Blood, Anxiety and Humiliation

Blood Anxiety Humiliation in England with Colitis

Introduction to a super cool UC’er from England:

I’m Liv, I’m from England and I’m a young girl who was diagnosed with a mild (yay- for now :P) form of Ulcerative Colitis in January 2011 after what ended up being a flare up between October and December and a colonoscopy! :)
Symptoms I’m Having:
Doing well at the moment :) Except from STILL passing a lot of blood (concern?) and having the occasional ‘off’ day

My Story:

So happy I came across this website from Adam’s you tube channel! Honestly don’t think that U.C/Crohn’s is talked about enough as many people, including many of my family and friends still don’t understand it :(

Anyway, since being diagnosed with UC in January, things have been going pretty well, (well, better than I thought!) However, the thing that I’m most struggling with is the anxiety and humiliation of the disease. As time goes by, I am manning up and I’ll now talk frankly about my symptoms, yet I still refuse to use public toilets when I need to have a bowel movement, simply because of the embarrassment of ‘exploding’! This has prevented me from going on camping trips, overnight college trips etc which, I have to say, is getting me down as I used to be so carefree about everything.

Another thing that I get anxious about is worrying about whether I’m going to be ill or not. Like I’ve said, I have ‘off’ days where I could be going to the toilet 8 times in a row and having that bleeding feeling in my abdomen as well as general tummy ache. This springs on me at the most random times, which is why I get so worried.

Anyone have any advice on dealing with the anxiety and not being able to ‘go’ in public?

Luckily for me <sarcasm>, I HATE hospitals and my worst nightmare would be having to spend time on a ward (which I had to for my colonoscopy) or going to A&E; I genuinely hate hospitals, but it is made worse by my strange phobia of vomit and people throwing up. Brilliant. So having UC has brought this to a head.

Just another thing that has being worrying me and which I shall be bringing up with my gastro consultant is about the passing of blood. I seem to pass a lot of blood when I go which looks fresher than usual and mixes in with my stools as well as ‘dripping’ out afterwards. I don’t have piles. Should I be worried? Does anyone else have this?

Hope to speak to some of you soon! Hope your all doing well :)
Where I’d Like to be in 1 Year:

Passing my exams and happily getting ready to go to university, and a lot less anxious and content with my U.C! :)
Medications:
Currently taking 800mg Asacol three times a day!

written by Liv

leave me a comment below!



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anxiety, humiliation

12 Responses to Blood, Anxiety and Humiliation

  1. Justin
    Justin June 28, 2012 at 3:56 am #

    Hey Liv! I would definitely be concerned about the blood. I had the same issue before I was diagnosed and by the time I made it to the hospital they said I was anemic and almost had to get blood transfusions. Are you feeling weaker then usual or light headed? For me the bleeding didn’t stop til they put me in prednisone. Also high fiber food seems to make it bleed more especially lettuce and salad. From what I was told by the doc the high fiber content is more rough as it passes through the colon and it scrapes the lining of the walls (I don’t know if that’s legit or not) lol. I would try and get a blood lab done just to be safe. Another thing that has helped me personally with the anxiety of having to drop bombs in a public bathromm is anti-diarrheal medicine like immodium. It helps me with frequency / urgency. I hope things start getting better for you and best of luck! :)

  2. Ruthe
    Ruthe June 28, 2012 at 10:32 am #

    Hi Liv,
    Yes! Get the bleeding checked out! You don’t want to become anemic and there’s a good chance that will happen with a lot of bleeding.
    As far as using the public potties…well…when you gotta go, you Just Gotta GO!! I know how you feel, because the closest potty to where I work is directly across from my station. I can hear, through the door, people talking and it is HORRIBLY embarrassing! It sounds like, because your UC is mild and under a bit of control, that your lucky to be able to wait. It may not always be that way, so there are a few “tricks” you can use to help. I do two things when UC get’s really noisy…First, if I’m in a single toilet potty, I run the water full blast (this doesn’t always work when it’s one of those auto-shut off faucets. I also try to use a big chunk of toilet paper, held close to the (ahem) area that’s making all the noise ;-). That will often muffle things enough to be tolerable. More than anything, though, is remember that you have a disease…there’s really nothing you can do when things get noisy. If someone gives you the stink eye, just look at them and tell them how lucky there are to have a healthy colon. I’ve had to do that an they’re instantly very embarrassed!

