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How Was Your Poo Today?

Harley Colitis AustraliaIntroduction:

Hi my name is Harley, I’m 29 years old and am a kiwi living in Melbourne, Australia. I was diagnosed with UC in July 2011.

Some more about me:

I enjoy playing guitar, keeping fit and hanging out with my girlfriend and friends. Enjoying exploring Melbourne city and the rest of the state. Would love to travel to south east Asia but feel Ulcerative Colitis is holding me back.

Symptoms:

Mild pain, stools once or twice a day and are forming better. The other day I bombed a massive log and it was AWESOME! Have just switched to Mesalazine (3g in the morning) which is going good so far.

Symptoms before I was diagnosed:

  • Bathroom trips 10-12 times a day
  • Major weight loss
  • Tiredness/no energy
  • Hemorrhoids
  • Cramping

How Was Your Poo Today

I was diagnosed with Ulcerative Colitis mid 2011 and was living in Queensland, Australia at the time. I started to get sick around April 2011 after returning from a holiday in NZ. I lost a LOT of weight, went from 83kg down to 66kg, and was going to the bathroom 10-12 times a day. I found it very difficult to find a doctor that believed I had something else wrong with me other than saying ‘oh you must just have a bad diet and drink too much!’ – which I don’t! Had all the tests you can imagine, bloods for allergies, a Barium Meal, saw a nutritionist even. Looking back now, I’d had two very mild flare ups four to five years before which only lasted for one to two weeks and thought it was just a random tummy bug.

I’m an Architectural draftsman by trade and found it very difficult to keep working and ended up leaving my job to get myself well again. Being in a smallish town I got put on a waiting list to see a specialist at the local hospital but was told I would be waiting for four months to even get a colonoscopy. Eventually my girlfriend had enough, so found a private specialist and booked me in for one at our own cost, SO glad that we did this as I was living in agony, couldn’t leave the house much because I was scared of being away from a bathroom.

At first, with my diagnoses I wasn’t really sure what it was or what to do, I didn’t really get too much information about it and was not put on any preventative medications. After being on Prednisone (side effects: sore eyes, blurred vision, headaches, dizziness, dream like state – 50mg tapered down to 5mg over a couple of weeks), I was feeling much better.

Me and my partner decided to move down to Melbourne after me feeling more normal again and didn’t really let it bother me too much until a flare late last year I booked into see a local naturopath to see if that helped. I also got on the waiting list to see a specialist.

After seeing the naturopath I got my bowel movements down to one to two a day, I had cut out wheat, diary, canned food, preservatives, basically went back to how our parents used to eat and preparing food from its original form. I also have suffered from headaches my whole life and found these where gone.

The Melbourne based specialist I see at the moment I find isn’t very personable and his IBD nurse is hard to connect with, they basically said to me diet has NOTHING to do with your condition, which I find so hard to believe and that they are actually telling people this! Before seeing the specialist and following the naturopaths suggestions I felt heaps better. But on showing these to the specialist he kinda just waved them of, they don’t have any proven evidence of working and the nurse mentioned that they have a ‘placebo’ effect.

I was put on Sulfazaline (Side effects: Popping ears, very strong antidiuretic) I found this drug didn’t help me much, still had soft stools and pain. And told I would be on drugs for the rest of my life…. I also did some research on the internet I found that this drug has symptoms like diarrhoea and abdominal pain exactly what they are trying to stop! It doesn’t make sense!

I have just finished a contact drafting role which I had been doing since moving to Melbourne. I was starting to struggle sitting down and not moving all day, as I’d get a sore, bloated stomach. Am looking at a career change at the moment, I’m considering furniture making and finding an apprenticeship. I’d like to know if anyone else has struggled with their line of work as I have, particularly if you sit down all day? This disease has really effected how I think about the future and what I can and can’t do. I’d also like to hear about anyone travelling with this disease particularly in south east asia and how it effected them?

I have just changed to Mesalazine granules and they are going well so far and have just been to my first IBD support meeting aswell, and found it good to hear other peoples stories. It also helps my girlfriend as she worries so much – probably more than I do! I have found with having UC we talk more about our ‘poos’ so much that our friends and housemates ask ‘How was your poo today’?

