed a little differently. At least we can avoid diapers at times. I had an arm injury about a year ago that caused nerve damage in it. It seems that since that time I can’t get back into any sort of remission. I could have lived my whole life without this experience….

  47. April June 23, 2013 at 6:01 pm #

    The urgency is the worst. I have had many accidents. My biggest fear is having one at work. If it happened at work and my co- workers found out I would quit! I have had many close calls, I work at a retail drug store and have to get coverage to use the bathroom, and the restroom is so far away. When I”m finally on my way to restroom I praying that I make it in time and that a customer doesn’t stop me to ask where a product is!!!

  48. HEATHEN HOLIDAY December 30, 2013 at 6:14 pm #

    URGENCY. Without a doubt. It’s like a form of slavery.

  49. Keisha January 12, 2014 at 7:39 pm #

    I would have to say urgency is the worst. I am a teacher’s aide which means I have to sub when the head teacher is out. Urgency makes my job very hard because I worry every time I’m alone in the classroom. Each time I sub, I have to think of all the options I have if I have to GO. My coworkers are very understanding. I’ve been at my job a long time and was diagnosed after I started working. I remember the times I didn’t have to worry about going to the restroom. I used to love field trips, now I dread them. I just sit on the bus & close my eyes and try to relax until we get to our destination.
    I dread long lines of any kind, grocery stores, clothing stores, gas stations, voting lines, etc… I love Halloween and my husband and I would go to the haunted houses every year, now I don’t because a few years ago after paying to get in, I couldn’t hold it any longer and had to leave. I felt so bad.
    I’m in remission right now but I still worry because it could come back at any time. I would have accidents when I’m at home, so I know there’s a chance of having one other places (I did have one at work before, thank God the kids were in a special class). I can say that keeping a “survival kit” does help the fear. I bring it on road trips and field trips. I let those around me know what it is. To me, when I tell those people I’m around my situation, they understand most times and I feel more at ease. Thank you Adam, and everyone on this site. It helps to know I’m not alone.

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