  3. krista June 28, 2012 at 11:52 am #

    Hi Liv,
    I completely understand avout the going in public anxiety! I am also
    Very worried about that myself. What i find helpful is no matter where
    You go, make sure u know where the bathrooms are at just in case
    An emergency. Like if u go camping or on campus see if there r bathroom away from
    People u can get to. But of course then theres the issue of walking all thee
    Way there..:/ i havent went camping yet but ive been on trips in hotels
    But it was only with other girls which over time i began to care less
    About that. The immodium could help to like mentioned before. I am
    The same way about anxiety, sometimes i think it is just my mind making me
    Stressed which then activates a stomach ache:/..breathing works for me.
    I know this probably didnt help to much but i definatly sympothize with you!
    I hope thongs get better..also, eating gluten free helps to, for me it lessens
    Symptoms.

  4. PeterNZ June 28, 2012 at 2:28 pm #

    Mate,

    I’m not a doctor but have a lot of experience in dealing with colitis and bleeding….here’s my thoughts:

    I think Justin (above) is right about the bleeding and taking prednisone to stop it. I’d go today and get prednisone were it me. 40mg sorts me out in like a couple of days. You might even see results the same day. It is a wonder drug (but it can only be used short term….there are potential side effects… ask your doctor). I suggest you review all your meds if you are still bleeding and taking just Azacol. This suggests to me that your UC is not under control and that your current regime is insufficient to attain control and then maintain it. I feel you need a good whack of steriods to knock the bleeding on it’s head and then to look at something like Azacol to keep the bleeding at bay. They are 2 different types of drug – Azacol is NOT designed to “stop” a bleeding flare-up. It is an anti-inflammatory that helps to prevent you bleeding after a flare and you take it long term. Prednisone acts to stop the actual bleeding when a flare occurs and then you “taper” down the dose and stop taking it once you stop bleeding.

    A blood test would be a good idea at this time. It should include: Full Blood Count and Iron studies (for anemia), C-reactive protein, ESR (markers for inflammation)Liver and Kidney function (get a baseline for how they are functioning now). We would want to know if you are anemic and the amount of (and source of) inflammation in your body. If he results of analysis of markers for inflammation are low then we can look at sources of bleeding other than a flare (e.g. internal hemorrhoids) and different treatment could be proposed.

    Whatever you do DO NOT TAKE IMMODIUM! Immodium stops your colon moving this rotten muck out of your body. You do not want this stuff staying in your colon. The use of Immodium can result in condition called “toxic mega-colon” and this can require emergency surgery to remove your colon and can be fatal. Google it.

    Other than that UC is not the end of the world and you just get used to it. It will not prevent you doing anything you want to do with your life.

    Good luck and keep us posted,
    Peter

    • Peter Rye June 29, 2012 at 9:34 am #

      How about Slippery Elm ? Would this be safe to use ? I used to use it before having UC when I had an upset stomach !

    • Bev June 30, 2012 at 9:23 am #

      PerterNZ!

      Alomst Every time I read one of your posts I learn something I didn’t know.

      Alot of people talk about immodium on here, which I have never tried but have thought about it, and now I won’t. I always sort of had an inkling that those anti-diarrheals weren’t good for you.

      Also, what you say about taking blood counts as well as inflammation tests, to know where the actual source of the bleeding may be. Spot on! Internal hemmies can most def be at play, especially if that blood is so bright. I always think…bright blood ain’t as bad as dark blood.