Some potty humour for you all!

  • Poo slang
    • Meadow muffins
    • Butt candy
    • Goblins
    • Butt nuts
    • Sea pickle
    • Lawn sausage
  • Words that contain poo
    • Harpoon
    • Shampooed
    • Poolside
    • Tablespoon

Medications and Supplements:

Naturopath:
L-Glutamine – currently take
Omega 3 fish oil – currently take
Synbac – finished the round
Gut Relief – finished the round
Chlorophyl – finished the round
I took all of these before I even saw a specialist, and felt really good.

Food:
I add tumeric to rice (anti inflammatory)
Cinnamon to porridge or on top of pancakes
Ginger to EVERYTHING! Salads, hot drinks, stir frys, currys

Medication:
Salofalk granules (Mesalazine) 3g in the morning

written by Harley

submitted in the colitis venting area




12 Responses to How Was Your Poo Today?

  1. PeterNZ April 16, 2013 at 3:27 pm #

    Hi Harley,

    What I found is that I’d be hesitant to even apply for a job now. Even if I’d been fine for ages I know this thing could attack again with little warning and I’d be off work and letting people down.

    You would have to tell at any interview anyway so you probably are going to struggle to get a normal full time job again.

    I’ve been self employed for 5 years and found there are pros and cons. The pros mostly involve being able to schedule things for what suits you best (e.g. no morning meetings if you haven’t slept all night with toilet and pain). The cons sometimes involve having to work hard-out to finish something on time regardless that you are almost dead. All in all though you strike a balance and you can’t just do nothing.

    I do travel with this disease. I take comprehensive insurance and make sure that they definitely know about me having UC (it doesn’t cost much more it seems). I’d definitely make sure I was in a position to leave the country at very short notice to get back to a good hospital. I’ve mostly been sitting around the pool and doing a bit of snorkelling in Fiji and Queensland (so with good toilet facilities a few extra trips to the toilet is ok); I wouldn’t be bothered roughing it and shitting in a hole in the ground. When I was in India toilet paper wasn’t an option. You also might struggle to meet your dietary requirements in other places. I for one wouldn’t ever risk eating random street food with having UC – it just ain’t worth it, bro’!
    Hope this helps.
    Cheers,
    Peter

  2. bev April 16, 2013 at 4:15 pm #

    Hey Harley,

    Great that you take L-glutamine. I take it everyday, as well as a GOOD probiotic, and I am in remission with NO MEDS at all. I took asacol (mesalamine) for 14 years straight and it ended up working against me in the end…I must have developed an allergy to the highest dose.

    Food can definitely make a difference. I can’t eat real wheat…otherwise, I get blood the next day. We’re all different in what we can and cannot eat.

    Cheers, and welcome to the site….love your ‘poo words’…lol
    Bev
    :)

    • Harley
      Harley April 20, 2013 at 10:56 pm #

      Hi Bev,
      Thanks for your message,

      What type/brand probiotic do you take?

      Too much wheat products don’t really go down a treat for me either but I still do smash back the occasional sandwich (making sure its filled with goodness).

  3. Angela April 16, 2013 at 5:38 pm #

    Hi Harley,

    I don’t think you should tell at all during your interview…may its just in the States but your health should never be a deciding factor on whether you should be given a job…just my opinion. I haven’t had problems with internships and full time school (did architecture as an undergrad so sat ALOT). You have to find a balance moving around and making sure you stick to a schedule…I’m 24, walk as much as I can, and go to bed at 9:30 pretty much daily to ensure I’ve slept enough and can feel the best. I have every intention of having a career and I think you can to. UC should never stop you from doing what you love.

    I’ve also traveled a lot as well…spent 6 weeks in Japan, Mexico City (of course avoiding the water like a plague),and a year studying abroad in London and Florence and only had problems in Italy….something in the food there started to bother me but that was towards the end of the year and after living abroad…short term travel I’ve always been fine. I actually took myself of methrotrexate while in Japan. They’re incredible modern there so finding all the amenities you’d need isn’t very hard.

    11 years of UC and 9 years on remicade (infliximab) later I’m doing everything I want…even scuba diving! It might not seem like it now but you’ll get better and your worries will be a thing of the past! :)

    • PeterNZ April 17, 2013 at 3:28 pm #

      It is simply dishonest to hide serious illness from an employer.

      • Angela April 17, 2013 at 5:09 pm #

        I wasn’t saying “hide it”, I was saying discussion of your illness has no place in an INTERVIEW for a job. You should be judged on whether or not you should get a job on your qualifications not someone in the back of their head “thinking hmmm….” and having unwanted discrimination (its a hard enough job market as is). After you receive an offer then yes you can discuss potential issues and yes if during your job you have complications you should let them know. But again, I was talking about interviews. There’s a reason the US extended the Americans with Disabilities Act to protect many UC patients.

        “According to Title I of the ADA (which is the section that relates to employment), you cannot be discriminated against during the recruitment or hiring process. For example, Title I restricts the questions that a prospective employer can ask about your disability before making a job offer.”

        Its not being dishonest, its protecting yourself.

    • Harley
      Harley April 20, 2013 at 11:42 pm #

      Hi Angela
      Thanks for your message, letting a possible employer know about UC is something ill definitely have to have a think about.

      I found this link regarding Crohn’s & Colitis in the workplace which is an interesting read.

      http://www.crohnsandcolitis.com.au/ibd-in-the-workplace.php

  4. Ann April 17, 2013 at 8:22 am #

    Hi Harley, I think you are related to Adam…he has some funny phrases regarding poo too…my chunky monkeys are good today and I feel pretty fine…now, if I am not feeling 100% I slug down a Tablespoon or so of EVOO. It is keeping me on track…Started doing this February 14, 2013 when I began following Graham’s posts from November 2, 2012…I am blood free and a pretty solid poo-er…no meds…L-glutamine(Bev)…Vit D, Omega 3, multi…avoid wheat and nightshades…salads rock…eat beans, oatmeal, cruchmaster crackers, venison, chicken, pork, some beef…not sure about dairy…listen to body…relax if need to…very active otherwise…Hope this helps. GOOD LUCK!

    • Harley
      Harley April 20, 2013 at 11:53 pm #

      Hi Ann,
      It’s good to hear you’re a solid poo-er, one of the great pleasures in life!

      Is EVOO extra virgin olive oil?

  5. Adam
    Adam April 17, 2013 at 10:15 pm #

    Harley,

    Congrats to you on many different levels.

    First off, I think its way cool that you and your girlfriend have such a close relationship that you’re able to about all the poop talk so openly. Might seem like no big deal to you, but believe me amigo, there’s many people who would kill to be pooping in your shoes. (pat on the back to her too for being down with the poop talk, your friends included).

    Also, congrats in a major way to you for being so proactive and not just sitting back with your disease and going down the lonely depressing road. I’m sure you’ve had some tuffy days…we all do, but its clear you’re not just sitting there and letting it get the best of you.

    Keep on going to the support group meetings amigo. If you’re enjoying them, hit them up often. If they make you happy, well, last time I checked, that’s the goal here eh!

    AND, for sure, don’t get stressed out on your GI doc downplaying all that your naturo docs or diet ideas mean to you. If we all put a nickel in big bucket each time a GI doctor said “diet has nothing to do with it”…well, we for sure could buy all the tea in China. if you’re seeing results, placebo, not placebo, once again that’s the goal my friend. And quite frankly, no harm in taking a nice dump in a bag and sending it to your doctor every once in a while.(ok, don’t do that).

    Keep your head up. Get your furniture making on! Way cool BTW! my uncle (who had Crohn’s and lived with a colostomy bag for 30 plus years was a furniture maker for many moons). I wish you and your fam and friends the best. You’re gonna get out of this hole for sure. People like you wack this disease.

    -Adam

    • Harley
      Harley April 24, 2013 at 4:01 am #

      Hey man, cheers for the message,
      Funny you should mention poo posting, my IBD nurse asked me to send a poo sample to her at the hospital, just through the normal post! apparently they do it all the time, haha funny stuff.

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