      Cheers:)

  5. PeterNZ June 30, 2012 at 10:03 pm #

    Cheers Bev,
    It’s funny how you pick up these things on the way. It’s good to be able to pass it on to the newbies. My doctors have told me I have the worst case of colitis they have ever ever seen. I used to worry me and the flares would freak me out but now it is nothing.
    Keep on truckin’,
    Peter

    • Justin
      Justin June 30, 2012 at 10:36 pm #

      PerterNZ, glad you mentioned about the immodium. One of info packets they gave me at the hospital said to take an anti-diarrhdal. I should have done more research on it rather then just trust the papers. If you get a chance you should check out my story and shoot me some advice if you have any it would be greatly appreciated. I don’t know the link but I’m on the first few pages of just diagnosed, Justin from new Mexico 26 years old.

    • Bev July 1, 2012 at 8:49 am #

      Fabulous!

  6. Liv July 1, 2012 at 1:22 pm #

    Hi everyone,
    Thanks for all the comments- great to hear from you all!
    Justin- Decided that I’m definitely going to mention the blood at my next appointment with my consultant which is in a couple of week’s time. I also have to say that I’ve tried Immodium in the past and it hasn’t worked!!! Not sure if there are any other anti-diarrheal medicines around, which could come in handy for overnight stays etc.
    Ruthe- Haha! Love that advice- and that line of telling them that they’re lucky to have a healthy colon!!! Definitely will have to try that at some point. Just going to have to get used to it and think that I’ll probably never meet these people again anyway. I think its the fact that I want to go camping and on sixth form trips with all my friends, but all the people my age can’t understand this kind of disease things so if I did get ill on a school trip, you know what teenagers are like- rumours spread, nasty comments etc!
    Krista- The anxiety definitely does that to me- if I get the slightest stomach ache (even if it’s absolutely nothing to do with the U.C) I panic, especially if I’m not at home- which then starts to activate the U.C. It’s a vicious circle! I’ve even started drinking herbal tea to try and help, especially at night. Though I think I’m going to mention the anxiety at my next appointment because it really does feel like this disease is kind of beating me socially- though don’t get me wrong, I’m so grateful that I’ve got it mild, (thought sometimes it doesn’t feel like it) and I try not to moan because I know that there are so many people worse off!
    PeterNZ- Well, even if you’re not a doctor, you definitely sound like one! My last blood test, which was about a week ago came back ALL normal, even the one that says about anaemia which I was pretty surprised with!!! Will just have to see what the consultant says! I was actually thinking internal haemorrhoids (though how are they treated?) but will just have to see. I’m not ill enough to need full steroids (as in oral ones) but maybe the ones you put up your bum (can’t remember what they’re called!!!)

    Again, thanks for all the support!!!

  7. Johnny Drama
    JohnnyDrama July 2, 2012 at 11:29 pm #

    Hey Liz,
    I definitely had the bleeding issue like you. It went on pretty much two months until my diagnoses. I actually had a sigmoidoscopy done and they said I had internal hemorrhoids and so they banded them. Not a fun procedure, it only took like 5 minutes, but it was so uncomfortable. They had me lean over and stuck a long probe thing…. well you can picture the rest. It really didnt solve the problem, because it turned a few weeks later I was diagnosed with UC. But I hope that will stop the bleeding.
    Best of luck,
    JD

  8. Kasey July 3, 2012 at 4:45 pm #

    Hey Liv,
    my names Kasey and I’m 11 years old. I got diagnosed with uc just this febuary. But let me tell you something: you seriously need to get the bleeding checked out! I was bleeding (and “going”) EXACTLY like you were. But the thing is I told no one about the bleeding, so I was bleeding for 7 MONTHS!!! It finally got so bad that my mom found splatters of blood on the sides of the toilet and asked me what was going on. So I told her and the next day I was at the doctors office. After the took the regular poo tests and all they said transport her to Childrens Hospital NOW!! So it was a roller coaster ride from there. I had to get a blood transfusion. Two whole bags!! It wasnt very fun AT ALL!! I hope that doesn’t happen to you!!

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